Photos 1: Colectomy

Photos of the first Surgery of 2, The Total Proctocolectomy, with Ileoanal anastomosis formation, and temporary ileostomy

Medicial/Accurate: Surgery explained with text and images

Personal: Surgery explained why Mark had it and summary of procedures (good to read FIRST if you are new to understanding the surgeries)

**My story is told in these photos, the comments were all documented both photos and most the journaling by Megan (my partner of 14 years) during the time because we wanted to capture what was happening and feeling and experiencing at that moment.  We also wanted to show not only my journey, but also how the spouse can help healing through support and acceptance.

Pic1. Stoma Marking shown Night Before Step 1 Surgery

Stoma Marking Night Before Step 1

Here is Mark the night before surgery. The blue mark on his belly was done in a pre-op visit a few days before, the stoma nurse selected this location for Mark’s for his temporary loop ileostomy. This is so the surgeon knows where to pull his stoma through.

**We are adding this note after having this picture up for about 10 months and the comments we’ve received about how Mark looks fit in this photo, therefore his UC must not have been bad.  This is really complex to address – but at the time of surgery Mark was on prednisone and humira, he was having 12-20 BMs a day, urgent with no control, bleeding, fatigue, etc…He weighed 125 pounds in this photo (post surgery weight 140!).  Mark works construction so his body stayed fit most of the time, but his lowest UC weight was 100 pounds, scary times.  Also, before the surgery his GI gave him two pieces of advice: (1) Get high cardio before surgery you need to be in good shape and have a strong heart to recovery faster – so every day no matter how exhausted he was after work he would come home and skateboard for atleast an hour to get in cardio. It was almost spooky how driven he was to do the cardio although he was sick and tired.  (2) High protein diet. Protein helps the tissue in our body generate so it helps with healing. And yes, we did protein shakes for him and then made sure our diet was high protein.**

Pic 2: Mark with his mom, Carol, right before going into the 1st surgery

Mark with Mom

He was calm and ready to get rid of his worthless colon!  Mark and his Mom prior to surgery, they put Mark under a heated blanket that is why he looks so fluffy.  He wasn’t drugged here yet, but he doesn’t remember this photo being taken so the drugs that they soon gave him erased some of the early memories too.  I was really happy to have his Mom there, we were able to give each other support and that was really nice. She was nervous, I was nervous so it was good to have the support for each other.

If you are a spouse and you are reading this the following note is Megan’s take on Mark’s Mom in this and what I learned. As the wife I knew that during Mark’s surgeries (especially the 1st) that I needed to leave for good chunks of time so that Mark’s Mom could have him alone. I realized although he was 32 years old, he was still her “boy” and for her to heal, I learned she needed to do the things that the wife is now doing.  I found when I left she would fix his sheets, clean up the room, help with stuff, etc….Maybe I’m just be self-gratiutious but I felt it brought us closer and it let them have their bond.

Pic3: Mark just out of surgery

He was in surgery for 4.5 hours, and in recovery for 3 hours, then we were allowed to see him.    The surgeon came out and talked with us after the surgery was done, we didn’t have anyone come out in the middle of surgery.  And about an hour after we talked with the surgeon the anthesologist came out and told us he was awake and doing well.  It was nice that they kept us well informed and everyone greeted us with smiles and warmth.

This first night was really incredible – we have had a long journey to get to the surgery, and there were times that were not so easy (to say the least). On the night right after his surgery, he was awake for about 3 hours, still loopy by not out of his head by any means. He had a private room, and his nurse that night was like a dream, she was so quiet and gentle, the hospital was quiet for nighttime, all the family was gone, and it was just him and me, and that night it was like the past 7 years of UC were gone and we began to heal. All he wanted was to be touched gently, he wanted his feet, legs, arms, head, shoulders rubbed. And together that night we checked out his belly, the incisions, the stoma. It was just a very gentle and healing night that really set the stage for us to embark on our new life. I was so exhausted from the day, and now that it was over, there was sense of calm that felt almost surreal, I’ve not felt that before.

Pic4: Mark’s belly and stoma no bandage

Here is the belly the day after surgery. Let us explain what you see here.  His incisions were glued closed, so he doesn’t have to go in for suture removal.  There were 5  lapro incisions made:

2 North incisions (one is hidden under stoma bag by belly button).

1 South incision near the pelvic region where the colon and rectum were removed.

1 East where you can see the Jackson Pratt drain tube coming out of his belly with fluid mixed with leftover blood is where his temporary drain was.  What you see in this photos is right after surgery and draining lots of fluid out, his isn’t actively bleeding and the fluid in the belly cavity has a name that we can’t remember, he was told this fluid was totally normal and it became much less as the days went on.  He had the drain removed on day 5 (not painful to remove and there was a lot of tube in his belly.  A resident surgeon just removed it right there in his hospital room bed).

1 West where the temporary stoma is located. The stoma looks like a peeled cherry tomato and it has no feeling since there are no nerve endings in the small intenstine. The stoma is the small intestine that has a slit in it to allow waste to flow into his ostomy bag.   We just keep staring at the stoma, it is fascinating.

Pic 5:  JP Drain Image

The little bottle on bed is the JP drain bottle that has a tube connecting to the inside the body where the woundcavity is located.  The JP Drain catches the left over fluid produced in the area where surgery occured.  The nurses empy it out periodically through the day.

This picture is a donation from another Jpoucher, (RP)  she had her surgery in 2006, with some abcess and fistula complications.  This is one of her JP Drains she was generous enough to share with us so that we could complete the photos.  She had multiple drains through her recovery b/c she had some complications the one not pictured she had for about 3 months – and she explains  the one we see in the above photo with her quote below:

“(the left one I only had about 14 days), it got to be really nasty smelling as well and I would use the odor eliminating liquid they give you for the stoma bag sometimes inside the drain which wasnt easy to insert and it was messy. I also tried to wrap the jp in saran wrap, but none of that seemed to work … My Dr seemed to think that was from the infection inside my abdomen that was not standard drainage. The smell lasted about 4 weeks and once I started healing the smell got better.”

Mark’s drain didn’t smell that we noticed, but he did have it only for 5 days so that probably made a difference.

We wanted to add a picture of the JP Drain so that others can understand what is at the end of the mystery tube coming out of Mark’s stomach on the right side of photo image.

Pic 6:  2 piece ostomy bag not attached

Here is the bag prior to being put over his stoma.  You can see it is a two piece (there is an option of 1 or 2 piece).  Mark’s is two piece b/c his stoma is smallish and so this helps pop it out more.  Here you can see the scale as well.  Bags come in all different varietis and some are not clear, etc…..  The clip on the end (long tan thing at end of bag, he uses this to drain throughout the day, he is draining every 2 hours or so.  He only changes the appliance (i.e. the full bag set up) twice a week).  There are tons of different bags for different types of stomas, Mark’s stoma is loop ileostomy which means it is smallish since it is temporary.

We’ve recently learned from another jpoucher that there are bag options where there isn’t a clip at the bottom but velcro.  If you aren’t happy with your hospital register bag and equipment, do some searching because there are MANY bag options.

Pic 7: ostomy bag with green poop

Here is a fairly graphic photo of Stumpy in action.  The bag is located towards the inside of his leg so you can empty the bag in the toilet without hassle.  This bag is really full, normally you don’t leave it so full b/c it would be heavy and run the risks of ‘blow out’.   Mark’s hand is by the bag to give you an idea of scale.  In a moment of comic genius our friends Marianne and George saw this photo while Mark was in the hospital (sending photos to friends via cell phones – we were all curious what this sucker was going to look like). And they sent us a picture back, or Marianne’s hands next to a poopy diaper freshly made by their baby Lil’ G.  I wish we still had that photo!  You must be able to find humor in this situation if you are going through it.

Pic 8: stoma, green poop and thumb for scale

Mark started creating output from Stumpy the Stoma the following day after surgery.  It was pure liquid and green (b/c he was on a liquid diet, not sure why it was green though – I know the drs. explained why but can’t recall now).    I put my finger in the picture so you can have an idea of scale.

Pic 9: I’m walking .. yes indeed…Day 2 night

The same advice from other jpouchers was to ‘walk, walk, walk’ to get out of the hospital sooner and speed up the healing process. There were many walks around the surgery/oncology floor.  There were even a few late night walks when Mark couldn’t sleep and had ancy legs, those were fun walks b/c the floor was quiet but usually there was someone else up walking too).  With a private room, you can have a guest stay the night with you which for this type of surgery is really nice since you are largely unable to take care of yourself easily (can’t put on socks, etc).  And the nurses do a great job taking care of you, but you do need someone around to straigthen your gown, sheets, and make sure the cathedar is draining well and not backing up.  You know, all the stuff a loved one can help with.

There was another young man on the floor (in his 30s) and he had gone in for an appendectomy (sp?) and found out he had cancer that was hitting part of his colon. Now he has part of his colon missing, and it all happened to him overnight basically. He was having a hard recovery physically and it seemed he had little social support b/c he rarely had visitors (you get to know the others on your floor from doing laps).  I was wearing an OSU sweatshirt and he had gone to OSU, and from there he took a shine to us, and us to him. It was a reminder of the awesome support group we have, and how thankful we are for everyone who has supported .
Pic 10: Walking with foley on robe Day 4

Here he is upgraded to walking without the stand since he has no IV but he still has his foley catheder, nevertheless, look at that grin.   And the art of getting the catheder to work right, talk  about a challenge (his cathedar would not drain into the foley bag and it would get backed up into the tube which made him feel really uncomfortable like he had to pee because the urine was back up, not a big detail but did take time to figure out).  He was such a good patient b/c he was so patient with all of it, and he patient with me trying to document the process of surgery, etc. We felt very alone going into the surgery and wanted to document the journey for others in our situation.   His positive attitude was incredible during this whole process and made it incredibly easy to care for him through this.

Pic11: Dressed in normal clothesFINALLY!

Finally in regular clothes right after the foley (i.e. catheder) came out!  Day 4.  He didn’t mind the catheder coming out, it happened quickly and was done by a nurse right there in the hospital room bed.  It was explained to us that this surgery can traumatize the bladder since it is near the surgery work area, and it takes time for the bladder to ‘wake up’, so they didn’t want to rush removing the catheder.   Mark was lucky b/c his bladder woke right up after the catheder was removed, and he was a peeing machine right away, but it was weird since he hasn’t just pee’d in many years since he always went w/ his frequent BM’s.

Pic 13:  Stoma, Incisions, Day 8

Here is a shot of the belly and stoma on Day 8.  You can see he has a bit of irration from the adhesive of the bag wafer (not sure how to treat that, any suggestions are welcome :)

Oh, the question we asked was how much does the large intestine and rectum weigh? Only a few pounds is the answer, it is about 5 feet long but light weight.  And no, after the colon is removed the stomach does not collapse and fall in, a person without their colon does not look like they have no colon!

Again, these are his 5 incisions, and his stoma will change size b/c it is swollen right now. Apparently stomas change size as your weight fluctuates.  Stomas bleed some when you clean them or touch them, but it doesn’t hurt since it has no nerve endings.

At the south incision in the pelvic region there is some swelling on the left side around the incision, that is fluid left over that was once draining from the drain tube.  It makes a funny hollow sound when he taps on it. The doctors said if the incision becomes red or painful to come in and have it drained, so far not red or painful.

Pic 14:  Clean bag and dressed, Day 8

8 Days after surgery showing Ileostomy Bag

Spending some time recovering, he is clean out of the shower and doing well on Day 8.    He has lost 7 pounds since he entered the hospital, so he is a bit thinner than what he was in the first picture.  In the hospital his first poop output was green, now it is brownin’ up, but seems to change color with the food.  And the smell when he empties the bag is something special, it has to do with the waste coming straight from the small intenstine and the digestive enzymes.   Now, you must understand that the stoma is a living thing, it is his insides now on the outside, and this sucker breathes, moves around and really has its own identity. This is a unique experience gettting to see how our bodies constantly our creating waste, but also the meaning of ‘alive on the inside’ has new meaning when you see our insides working.

Learning to change the bag at home after surgery was interesting and was definately a team effort. Mark did it on his own but until he was better at the whole changing thing, I would help to try to get the flange on before the stoma spit up. We learned from Jason PA (see Photo Set 2) that you can wrap the stoma in a wet cold paper towel that will hold any poop while you clean the skin, etc..Also, have you heard about the marshmellow trick? (Marks favorite part of the stoma was that before bag change outs he would 3-5 big marshmellows they stop you up for about a half hour. He didn’t do this till a few weeks after surgery though and he was eating more normal. JUST DON’T GO THROUGH THIS ALONE – Let someone you love help you with this transition, its a big deal and easier to handle if you can share the surrealness of the situation with someone you love.

If you are so curious we do have a live action photo of the poop machine in action that I recorded on the cell phone, very ;ow resolution but if you gotta see how the things moves and works before you are proud owner of your own you can watch this very short video of stumpy pooping at around 20 seconds.[youtube=]

Update day 9:  I feel exhausted still, today was the first day I took a short drive in the car (someone else drove) and was exhausted and uncomfortable.  My lower back hurts from laying down since my sleeping positions are limited still.  I’ve been walking and walking but still get tired.   My poop is thickening up, but it is really a reflection of what I eat. I changed from a 2 piece bag to a 1 piece bag and that is working better for me now.

Update day 16:  No complications, and I am so thankful, and I attribute this to my awesome surgeon and his possee.  I’m not needing to nap, and I’m interested in going and being busy. It is a new concept to leave the house without worrying about ‘bathroom’ needs.  And I did my first drain of the bag while out running errands, it wasn’t too bad, only took 2 minutes or so, I’m sorry to have unleased the stench on the general public.   I do feel like I’m in ‘recovery’ where I don’t feel UC anymore but I do get worn out, and the reality of living with my stoma has kicked in. At first, I was free of the disease which is/was incredible, but now, there is the stoma. And as thankful as I am for my new renewed health, this will take some getting used to, I mean, my small instetine is hanging OUTSIDE my body and I’m pooping off my belly.  Takes some getting used to, but UC was much much worse.

**A common question that we were worried about and is often asked is about Mark’s ability to obtain/maintain an erection or issues with ED.  Mark hasn’t had any issues with erections be it getting them or maintaining them. In fact still in the hospital all bits were wanting to work even though the catheder was in the way (that was a good sign, we cheered – even the surgeon asked in a follow up about erections).  We loosely recall talking with the surgeon that often issues with ED are emotional in nature more than physical after this type of surgery. Although the surgeon does have to be careful not to cause damage. I haven’t had my sperm count tested yet but was told it should refresh itself to healthy sperm count (hopefully) 2 months after surgery or so.

Next step in recovery process:
Step 2 surgery is pending until his jpouch heals, the doctors will decide around week 10 in recovery if he is ready for Step 2 or not.  Once he has step 2, the stoma will be pulled back into his body (so no more external bag) and he will begin using his jpouch (small intestine reconstructed and connected to anus for draining of waste). Here is the link for the next set of photos of living with the ileostomy (the 3 months between his step 1 & 2 surgery and here is the link to the takedown photos:

© 2008 All Rights Reserved

© 2008 All Rights Reserved

104 Responses to “Photos 1: Colectomy”

  1. avatar

    Suzie Walker says:

    May 29th, 2008 at 11:52 pm

    Thank you for sharing this information. How old is your son? My son (residing in California with his dad) is having an illeostomy tomorrow at Cedar Sinai Hospital. He is 25 years old. Diagnosed at age 10. Has had 2 surgeries (resection) and a lot of problems. On a lot of medications. I just spoke with him (I live in Florida and just found out today he is having surgery) and his spirits are good! I told him about reading this. He understands the procedure (his may be permanent) but at this point wants to be able to feel good and stay out of the hospital. He goes in at least 4 times per year for the past 4 years.

    Thank you again. My prayers are for all with Crohn’s. It is an awful disease.

    Suzie Walker


  2. avatar

    mdhilton says:

    May 30th, 2008 at 4:14 am

    Hi Suzie,

    I hope your son has a speedy recovery from surgery so that he can get back to his old healthy self and get on with his life. I am 32 now and was sick from 24-31 years old with ulcerative colitis. Megan is my wife, not my Mom, but I understand your concern and your son is lucky to have a good support system. If he is headed into surgery, we all found the best support group. It is positive, informative and a REALLY helpful for all stages of dealing with this surgery/recovery and living with new jpouch or ileostomy.




    Thom Reply:

    Dear Mark, I had very similar surgery’s done in 1996. I can sure relate to most of your story. Getting used to the temporary colostomy is a challenge and something very few people realize how much work it is to keep clean and maintain. The first time I released gas in my colostomy bag in a company meeting, I was mortified. I have since come to realize that it’s not a big deal. I have had 2 perforations in my pull through pouch since the original surgery’s but it’s been more then ten years with the only remaining challenge is the shortened bowel length and the almost constant diarrhea. I’ve tried a lot of things but nothing seems to slow things down. I wish you well and hope things are going well with your recovery.


  3. avatar

    Tricia Stoddard says:

    June 14th, 2008 at 2:08 pm

    Thank you, SO MUCH, for sharing your journey (complete with photos) with us. My husband is undoing surgery this coming week for rectal cancer and – as thankful as he is that surgery is an option with a very positive prognosis – he is absolutely beside himself with regard to the ileostomy. While I know he’ll get through it, he is scared witless. He is normally such a positive dynamo – this is really troubling him. Without going into all of the psychological aspects, your story has helped ME to understand what we’re about to encounter together. I will, certainly, be there and support him in every way I can; I only hope I can measure up to the care and support you have given Mark through his UC and surgery. You have been extremely courageous, like only a mom can be I think – but you have been an inspiration to me. Mark is lucky to have a medical team that has worked their own special kind of magic for him – and he’s lucky to have the support of his mom and, obviously, scads of friends. I wish you both well and, because having viewed and read this, I am encouraged that our journey will not be as dreadful as my husband is thinking it’s going to be.


  4. avatar

    Tricia Stoddard says:

    June 14th, 2008 at 2:09 pm

    I’m sorry – I meant to say my husband is “undergoing” surgery – not undoing! better learn to use spellcheck regularly!


  5. avatar

    Megan says:

    June 14th, 2008 at 4:25 pm

    Hi Tricia,

    Sorry to hear about your husbands struggles and difficult diagnosis. He is fortunate to have you and have you doing the research and being willing to support him. I know that with Mark is took time to accept the surgery and the upcoming changes to his body. But for us we probably had more time before the surgery than your husband since his cancer diagnosis was likely unexpected and surgery arised quickly. Part of the reason for the photos and journaling was to help Mark and all of us cope with his changes by getting it out there and not hiding the reality. Also, thanks for your support of our site, and the picture above is indeed of Mark’s Mom and Mark, but on the front page is of Me and Mark and I am his partner of 14 years, and I am the voice in the surgery journaling. So, I understand your struggle as the wife, just be sure to take care of you in this process! If you feel sad, blue, anxious or anything get help so that you can stay strong for him and your family.

    Will he have a permanent ileo or are the doctors doinga jpouch?



  6. avatar

    NuffinButtTrouble says:

    June 21st, 2008 at 8:29 pm

    Mark & Megan,

    thank you for sharing this information to someone like me who has UC; it takes great courage and tremendous love to document your experience and share it with strangers in the hope that it will make someone’s life better.

    Thank you from the bottom of my heart.



  7. avatar

    Sunday, June 29 « Colon of Carmen says:

    June 30th, 2008 at 6:30 am

    […] And, I found a photos and blog of someone who kindly shared her photo after the temporary ileostomy. Thank you so much […]

  8. avatar

    bellyluv0sofine says:

    June 30th, 2008 at 6:50 am

    Wow, this is difficult to read because I know that I will have this surgery soon. Thank you both, Mark and Meghan for sharing such intimate details of your story. While I am a little frightened at all the complications of what what can go wrong, it is nice to see someone so young and healthy survive this. This is such a wonderful gift you have given to other sufferers. Knowledge is power and I feel a little more at ease reading your story. From the bottom of my heart, truly, thank you!!



  9. avatar

    mark says:

    June 30th, 2008 at 7:25 am

    Hi Carmen,

    When is your surgery? And are you having a two step lapro like Mark? Sounds sill to say to you now, but you’ll be back belly dancing before you know it (and I mean it). Just be prepared for the stoma so that when you wake up from surgery and pull up our robe you are willing to accept your stoma (be sure to name it). Our friends named Mark’s “Stumpy” but the best two names of stomas I’ve heard are “Lil’ Mofo” and “WeeWillie” – Also, be sure to get out of that bed as soon as you can (day after surgery) and walk. That first night right out of surgery Mark was only able to dangle his feet off the side of the bed, but he was wanted to walk since he had heard it meant a speedier recovery. His pain wasn’t too bad, so don’t fear pain, and he was lucky and had few complications. But like he likes to tell the story, any complications and surgery pains didn’t matter because the very day after surgery he didn’t feel sick anymore. Whats funny is the woman in this UC to jpouch surgery video says almost the same thing Mark did:

    Do visit that was our life life through the surgery process. And as I’m sure you’ve noticed we’ve really gained a lot of healing by sharing our story with photos and journaling. Even if not for public viewing you may want to consider documenting your journey and sharing it with friends and family, we found it helped them truly grasp the magnitude and made them more comfortable accepting the reality of Mark’s situation – a win win for all of us. But if you do document and want to go public, we’d love to link to your site, we are hoping some one can fill in the missing pieces of our blog like the prep into surgery (weeks before). And also to show the surgery journey from the female perspective.

    Keep us posted and hang in there!


  10. avatar

    Brenda says:

    July 10th, 2008 at 3:42 pm

    Hi Megan and Mark,

    I am a 33 year old female and have been suffering from UC since i was 26 — well that was the official diagnosis. I can remember having problems as early as about 19 years old, in college.

    I really appreciate your blog as I will be going in for surgery next month (Aug. 14). I am really scared about the surgery in some aspects. I’m afraid of having the stoma. I’m also having the 2 step lapro. procedure and have been told I will have a bag for 3 months.

    I have been looking for as much information as I can find about this surgery. Its a big step – to commit to … though it can’t possibly be worse than life with UC (accidents are the worst!)

    So thank you for posting this blog. I am thinking about creating a blog to journal my experiences, as well.

    Wish me luck!


  11. avatar

    mark says:

    July 10th, 2008 at 9:45 pm

    Hi Brenda,

    You’ve been sick along time, it’s time for you to get back your health and feel good again. You’ll hear it from me, and Carter said it also that almost immediately after surgery you won’t feel UC anymore – you will feel surgery, but not UC and that feeling is incredible! If possible, do try to warm up to the stoma as much as possible before your surgery, look at these photos, show them to family/friends and do whatever you can to normalize it as much before you have it. The only good thing is that you’ll quickly realize that though the stoma is, well, the stoma is strange, you will realize quickly tha the stoma makes you feel better which makes you like the stoma a LOT faster :) Also for me the stoma 3 months served a great phase for me to see that if for some reason my pouch fails that living my life with a permanent ileo wouldn’t be bad at all.

    If you haven’t already you may want to visit, you’ll find a great support base there for getting you through the ins & outs of surgery and recovery.

    Lastly, if you do ever want to blog your journey either send us the link to connect too, or we’d be happy to share a page with you like we did Carter. We so badly want to show female experience through this — also if you do document it, maybe you could document the pre-surgery prep like the visit the week before, the physical, etc….we didn’t document that and people often want to more info abot that process. We have found sharing our journey has been one of the best healing tools we found.

    Do stay in touch and let us know how you are recovering!



  12. avatar

    Brenda says:

    July 11th, 2008 at 6:10 pm

    Hi Mark,
    I wasn’t sure where to e-mail you. I just started my blog. Its a little over a month until my surgery. My link is below. Its still basic but I plan to include photos, etc. and I’ll do what i can to document my pre-surgery experiences.

    Hopefully my experience can add to the big picture in some way.


  13. avatar

    ryan says:

    July 23rd, 2008 at 8:36 pm

    hi, I know how much this condition can suck at times. I have had it since I was seven years old. From the start I was always very sick. i would be in and out of hospitals for days months and the longest, a year. I have done every medication that is out there but the only one that ever helped was prednisone. but as you know the side effects were to harsh for me to be kept on it for a long period of time. as the years went by i became more and more sick. i tried diets natural supplements, everything. but just last year was the worst flare up yet. i was in the hospital for about 3 months. The doctors only had one more medication in store witch was humira. if that did not work i would have to do the surgery.The humira did not work. so the doctors decided the best would be to have the surgery. i am great full that i did have my parents along my side from the very beginning they risked every thing to get me better. but we all decide it was enough. i was actually considered one of the most severe cases of uc in that hospital. i was very nervous and scared but at the same time relieved to know i would feel much better to do the surgery. the surgery was done in December 2007. it took me about 10 days to recover from the surgery. but about 3 months until i was back to my self. it is July 2008 know, i am 15 and i am feeling much better. Summer is almost over and i will be going back to school. the only thing i am worried about is how all of my friends will react to the stoma. What do you think……. .. .


  14. avatar

    Megan says:

    July 23rd, 2008 at 9:06 pm


    Glad to hear you are doing well from surgery, sorry that you’ve had to deal with so much at such a young age. Regarding your question about your friends and your stoma; part of the reason we started Mark’s photo blog was because we wanted to normalize his stoma and the surgery to our friends and family. We figured what better way to make it normal than to not HIDE anything about the process, hence, the photo journal and Mark and his stoma in full glory. What we found from this was that when Mark came home from the hospital our friends/family were asking if they could see the stoma in person, they had seen photos and now they wanted to see it in person. I wish I had photos of it but during his “no colon welcome home party” he had 3 people bending down watching his stoma work – We took a “weird” situation and made it into something curious and positive – a friend even named the stoma “Stumpy”.

    I would recommend you consider a few things: 1) a Photo/story blog of your reality, share it with friends and family, education is the only to help them accept your health situation and 2) If you don’t want to share your own photo story, share Mark’s and Carter’s with your friends so that they know it happens to other young healthy people just like you. 3) Consider throwing a “No Colon” like party, instead of hiding your situation, it is time to celebrate your freedom away from UC – a party is well in order! We even had a no colon cake :)

    Mark and I would be happy to share your story with photos on our blog, just like Carter’s if you’d like to do something like that, just let us know!

    Congrats to your new health!


  15. avatar

    mark says:

    July 24th, 2008 at 5:46 am


    will you get a jpouch at some point or are you a perm ileo?



  16. avatar

    Robin says:

    July 31st, 2008 at 11:27 am

    Mark and Megan,
    Your courage and willingness to share your story and photos is remarkable. I truly appreciate it.
    I am a 41 yr old woman with indeterminate crohns or colitis — no one is sure. I was diagnosed 15 yrs ago. After lots of flares and meds and a handful of hospitalizations, plus two babies, I just found out that I have high grade dysplasia and will need surgery within a month. I am left with the choice of a jpouch of permanent illeostomy. The doctors seem to lean toward the jpouch. I fear the complications (and if I have crohns, it will be a 50% chance of reoccurance), so I am leaning towards the illeo. The “peeled cherry tomato” is the scariest thing to me. If it just looked skin-like, it would be easier to digest (no pun intended). Lots more research to do, but reading your story has been very helpful. I will also visit the related links you reference to learn more. Thanks again.


  17. avatar

    mark says:

    July 31st, 2008 at 2:53 pm

    Hi Robin,

    I am glad they caught your dysplasia now and are getting that colon out so quickly. The diagnosis you’ve got is tricky, did you read and/or listen to the webcast on avoiding the wrong diagnosis? See the link below, I too as many others have had the iffy diagnosis of indeterminate UC/CD —

    My diagnosis was turned back to UC b/c after the blood test that showed blood markers for CD, they then sent me in for a test on my small bowel, and found that I had no signs on ileum or higher, and in the past all my symptoms had always been exclusively UC.

    I do know that many people on the site like Lizz & Michelidefina have been after the fact diagnosed iwth CD and hade trouble wiht their pouch. You should post your story with some questions on under “General Discussion” and see if people with your similiar situation can shed some more light on the issue for you. You will find some good support there for your situation, since yours is potentially more complex.

    Do check back in and let us know how your surgery and recovery go. Also, let us know if you decide on a perm ileo or a jpouch.

    Take care,


  18. avatar

    Brenda says:

    August 7th, 2008 at 9:23 pm

    Hi Mark,
    I was just re-reading your documentation of surgery 1. Could you guys e-mail me the cell-phone video of the stoma in action? I’m feeling a little squeemish to view it but I feel that the more comfortable I am with everything before I go into surgery the better I will handle it mentally.

    Thank you so much! I don’t know what I would have done without your blog!



  19. avatar

    Megan says:

    August 8th, 2008 at 2:34 am


    Yes, your date is growing closer! I swear in life waiting is the hardest part, but you’ll be so pleased to be in recovery and moving on with your life. Okay, I just sent you and email 30 second video of the stoma in action, if for some reason you don’t get the email, let me know and I’ll resend.

    Hang in there and be sure to remember you will no longer be sick once the surgery is finished and that will be incredible :)


  20. avatar

    Casey says:

    August 12th, 2008 at 9:08 am

    Hey Mark and Megan,

    You’re website is the most helpful webiste out there for those of us about to experience this surgery. My colectomy is scheduled for 28 August 08 at the Mayo Clinic in Scottsdale, AZ. I’ve tried prednisone, asacol, Rowasa, steroid enemas, entocort, and Rowasa. I’m really scared about the surgery. I have been talking to two people who have had the j pounch done, and they both say they’re happpy with it, but all I read on and is negative responses. What do you think?


  21. avatar

    Megan says:

    August 12th, 2008 at 3:11 pm

    Hi Casey,

    Sounds like you’ve had a long journey to getting your health back. It is natural to be scared for your surgery, especially when you go the sites like where it does seem negative somewaht. What you should consider is that when people visit support boards like they are inneed of information and usually b/c they are having some type of problem. People tend to move on with their life when they get their health back and not visit which makes sense if you are healthy – why hang out with others talking about their problems? Recently someone on asked for good stories and 24 posts later there are many happy people our there:

    I think it is important to be aware of the possible complication, but I think it is good to consider all the good that come of this surgery for you. Mark and Carter are both living healthy and well these days. You may want to read the Best Case Scenario post and comments One of the big reasons for our blog is to show that htere are good results out there, we saw all the negative only before the surgery and wanted to provide a positive resource. Of course these surgeries and recovery are not easy, but there is a good outcome for many people.

    Also, you may want to follow Brenda’s journey into surgery on Aug 14 she is scared but also like Stephanie, she is really ready to feel healthy again. Before surgery is a scary time for sure, but it is also an exciting time in that you have your whole future ahead of you with a good chance of feeling healthy.


  22. avatar

    Johnnie says:

    August 27th, 2008 at 6:23 am

    Hey Mark,
    Im 17 and im probably going to be getting the surgery sometime in September i was wondering did you feel any pain internally. Specifically where it attaches at the bottom. I will probably have more questions later. Thanks for the site its really helpful.


  23. avatar

    Jaclyn Suri says:

    September 2nd, 2008 at 9:16 pm

    Hi There!

    I wanted to thank you guys for sharing your journey. I am having ileosomy surgery on the 11th of this month. I am truly terrified. I am so scared that I won’t be able to handle the emotional part of it. I have had Crohn’s disease for 15 years. Though J pouch surgery is not usually an option for Crohnies they may still be able to do it on me because of the location of my illness. That is what I am praying for in the end. They wont know until after they open me up. I am so tired and sick all the time. I am looking forward to some change. Hopefully this will be for the best. How are you doing now? Have you had any problems since your take down? Anymore blockages? I hope you are well.


  24. avatar

    Michael says:

    September 25th, 2008 at 3:55 pm

    Thank you for sharing this. I have been diagnosed with colon cancer and my J pouch surgery is scheduled in two weeks. I hope your husband is doing well.



  25. avatar

    roxy b says:

    September 30th, 2008 at 4:44 pm

    my 21 year old boy frend has got 1 he shud b getin his reconsructed in 2years after he finished uni


  26. avatar

    ben says:

    October 2nd, 2008 at 5:08 pm

    great story!! change a few minor details, and its me!! just last week. its been 8 days since ileostomy extravaganza 08. the getting up and walking thing is huuuuge. it took me a minute to dissassociate the bag from my body. i was being very tender with it and thought for some reason it could hurt if i do something to it. now, its just a plastic bag. no biggie.
    i do see what you mean by getting over the stoma in public. ive bumped it already and thats not good. what can you do though. just be a safe as you can. ive heard of peoples sticking out 5-6 inches after hitting it or lunging a certain way. well, just wanted you to know someone else out there is going through the same thing!! hope all is well. ben


  27. avatar

    Catarina says:

    October 7th, 2008 at 5:10 pm

    Hello Mark! my name’s catarina, i’m 24 years old and i suffer from UC since december 2006.. my story is similar to yours, all pains and loss of weight, etc.. i have my first take down scheduled to monday.. i’m very nervous and anxious.. oh my god! is it really the best choice Mark? the doubts are appearing..
    thanks for your blog! it’s very helpful! kisses – catarina


  28. avatar

    Catarina says:

    October 7th, 2008 at 5:13 pm

    sorry.. i forgot to tell that i’m from Portugal.. here these kind of surgery are not so frequent as in USA.. and we don’t have many opinions and testimonies about it..
    thanks again


  29. avatar

    mark says:

    October 8th, 2008 at 8:01 pm

    Hi Catarina,

    Wow, your surgery is so soon. I think making the decision to have the surgery is way harder than the actual process of surgery. Of course being anxious, nervous is normal, but also try to find some peace that you are entering a phase of new health, and that you’ll no longer be sick!

    If you ever want to share your story on our blog here, just write me and let me know. We’d love to have an international perspective (email:

    Good luck and keep us posted,


  30. avatar

    Wendy says:

    October 10th, 2008 at 6:02 pm

    Thank you so much for posting this. MY 16 year old daughter will be having a 3 part surgery for UC next week. She is too sick for them to take everything in one operation, so they are doing 2 to take out the colon and then the reconnection (Jpouch) I can’t tell you how much reading this helped us both know what to expect!


  31. avatar

    Megan says:

    October 11th, 2008 at 4:00 pm

    Hi Wendy,

    Sorry to hear about all your daughters struggle. Having the surgery should get her back to life of a normal teenager. On this site both Steph and Carter had their surgeries at 21 years old. And on the there are other young people if she wants to touch base with people her age. Also, be sure to use as a great source of info for support and learning about anything that comes up.

    Take care,


  32. avatar

    louise says:

    October 13th, 2008 at 4:21 am

    hi mark,

    thank you so much for your step by step story about your illiostomy and stoma. i am a nursing student and we learnt how to care for stomas in our class today, and your story has really helped me see it in a real-life situation!

    thank you again

    – louise in australia 😀


  33. avatar

    Vanessa says:

    October 14th, 2008 at 11:26 pm

    I am also a nursing student and just learned about stomas today!
    I really cheerish your your story posted online, and am so happy for you, for having a supportive mother and partner, Megan.

    Thank you for the posting!

    Vanessa (Canada)


  34. avatar

    Megan says:

    October 15th, 2008 at 6:22 pm

    Hi Vanessa & Louise,

    We are so glad that we are able to provide the info for you as nursing students. I know I’ve said this before on this blog, but NURSES ARE THE RECOVERY! Mark’s nurses were so incredible and especially during the first surgery where they taught him to change the apppliance, etc..

    Such an incredible career, so emotionally and physically challenging and yet helping people heal is worth it, I would think!

    With much respect to all nurses,


  35. avatar

    Deb says:

    October 18th, 2008 at 2:52 am

    Thank you Mark and Megan for being so kind as to share your experience. I can’t imagine how many people you have helped educate, calm and help.

    I am lined up for my step #1 surgery on November 11. I have a totally insignificant question, but neither my husband nor I can come up with an easy solution.

    With all the IV’s hooked up (I am not quite sure what exactly all will be hooked up and how) what type of robe did Mark get to do his hall walking? Did he just run the IV lines up the arm of the robe and out the top? Or would you suggest maybe modifying a robe on our own to get it on and off more easily for short, frequent walks? I know, probably this is the first time you’ve been asked THIS one!

    Thanks again,


  36. avatar

    mark says:

    October 18th, 2008 at 4:39 am


    That is an AWESOME question…out of all the things I’ve been asked, you are right this is the first time asked about the robe, but it is a really good question. I don’t think you’ll need to modifiy anything, I just wore a thinner robe of a cotton or flannel material(not terry cloth or big texture for ease of use), and I only put one arm in the arm hole. The arm with the iv’s (you should have only 1 arm with IVs – atleast I only had one arm with IVs for my surgery) was the one that I kep out of the arm, so if you look at Pic 9 in this series you can see that my left arm that is hidden under the robe is the one that has the IVs in it (look closely at the photo you can see the two iv tubes up to the left arm hidden under the robe).

    Plus, you’ll have your catherdar and iv’s around day 4 or 5 so you’ll only have a few days of having half robe. and to be honest you’ll be doing laps in the hosptial and you’ll quickly get to know the other patients walking on your floor (plus, at 3am you may see more butt than you want on one of your neighborbors when they don’t get the robe on right over their IVs..hahaha..)

    Do let us know how your recovery goes, and you and husband can holler at any point. And oh yeah, if you need any basic info there is also the great support board,

    Heal well and get back to life,


  37. avatar

    Jan says:

    November 3rd, 2008 at 5:25 pm

    Hi Mark,

    I also want to thank you for sharing your experience.
    I’m from Germany, 25 years old and i have been suffering from UC since 20 years.
    During the UC I had not so much problems with it, but now my intestinal cells are transformed so that I could become cancer in the future.
    This is the reason why I’ll have my first surgery on November 12.
    With your step by step story it’s much easier to understand what will happen to me.

    Thanks again


  38. avatar

    mark says:

    November 3rd, 2008 at 7:06 pm

    Hi Jan,

    Oh, wow..that is a long time living with UC! That is hard to know your colon cells are changing, but it is good that your doctors caught the changes before colon cancer could form – that is excellent news!

    There are lots of great support groups out there, and since your in Germany, you may find the jpouch group out of the U.K. useful,

    I use which is excellent, but tends to lean more towards an Northern American group of jpouchers.

    Keep us posted and heal well – be sure to stay postive to help speed up your recovery!



  39. avatar

    Thomas says:

    November 17th, 2008 at 8:11 am

    Hi Mark,
    Just wanted to say that you guys have a great web site here and wanted to tell my story. I’m a 35 year old gentleman from Houston, Texas. I was first diagnosed with UC when I was 14 years old (20 years) I know that might seem long, but in the past 10 years I had been taking care of the UC natually. Change of diet and lifestyle played an important role for me. I basically side stepped the pharmacudical part of the disease. It was great…up until last August. I started to bleed. I thought I was doing good with my diet, but had to look at it carefully again. I basically slipped, and with UC you can’t slip you’ll end up falling all the way. Which I did.

    After getting a colonscopy back on September 25th of this year I find out 5 days later on October 1st that I have Stage II Colon Cancer. One tumor in the Sigmond Colon and one in the Rectum.

    They want to do a Total Colectomy, which mean I would have the Stoma. They would then perform radiation on the Rectal Tumor. I would then come back for the “take down” surgery after the tumor has decreased in size.

    My surgery for Total Colectomy is on December. 1st. In the meantime the doctor’s have me on Prednizone (The Evil Drug) since Nov.6th (I’m tappering down the dose now), Asacol and a Hydrocordizone Enema.

    After seeing your pictures I have put most of my surgery fears to rest (I’m not going kid you I won’t enjoy the post-operative pain though) and I can realize that I feel better after the tumor is out of me and I can continue living my life. I’m in good spirit’s.

    I just want to be off of the damn Prednizone, lol, the tappering sucks, but it’s needed. Hell, that’s the effect it has when your writing an e-mail at 2:11am in the morning, lol.



  40. avatar

    mark says:

    November 19th, 2008 at 9:58 pm

    Hey Thomas,

    That is great that you were able to abate symptoms by using natural methods. I tried natural for me, but mine was too far gone quickly that I had little luck. We actually posted a link for others to access about the use of alternative meds and stuff for UC….

    Oh yes, the prednisone dance, Megan used to say I was like a fish out of water flooping around in the middle of night in bed b/c of the pred. The good news is that after your surgeries and all you’ll not need “The EVIL DRUG” any longer.

    I’m glad to hear the photos help soothe some of your surgery fear, you’ll be suprised probably by the lack of pain, I was thinking it was going to have a lot more pain involved but it wasn’t what I thought –

    Good luck with the recovery, let us know when that tumor is gone and you’ve kicked that cancers butt…


  41. avatar

    Amy says:

    November 23rd, 2008 at 4:52 pm

    Thank you for your information. My 10 year old son is facing a 3 part surgery tomorrow. We are both very afraid this was very helpful to let me know what to expect.
    Amy in Alabama


  42. avatar

    Thomas says:

    December 1st, 2008 at 4:23 pm

    Just wanted to give you a surgery update. As of today I will be going for open surgery on Dec 8th only because this is Colon Cancer. I feel the doctor needs to “see things” when operating. If it were anything else besides Colon Cancer I would have it done Laproscopicly.

    Interestingly enough, when talking to the Laproscopic Surgeon he said he wouldn’t need to make a bikini line incision after all. He said he would drag my Colon out through my anus. Have you heard of this before? Cuz I haven’t.


  43. avatar

    Parker's Mom says:

    December 5th, 2008 at 4:30 am

    Thank you so very much for all of the info and especially the pictures. They were of great help as my husband and I were looking at our 22 month old son’s stoma and trying to figure out if everyone’s looked the same way. Regardless of age, the are remarkably similar!


  44. avatar

    Parker's Mom says:

    December 5th, 2008 at 4:30 am

    Thank you so very much for all of the info and especially the pictures. They were of great help as my husband and I were looking at our 22 month old son’s stoma and trying to figure out if everyone’s looked the same way. Regardless of age, the are remarkably similar!


  45. avatar

    Megan says:

    December 5th, 2008 at 9:32 pm

    Hi Parker’s Mom,

    What a journey your family has been on – I can only imagine. Now that your son is living with his stoma is his health improved? Will he be getting a jpouch or have a perm ostomy?



  46. avatar

    Marty Cashmore says:

    December 19th, 2008 at 8:29 am

    I am scheduled to have my rectum removed and will be wearing a
    bag for the rest of my life. Any other info or tricks you used
    will be helpful – I’m a male age 63 and am absolutely terrified of the ‘bag’ as I’m extremely sensitive to smells. Any ideas or help will be greatly appreciated ! Thanks !


  47. avatar

    mark says:

    December 21st, 2008 at 1:54 am

    Hi Marty,

    The idea of the bag is I think shocking to most people right at the beginning, but the main thing I can say is that you can’t fight it. You have to accept it and realize it is helping you be healthy. For me I forgot pretty quickly that the bag was there and just got on with my life being healthy. As for smell, my bag never smelled other than if I had gas in my bag and I went into the bathroom to empty the bag. I don’t think you’ll need to worry about smell, plus some people that are worried about smell put some type of grandules in the bag to absorb smell. You should look into the forum board at United Ostomy Association here Also, Shaz has a great ostomy support forum at

    Stay well,


  48. avatar

    Katie says:

    December 26th, 2008 at 5:01 pm

    Hi My name is katie i’m twenty and I just had a whole Colectomy and a ilosyomy bag for three month its on a j loop I didnt get my surgery done by laser.I was also on prednisone, and humira also it was good to see someone else to share a similar story i was the youngest patient on the floor also lol! PlZ keep in touch!


  49. avatar

    nat says:

    December 30th, 2008 at 11:58 am

    thankyou for making me feel a little more at ease with my own situation.
    As embarassing as it is for a teenage girl, I have to admit that there is a sense of “battle scars” which doesnt seem to be a large problem with him at the moment. Although I have had necrotilzing enterocolitis since I was born and as a result suffered a considerable amount of time attached with a colostomy bag, this makes me feel like I’m not the only one, or that I don’t feel as abnormal or different.
    I have had 5 major operations to fix it (this along with other issues) so it is really comforting to know that someone understands and will not be judging or treat you differently ie. bullying… just because of the hard times, the constant hospital care and check-ups.

    Again, thankyou for this detailed guide, allowing me to understand visually what the procedure entails since this was all done at a ver yearly age and I do not remember everything although the physical scars remain.


  50. avatar

    Megan says:

    December 31st, 2008 at 10:03 am

    Hi Nat,

    It is great to hear from you. We are so glad that the site has helped you even so long after the fact of you having the surgeries. I haven’t heard of necrotizing enterocolitis before but it sounds like it has really taken a toll on your health over the years. It would be difficult as a teenage girl to deal with all this, do you have any good support groups of youths dealing with this – I can send you that info if you’d like. Also, you might see on our page that Gil is 16yrs old, and Casey is early 20s, and they may be good contacts for you.


  51. avatar

    Katie says:

    January 11th, 2009 at 12:11 pm

    Hi I’m Katie. I was diagnosed with UC in the fall of 2006. I had my surgeries in August and September of 2007. I had a lot of complications with my surgeries and ended up spending 6 weeks in the hospital. I have been fully recovered for a while now. I have issues from time to time, but I continue to switch between antibiotics. This is really cool that you showed the process of you entire surgery. I also like that you named your stoma Stumpy. Mines name is Herman and I still refer to my small intestine as Herman. Before I had my surgery I met a boy who had the surgery prior. He really helped me to understand what it was going to be like. After I had my surgery the child life people had me talk to a girl a few years younger than me that was going to have the surgery. I know and understand how much easier it is to understand what you will be going through by talking to other people that have had the same surgery. What you have done here has helped so many people and I’m really thankful for it!


  52. avatar

    Sue says:

    January 15th, 2009 at 8:00 am

    Hi Mark & Megan- I came across your story a couple of weeks ago, as I was looking for information because my 12 year old son was getting ready to have this surgery. He had the surgery a week ago now on Jan.8th, and I must say, reading your story and seeing the pictures has been a tremendous help. It was if I knew what each step was going to be next. His surgery took a bit longer so that was somewhat an anxious time, but, seeing your pictures of the stoma, the bag, you in recovery during your hospital stay, just everything was a great help. Thanks for putting your story out there for people like us who are searching for others going thru the same thing. My son has had UC for 2 years now and unfortunately was not responding to any treatmenst, and he has been on everything with Remicade for a year being the last medication he had tried. He had become not only steroid dependent, but was becoming steroid resistant, so, we had to finally come to a decision that he was not going to get better without surgery. It was a hard decision to make because he is so young…however, since his surgery, he has been in some pain, but the day after surgery he said to me “I have been in worse pain at home suffering with U/C”!! Again, thanks for sharing your story…it really has been a great help. I wish you a lifetime of great health, and blessings to you and Megan in all you do!!!!


  53. avatar

    Megan says:

    January 16th, 2009 at 9:41 am

    Hi Sue, Wow – 12 is so young to have the wisdom of “I have been in worse pain at home suffering with U/C” – your family has been through so much, I can only imagine. You’ll have to keep us posted on his recovery and let us know when he is back on his feet being a healthy teenager! Megan


  54. avatar

    Sara says:

    February 12th, 2009 at 10:13 pm

    This is a great journal! I love it! I have Crohn’s, and have so far been saddled with a PICC and JP drain about four/five years ago, and have been in remission since. But living with this? It always does me good to see people open and talking or typing about it.


  55. avatar

    skye says:

    February 15th, 2009 at 1:53 am

    thank you so much for sharing this information, I am a 20 year old crohns sufferer and live in fear of the ostomy potential in my life.


  56. avatar

    Steve says:

    February 18th, 2009 at 10:23 pm

    You lucky person! When I had it done I was sliced down my belly from top to bottom. They have improved things now.
    I am glad you showed these pictures. Mine was done about 7 years ago. I do not even think much about it. One tip – we put in a toilet with a built in bidet – adjustable. Makes your life easier. Should have gotten that immediately.
    For those worried about the bag – don’t be. My young kids thought it was cool. If you have lived with UC long enough you realize that you don’t have to be embarassed or apologize to anybody. It takes a few years to learn that though, but makes you a better person.


  57. avatar

    Desiree says:

    May 15th, 2009 at 7:43 am

    Thank you so much for sharing everything you went through. My husband had a colectomy earlier this week and it was fabulous to read this both before and after his surgery to give both of us a better idea of what to expect.


  58. avatar

    Arnold says:

    June 14th, 2009 at 3:52 pm

    Hi, i’m from the netherlands and looking on the Internet arround with Googeling at night, know one thing next week my life gona chanche i’ll become an stoma

    your pictures were helpfull



  59. avatar

    Martina says:

    July 23rd, 2009 at 2:24 pm


    I have quite strange request. I am working with one company who are producing stoma care products (I can not mention the name quite yet as you might say not agree to what I want to ask you). So the request:
    I would like to use (with your permission only) your healthy looking (relatively too what we have) stoma picture for one application guide poster. There will be 50 copies produced only and it will be used in one children’s hospital. Would you agree to donate your stoma picture for this purpose?



    Mark Reply:

    Hi Martina,
    Thank you for asking for permission.
    Please contact me personally by email at to discuss.



  60. avatar

    Jennifer says:

    July 29th, 2009 at 4:21 pm

    What a blessing that you have shared this story. I had this surgery on June 19, after a 17 year battle with UC. My sugery story is very similar to yours. I was realeased from the hospital on day four, pot-op. I went home with a catheter because, unfortunately, my bladder was slow to “wake up”. I had the catheter for a week after I got home, but it’s all a distant memory now. I had my surgery in an emergent situation, so I didn’t have much time to think about it pre-op. Fortunately, I was never on long-term steroids, so my body was able to recover quite quickly. I have had few complications until this week. My stoma is on my right side, and I am having some left side pain and swelling. I will see my doctor tomorrow to find out what is going on.

    Again, thanks for sharing your story. I believe that God teaches us through all situations, and it is a blessing to others to read about your story and know that they can do this…..I agree about the humor….I have found that I would much rather laugh than cry! I hope all continues to go well.



    Jodie Reply:

    Hi Jennifer,

    I am interested to hear what you found out about the pain on your left side. Hope all is ok. I had felt same thing but my reg Dr dismissed it saying there was nothing in there to cause pain since the colon was removed. Told me it was just pulled muscle but mine still hurts. I agree with what you said about how we learn and laughter rather than tears. Thanks for sharing.


  61. avatar

    anita (uk) says:

    August 5th, 2009 at 8:09 am

    thank you for doing this. my nephew has just had emergency surgery that ended up in him having his colon removed after it had ruptured due to undiagnosed ucerative colitis. we are all very worried as he has peritonitis and septasemia.


  62. avatar

    Nichole says:

    August 11th, 2009 at 8:35 pm


    I have Crohn’s disease and was actually just searching the internet trying to figure out how to spell a word (I’m a horrible speller!!!) and came across your site. I had a colectomy last summer and just recently had to have a proctectomy. I am happy to see your son smiling- I am 28 years old and even though I’ve tried my best to make light of the whole situation I do get depressed time to time. I wish your son a speedy recovery and hope he is still doing well!

    God Bless and Best Wishes,


  63. avatar

    Lakisha says:

    August 20th, 2009 at 3:20 pm

    Thank you so much for telling your story. i am in nursing school and i have never seen a ostomy bag before. Thank you agian you are very brave to show the world what you have be throught


  64. avatar

    Jodie says:

    August 22nd, 2009 at 1:23 pm

    Hello Mark,

    You are a remarkable person with a wonderful support group in your life. Your website was done very well. Thank you for all that you shared!!!


    I am a 40yr old female in general good health that was diagnosed with Ulceratie Colitis several years ago but of course had symptoms years before that. My situation was different because I had chronic constipation.

    I found your story online just before I choose to have my surgery and shared it with friends and family. It was so helpful for me and I have gone through my journey like an open book. My family, friends and co-workers have been facinated with the whole process as was I.

    My colon removal was done on June 17 09′ and take down of iliostomy Aug 17 09′. Amazing results so far with no accidents, good frequency and consistency of bowel movement.

    I was wondering if you had some more info on discomfort after takedown. Or if you had heard of anything? It seems like the abdominal muscles are a little more sore than they should be. When I go from laying down to sitting takes my breath away. Like the guts slop or move slowly inside. No abnomal swelling or signs of infection. I was wondering if maybe the small intestine just needs more time to adjust to holding the waste? I don’t eat much and stay away from gas causing foods for the most part.

    Not a big deal though..I was just basically wanting to contact you to let you know how very much I appreciated your story because it helped me just as much as it has helped so many others! If my story can help others as well…I sure would love to share it. If you want…you can put my link up on your site?

    My story is on



    Mark Reply:

    Hi Jodie, Thanks for touching base and sharing your site with us. I’m glad to hear you are doing well. I had some mild discomfort after takedown but more just the surgery recovery. Everyone heals so differnetly and I do know that some people have discomfort after takedown. You may want to post over at on the forum board and see if anyone there is dealing with pain. I did notice for many months after takedown that I could feel the waste in the pouch and it would put pressure on my anus, and the longer I would try to hold it (because holding it helps it get used to its new job), the more it would cause discomfort. So, I worked up to holding it for longer periods of time. Hang in there, you are still early in recovery and have much time to heal and feel great.


  65. avatar

    ioana says:

    September 2nd, 2009 at 6:45 am

    hi I am happy for you cuz’ you are feeling great now . My grandfather has pouch like you and I want to know more about this, we found about his colon cancer last year and now he will take the surgery tomorrow and I am very scarred .. I love him so much so.. from where I can read more about this ?? please help me
    thank you take care p.s : sorry for my english :)


  66. avatar

    Jeanie Bollenbacher says:

    September 13th, 2009 at 5:24 pm

    My husband is 42 and after many many years he is finally considering a colectomy. (Crohn’s). He is very active with golfing, skiing, etc and if fearful this surgery will slow him down and affect his lifestyle. He is also concerned he may have diahrrea all day for the rest of his life. Two things 1) If you had to do it all over agin, would you? 2) What advice can you give him? Thanks Much Jeanie



    Mark Reply:

    Hi Jeanie, It is a big decision to have surgery, especially if he has Crohn’s. The goal is for him to get back to a healthier quality of life and surgery should give him that QOL back he much deserves. To answer your question (1) Yes, I would do it over again in a heartbeat. My only regret is that I didn’t have the surgery sooner. I feel great now and live a happy healthy life doing things like golfing, snowboarding, etc.. (2) Advice would be for you to definitely visit Chaz & Lori’s site: Chaz just had surgeries and he had CD. You will find his journey documented and he is doing great. Also, you will want to read and contact Lizz. She has a jpouch with CD, adn she has had some struggles but good overall – here is a link to her posts and you can contact her if needed. Lastly, there is a great forum over at that you should visit and you’ll find great help there too.

    Please feel free to contact us with anything.


  67. avatar

    Beatriz says:

    November 2nd, 2009 at 10:35 pm

    Hi Mark !!! Your story is amazing as I shed a few tears while reading it. I had UC for over 5 yrs and on sept 7 i had my first part of the surgery. I too know exactly what u have gone through and felt inside n out. You know I have never met anyone in person that had UC but I have communicated with others via email. It’s a whole world out their that people are going or have gone Through what we have.! Right now, my dr is saying that there is a possiblity that I have crohns and not Uc..!! Great!! I know it sucks n it deeply saddens me. They found cancer like cells around the rectum n need to remove it completely … Now js debating if I should go with the second part or stay with the stoma…all I wished for the past few years is to be healthy n gain some wieght. Now I feel great physically n well emotionally it’s a lil difficult some days. However, everyday I wake up like it’s a new day and ready for the best to come. I wanted to thank you for putting ur journey through Internet and for others to be educated. I wish you guys the best!!!!

    Beatriz M



    Mark Reply:

    Hi Beatriz, Do you know what has made your Dr. say you have CD and not UC? Unfortunately, that seems to happen to most people around surgery time, they take a blood test that shows possible CD markers? Is that your situation, if so, let me know and we’ll send you some info on that. They thought I too had CD and not UC but turns out just UC. Now, there are people who do have CD instead of UC and living well with their jpouch like Lizz — here is a link to her posts She is incredibly strong and been through A LOT, but if you do have CD she will be a great contact for you. And we do know others who are now living well with a perm ileo or jpouch with CD. So although it is not the ideal diagnosis to have, there are happy endings. Stay in touch and we’ll try to connect you to the right people in your shoes.


  68. avatar

    Beatriz M says:

    November 11th, 2009 at 8:29 am

    Hi Mark- So Friday my doc called me to tell me my results on premithus test. He said it was more on the UC side!….I am so happy about tha cuz I no longer have the illnes in my body. Regarding your question why they thought CD bc when the tested the colon it showed something it could be possible CD not UC. All i know in the next couple of weeks i will meet with my dr about the next surgery. Yaay! Have a great day Mark and keep reachin others!!!!…..



    Mark Reply:

    That is great news Beatriz. Yes, the pesky Prometheus test – Just so you know that test is controversial for many reasons and most of us have dealth with the same diagnosis fear you just had. It is really important to understand that test and educate others about it, so here is Lizz’s explanation about CD vs. UC and here is my story with the Prometheus test.

    Keep us posted on your surgery status.


  69. avatar

    jessica says:

    November 11th, 2009 at 9:18 am

    I am a nursing student and just saw this surgery in person. I am doing alittle research on the subject and came upon your website. Thank you for bringing your story to attention as it was an amazing read and very informative. Your outlook and attitude is both inspiring and refreshing.
    Sincerely, Jessica


  70. avatar

    Scott says:

    November 13th, 2009 at 9:48 am

    hows everyone doin!


  71. avatar

    Karen says:

    November 20th, 2009 at 3:20 pm

    I am a 29 yr old (former) UC patient home 8 days after my Step 1 procedure, with no complications except a sore back. Reading Mark’s journal before my procedure was priceless. My procedure went almost exactly as his did. I went to Dr. James Becker at Boston Medical Center who has performed more colectomies than anyone in the world (over 900) – in case anyone is looking for a surgeon. I had laparoscopic surgery with 4 incisions; the catheter came out on on Day 4 (I also had drainage issues and got a UTI), the drainage came out on Day 5 and I went home about 3 hrs later. On Day 7 I went into a store with my mother, although I got tired very, very quickly and the bumpy Boston roads were not easy to drive over with my stiching. Feel free to email with questions/anxieties.


  72. avatar

    michael says:

    December 16th, 2009 at 5:24 am

    hi i would like to say thank you for your website. it is very informatve and helpful. i am from the uk and just wish i’d found your website before my ileotomy surgory. as it would have put my mind at ease as what i would go through. i am 25 had my surgory for Ulcerative Colitis on july 31st tis year and have never looked back as my quality of life has improve significantly. i must say after my surgory i was in alot of pain the first day., but after that i was on my feet and mobile. it took me 8 days to get discharged. and your advice of getting to know your stoma is probably the best i can recomend as it is a little shock to the system so anyway to soften the blow helps, i would also say try changing your bag as soon as you have the oppertunity as practice akes perfect lol. i am a bit apprehensive about getting the j pouch as i have heard you can suffer alot of complcations with it. and in the UK alot of people revert back to the ileostomy. anyway thanks for sharing your experience you are truly inspiring!


  73. avatar

    lfinn says:

    January 3rd, 2010 at 6:58 pm


    This is so interesting. My son is 19 years old and is at the stage of needing surgery. He is extremely active, so he needs to learn which surgery for UC will be the best option for him. He would love the J-Pouch; however, it seems as if the need to use the restroom is still quite often. We are going to visit with a surgeon this week to learn more about the J-Pouch Surgery. Also, he has learned (from friends) about the K-Pouch Surgery. It seems to be another fairly good options. Any suggestions?

    Also, I read that you drank protein drinks. My son has a very limited diet. He eats bread, pasta, and drinks Vitamin Water and Gatorade. He cannot tolorate eating much of anything. I would like to see him drink some of his nutrition if he cannot eat it. Do you have suggestions in this area?

    Thanks so much for your inspiration and help to other with UC!!!



    Mark Reply:

    Hi Lfinn, Sorry to hear your son is dealing with this, but he is lucky to have such an active support system. I have always been active too and I too tried many diets to help the UC. When I finally realized that my UC couldn’t be helped, slowed, put into remission with food I was free to eat and drink as I wanted until the surgery. It was really hard for me early on to imagine that i couldn’t control some of it with food, but what I finally learned from my surgeon is that some colons with UC hit a point of “burn out” this is where the colon is so damaged from years of irritation that food and medical intervention can not help, hence, when doctors talk to patients about surgery. And there are many details to consider like Gatorade is high high sugar and sugar often cause liquid BM’s so you may want to get electrolyte drinks sans sugar (found at health/vitamin stores). Before I went into to my surgeon my surgeon wanted me on high protein b/c protein helps our tissue regenerate after surgery. It was intended to help speed my recovery. Now, for me protein works not as a bulking agent but keeps me really thin, so if he adds protein you want to make sure he is getting carbs especially if he is thin naturally.

    As for jpouch versus other options, this is the MILLION dollar that every body questions pending surgery. Many people feel like the jpouch is the gold standard, if you get a healthy jpouch you can use your anus normally. Yes, you will have more BM’s, but I have 8-10 BM’s a day and I have ZERO complaints b/c (1) I am healthy and feel good, (2) I have full bowel control and no urgency, and (3) my BMs are on a schedule so they don’t intefer with my active life at all. For me the jpouch was the best decision (and gamble b/c of course all those complications you hear about could happen). I haven’t had any complications that are worth regretting my jpouch. A k-pouch is a good option and I know many colon cancer people go that route b/c they can’t have the jpouch like UC’ers due to they need more rectum removed from cancer and can not connect the jpouch. Where UC we are lucky that our rectum isn’t damaged and can remain for the jpouch. We are lucky to have the jpouch option more than others who aren’t eligible. I’ll post some links for you to review to help you fill in your knowledge to make the right decision with your son.



    Mark Reply:

    Here are links to two EXCELLENT webcasts on UC and surgery decision. The more info you have, the more informed and secure ya’ll will feel with the decision you make. Empowerment is key in having a healthy surgery and recovery.

    Making the UC surgery decision (interview with a surgeon)

    UC Meds versus Surgery

    On there are support forums for everything jpouch or kpouch related.




    Mark Reply:

    You may also want to get in touch with Grant – he is 19 years old and inbetween surgeries so he can go to college this spring semester then have his jpouch hooked up this summer

  74. avatar

    Scottie says:

    February 21st, 2010 at 2:56 pm

    Hi Mark and Megan. Thank you for sharing your story and photos with everyone. I am 44 years old and have had UC for about 20 years and have had it chronic for the last 4 years. I have been on most of the meds except remicaide and humeria. I refused to try those 2 because of the side effects they may cause. I recently had a bad flare that sent me over the edge. I am so tired of living with this disease and met with a colorectal surgeon 2-18-10 and am scheduled to have the 1st surgery 3-25-10. I’m not going to lie and say I’m not scared but after reading your story it has been very inspirational and has calmed some of my fears. I have missed out on so much the last 4 years and feel like my wife and 2 kids have been short changed because of this disease. Thanks again for for story and photos and congrats on your first little one !




    Megan Reply:

    Hi Scottie, It was scary for Mark and us as well. It seems like a really daunting and drastic surgery. Turns out once he was in it and all was said and done, it wasn’t that huge of a deal. Listen, you and your doctors will know when surgery is the best for you, but we can assure that in Mark’s case he did get his life back and he lives a wonderfully healthy happy life now, a life that was impossible with UC. Also, think for yourself and family that each year after 15 years will UC substantively increases your risk of colon cancer. I know for us that was the icing on the cake – no colon meant no fear of colon cancer.


  75. avatar

    Ana Garcia says:

    February 25th, 2010 at 2:13 pm

    Hello Megan and Mark, We live in Mexico and we want to congratulate you guys for sharing your history with all of us. We have been reading a lot of information in the internet. All that you wrote is very helpful for the people that has UC, not just the American people, also for all the people that lives on other countries. Your history is very helpful because all of the pictures you shared, there are not too many like yours. My husband is having his first surgery on Monday March 1st, 2010, and I´m a little bit nervous about it. But we are so excite about it, he doesn´t want to live like he is right now anymore. He is just 27 years old, and like he says, he has a very long life to live without UC. God help us. Thanks for all yo have done for people like us. Ana



    Mark Reply:

    Hey Ana, We are so glad to hear that the site has helped your family. One thing we know about UC is that is a disease that discriminates by age, ethnicity, etc…..Unfortunately, it spreads itself to all people! Please let us know how his surgeries go. Will he be having 2 or 3 steps? Will it be open or lapro surgery?


  76. avatar

    meghan says:

    February 26th, 2010 at 12:43 am

    Dear Megan and Mark

    I just wanted to thank you for sharing this intimate story with everyone. I am a nursing student in WA and I was trying to get more information on colostomies and how to care for patients with them and it was so helpful to hear about it directly from a patient point of view. And then to see all the people who have written to you that this has helped them too. Amazing. I hope all is going well with you both and thankyou again. This is the kind of information all nurses should have so they can give the best care to their patients.


  77. avatar

    extenze says:

    July 30th, 2010 at 1:43 pm

    This is a excellent subject to talk about. Thank you for making this page. I’m convinced there are a lot searching for this kind of conversation.


  78. avatar

    JasonH says:

    October 5th, 2010 at 11:10 pm

    Mark, my name is Jason. Your story had realy helped me a lot. I would realy like to ask you some questions about what you went through if possible. Thanks, JasonH


  79. avatar

    lizzy says:

    October 27th, 2010 at 8:07 am

    Hi just had a look at what you have been through, I have been through the same my last operation the take down was 4 years ago now, it is the hardest thing i have ever had to go through but can honestly say it was worth all the pain even though at the time i was unsure!! although you are not left as new its just a different normal for you. Good luck x oh your scars are very neat!! mine are not so but im glad i have them as it saved my life.


  80. avatar

    British blog says:

    December 4th, 2010 at 5:40 pm

    Awesome to enjoy finally checked out your posting. I replied to your previous piece although I didn’t get a resolution.Is this design the standard web template or maybe you’ve hand crafted your internet site Many thanks.


  81. avatar

    Extenze says:

    February 2nd, 2011 at 10:27 pm

    Mark is lucky to have a medical team that has worked their own special kind of magic for him – and he’s lucky to have the support of his mom and, obviously, scads of friends. I wish you both well and, because having viewed and read this, I am encouraged that our journey will not be as dreadful as my husband is thinking it’s going to be.AGAIN – THANK YOU.


  82. avatar

    Susan C says:

    May 22nd, 2011 at 7:55 pm

    Hi, Mark! Thank you for sharing your experience. I have been an UC sufferer for 15 years and I am finally scheduled for having J-pouch next month. My first surgery is scheduled on June 15th and I am very nervous. I had met my surgeon and I asked him about the pain meds after the surgery. He told me he would not give me any narc such as morphine or vicodin. I am not sure if he was serious or joking because it will be freaking painful if I get no pain meds right after the surgery! Did your doctor give you any pain meds after you came out of anesthesia? I am really really nervous…


  83. avatar

    cathyG says:

    August 7th, 2011 at 6:12 am

    My mom of 77 years old just had a permanent colostomy done on July 14th. She did not have enough colon to bring it down low on her tummy or enough for it to stick out. I call it an innie stoma it actually is concave on her tummy. Also is located on the left side looking down at her tummy and not to far under her left breast. Came home on the 22nd and started her recovery with home health care nurses coming in the home and me there to help. On the 28th the bag leaked and then leaked a total of 5 times in a 48 hour period of time. This was with the home health care nurses coming and dealing with all of ths. AS you can imagine her skin became compromised and ended up in the ER. She is now in transitional care since Aug. 1st. First 2 days the bag kept leaking and being changed. Now we went 3 days and almost bade it to a normal pouch change day….but NO. Does any one out there have a similar difficult stoma and have tips or type of pouch you are using. She has lost all of her confidence in the bag and as you can imagine she would be totally house bound if came home as she would be afraid to go out in the world. She was a very active 77 year old women and it breaks my heart to see her life taken from her after going thru all of this. I am conficident that someone has help out there in the blogging world. Thanks



    John Walsh Reply:


    John Walsh says:

    August 7th, 2011 at 10:34 am

    Try convatec mouldable convex 2 piece pouches with a bit of stoma paste under the backplate

    If the skin is red and sore use some Convatec Orahesive powder first then dust off before you put the cavalon and stoma paste on

    email me if you want more info



  84. avatar

    John Walsh says:

    August 7th, 2011 at 10:34 am

    Try convatec mouldable convex 2 piece pouches with a bit of stoma paste under the backplate

    If the skin is red and sore use some Convatec Orahesive powder first then dust off before you put the cavalon and stoma paste on

    email me if you want more info



  85. avatar

    Bruce Logoleo says:

    September 11th, 2011 at 8:40 am

    Gday Bruce Logoleo here. I love whatever you people tend to be up to at This kind of clever work and exposure! I wish I can do something similar. Carry on with the good job folks. I’ve added you guys to my own blogroll.


  86. avatar

    julie says:

    November 3rd, 2013 at 5:28 pm


    I was diagnosed with UC when I was 24 and had the total proctocolectomy surgery when I was 26 in 1992 by Dr Donald peck. I had only one surgery done and no bag or stoma and they removed my entire colon and rectum. I am fully fine for all these years now with 2 boys . I suffered with the flareups only for a year and went for the surgery and I am glad I did and I am glad they were able to do it in one surgery with no bag.


  87. avatar

    500 fast cash says:

    March 7th, 2015 at 8:02 pm

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  88. avatar

    prix des pneus says:

    June 4th, 2016 at 1:19 am

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  89. avatar

    Pic 14: Cleanse bag and dressed, Day eight – Luis Salom says:

    June 16th, 2016 at 10:10 am

    […] surgery documentation now located at: http://www.jpouch.internet/photographs/surgery-1/ Expending some time recovering, he is clear out of the shower and undertaking nicely on Day eight. […]

  90. avatar

    World Club Dome » Pic 14: Thoroughly Clean Bag And Dressed, Working Day Eight says:

    July 2nd, 2016 at 2:35 pm

    […] operation documentation now situated at: Paying out some time recovering, he is clean up out of the shower and undertaking very well on […]

  91. avatar

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