Photos 3: Jpouch

J-pouch “Takedown” Surgery or Mark’s Step 2 surgery

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)

*Time between surgery 1 “total colectomy”and surgery  J-pouch “Takedown” Surgery 2 “takedown” was 3 months.  Mark could have had the surgery done at 8 weeks but needed an extra 4 weeks to fit his work schedule.

**I tell my story 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.

Photo 1: X-ray prep and night before takedown

Five days before the scheduled takedownsurgery, he went to have a barium x-ray done of his pouch to make sure there were no leakages.   This process was easy, but make sure you STRESS to the x-ray technicians that you have NO COLON and that they must use smaller tubes than they would withothers.  Please be very clear about this, that they can not use standard tubes, it isn’t as common for them to do this procedure on people with no colon, so don’t assume they understand.   You may have some barium fluid coming out your stoma, and you might be prepared for some barium fluid leakage from your anus on the car ride home.

This is Mark in the hotel the night before the ‘takedown’ surgery. Yesterday Mark started another stoma blockage, this was a full blockage that last 24 hours (Sat into Sunday).  After having 3 blockages, he began to think it was maybe scar tissue and not just food like we had initially thought.  This blockage left him vomitting and in pain, but luckily he was still able to have the takedown surgery on Monday morning.

Photo 2: Prep for takedown & Supplies Brought

It was really nice that everything was familiar for this surgery. Meaning the rooms were the same, and we dealt overall with the same people.  It made it much easier going into this surgery knowing the procedure basically.

What to bring for your takedown:
1.  Super soft toilet paper.  For a 4 day stay Mark used 1.5 roles.

2.  A variety of your preferred creams for skin and/or hemorrhoid (skin tags) treatment.  Mark’s favorite cream is Cortizone, Nupercanal and Tucks cream.  Other people have mentioned they prefer A & D, Calmoseptine.    Just find what creams works best for you.

3.  Mark had a spray bottle but didn’t use it b/c his movements went from liquid on day 2 to mashed potato like once he began eating solid foods.

4.  Other people have mentioned bringing their preferred garments for leakage.  Mark didn’t have any leakage, but you might want to bring some.

There are many great posts about what to bring or how to prepare for takedown on jpouch.org, here are some good links:  takedown supplies and happy takedown prep .

Photo 3:  Goodbye Stoma

Here we said goodbye to the stoma. He was a good stoma, that did his job really well and was good to Mark.  If for some reason Mark would need to go back to temp or end ileostomy we know now that it would be okay.

We saw having this temp stoma inbetween surgeries as a blessing. If this is ‘worst case scenario’ if the jpouch doesn’t work, then we don’t have anything worry about.  Life with stoma is a MILLION times better than life with UC.

Photo 4: Takedown day 2, Bandage

Here you can see he is standing in the morning of day 2.  He just had the foley cathedar removed (only had the cathedar for 15 hours).  He was able to urinate on his own fairly quickly and since this procedure isn’t consider to have trauma near the bladder like the first step, he didn’t need to keep the catheder in long. They put it in for surgery and then the night of surgery to make sure he was urinating enough.

Most exciting, was that 15 hours after surgery, he felt some pressure on his anus and he had his first bowel movement.   We listened to the others on the jpouch site and brought him soft soft toliet paper, wipes, and spray bottle, and multiple types of butt care creams (Calmoseptine, A & D).

Since his first BM, he has gone 3 times in 8 hours. He has continence control.

Just this morning was he allowed to start sipping water, no food yet.  The doctors want to make sure his bowels are fully awake before they start putting food into him.  He is very hungry right now, and he just saw a commercial for pizza and he said, “yumm, pizza”….He is feeling pretty darn good.

Yes, he is swollen in both the pictures here on Day 2 his “surgery” alergy came back. He had some reaction apparently during the 1st in the operating room.  Then on the 2nd surgery we thought we knew what he was allergic to, but obviously not.  He was all swollen and itchy, and his hand that had the IV was really swollen.  He was on benedryl which helped him sleep in the hospital.

Photo 5: Takedownday 2, bath

Just to give you a frame of reference here he is about 24 hours after surgery, and he is up and has the engeryto take a sink bath.  I’m sure you are sensing that the physical recovery of this surgery is a lot less than step 1.

Photo 6: Takedown day 2, Walking

Walk, walk, walk and get those fluids moving.

Photo 7: Up-Close staple suture Day 3

Here is the stoma suture on day 3.  His stoma site was stapled closed with three staples.  The closure of the stoma site is about an inch and half long.

He doesn’t appear to have any infection in the area.  The surgeon said that nearly 50% of the stapled sutures need to be opened up because of infection.  The infection is common since this was an area exposed to stool.  They said they do their best to clean the area in surgery but that waste is sometimes left behind.

The surgeon took off the bandage this morning, and it was totally clean, there was no oozing or anything.  The surgeon did not cover the wound back with gauze, so now Mark has no bandage.

In this photo you can see all 5 incisions from the lapro surgery from step 1 (done 3 months prior to ‘takedown’ surgery)

1.  The north incision is doing well a little red but no pain.

2.  The middle incision right in/above his belly button is almost gone.

3.  The east incision (east in photo) where the JP drain was during step 1 surgery recovery is a divit but healing well.

4.  The south incision looks good, it is smooth to the touch, but still has some purple/redness.  No real pain, but his underwear band does irritate it at time.

5.  The west site where the stoma was that is now sutured with staples.  This was the only site on his belly that the doctors worked on during the ‘takedown’ procedure.

*STAPLES REMOVED ON DAY 4 WHEN RELEASED FROM HOSPITAL.  Staple removal did NOT hurt, and was done right there in his room totally casual and easy.

Photo 8: Staple Suture

Just a far away shot for you to see how it looks.  On day 3 he is sitting up and feeling good.

Photo 9:  Day 3 first time with clear fluids

Day 3 and he is having his first all clear fluid meal.  Surgeons are being very cautious about giving him food.  His bowels woke up on day 2, and he is having BM’s every few hours.  No pain, no butt burn, but he hasn’t eaten anything yet either so we will update as his movements change.

On the night 3 into day 4, he was on clear liquids and he went to the bathroom 3 times during the night.  His hinny skin is starting to feel a bit raw so he is tapping into the calmoseptine.  He will start soft foods today, so we’ll see if ‘butt burn’ occurs or not.   Cross fingers for no butt burn :)

Photo 10:  Day 4 Staples removed and glued shut

On Day 4 before leaving the hospital the staples were removed by the resident surgeon.  All he has now is the strips of tape covering the wound that are glued on the top and the bottom.  Mark will have this stuck on there for a few weeks (2.5 weeks).  He can shower and everything, no baths though that come over the old stoma site.  He can take baths to soothe his behind but not the wound.

Update on this:  Those strips of tape the resident surgeon put on only last 1 day and then they were coming off, so Mark made his own tape coverage for a few days, then he just went bare after about 3 days.

Photo 11: Going Home Day 4

On Day 3 he started solid foods.  And so far, so good.  When he was eating full liquids he was having fairly thick movements.   On day 3 he had 6 BM’s, and 2 night BM’s.  He wants me to mention that he thinks he would have had less than 6 BM’s had he been able to fully empty his bowels, but the nurses wanted him to save his urine (to prove he wasn’t dehydrated so he could be released), and having to save the urine broke up the ability to fully empty his bowels at one shot.

Today, on Day 4 (released from hospital).  He is now on a full day of solids, and his movements are not so liquidy, and farther apart in time.  Movements every 3 hours or so, and he has no urgency and can hold them till he reaches the bathroom.

No night leaking, and moderate pain from hemorrhoid tissue..

He is thrilled to be out of the hospital and will keep ya’ll posted about movement frequency.

Day 5 Update:  After being on solid foods 2 days, he had night frequency about 6-8 times.  Butt burn of some sort is starting, and there is some pain around the suture site (not on any pain meds now).   He is going to start playing around with his metamucial amount.

Photo 12:  Day 7 up-close, Fiber & Imodium

Day 7, and he is having about 6 movements during the day.  He has ranged from 2 to 4 movements the last few nights.  Various issues are not relating to butt burn that we’d heard so much about, but trouble with existing hemorrhoid skin tags.  The tags are swelling and causing severe discomfort that no over the counter cream is helping.

There is still much to learn about his new ‘plumbing’ but it is gong as expected. The emotional transition is a lot considering the 3 months with the temporary ileostomy allowed great freedom for living away from UC.

Mark is using a fiber supplement in the morning to help thicken up his movements.  He was given fiber in the hospital right when he started eating solid foods.  Also, around week 2 he started trying imodium to see if that would help slow the night movements.    Here was a great post where Jan explains in the 3-4th post down How imodium works explained – understanding how the medicine works helps Mark use it better. He also uses the generic brand from Costco it is so much cheaper than imodium and comes in a bottle so you don’t have to open up those wasteful individual packages 4 times a day.

Mark is also slowly trying to hold his movements and not rush to bathroom every time he feels some pressure.  It was mentioned to Mark to try to slowly hold going to bathroom to help, but to only do this in little bits as the pouch adjusts.

Photo 13: No Suture Day 7 Full shot- Grumpy Moods

Mark is tired and a little grumpy.  He isn’t sleeping at night due to BM frequency, and it seems the emotional of reverting backward to some familiar UC ways is challenging.

We were prepared for this as much as coud be but the emotional aspect of seeing symptoms like UC, is hard.  It has made Mark quiet (an old habit), and it has made me (Megan) irritable and I feel like screaming at times. I know this disease is about Mark and his recovery, but it does take it toll on immediate loved ones who provide the emotional support.    I just want to preach to anyone who is dealing withdisease like this that the sick person must always treat their loved ones with respect, you can be grumpy, scared, quiet, remove affection, etc…but you must do it in a way that doesn’t punish your carers or make it harder on us than it already is, and please know we aren’t sick like you are but we do ache inside because we love someone who we watch struggle to be healthy.  Okay, I’m done preaching now.

Nevertheless, recovery takes time, time, and time.  And we were prepared that this recovery would take time and have many ups and downs.  But it is one thing to be prepared and then it is another to experience it.

Photo 14_stoma site healing Week 3

Here is the stoma site healing up after 3 weeks since take down.  Isn’t that strange how the stoma ghost is still around the suture.  Anywho, the wound is healing well, no infection and just itches at times.

Photo 15_3 weeks past_stacking wood


Hello Winter!  We had two cords of wood sitting there waiting to be stacked that arrived prior to takedown and it sat there through surgery.  The good news is that 3 weeks after takedown Mark felt great and was stacking wood. He is going back to work on week 4 (surgeon approved him to do his type of  work after 4 weeks).   However, he has been doing office type work since early week 2.

At the end of Week 4 after takedown, all is going really well. Mark went back to physical work this week on an interior remodel.  He was able to work full days and felt good.  He was surely tired at the end of the day and is resting this weekend.  His moods are much improved now since we are getting back to living a “normal” life.  His movements are about 2 at night and 4-6 during the day.  He is on 2 immodium in morning and glass of metamucil, 2 immodium at night before dinner and glass of metamucil.  He thinks the fiber is helping thicken him enough so he can fully evacuate.  And the immodium he thinks is helping his frequency decrease.

No complaints, 5 weeks in jpouch life and is going well!

Photo 16_And Life Goes On.


Okay, so here is Mark after 10 Weeks Post Takedown.  As you can see he is coming to life.  It has been years since he snowboarded as his UC did not allow board sports easily (ski lift, bathroom, urgency…not a good mix).

He is actually volunteering to help a program that takes kids snowboarding who use modified board equipment due to movement paralysis of some sorts.  He is really excited about this and he can’t wait to snowboard again.

Photo 17_ Healing 10 wks post takedown

Here are the scars after 10 wks past takedown, and for the other 4 scars it is now 5 months!  And his scars are looking really good.

He is still taking 2 immodium in morning and cup of metamucil.  And he takes that same “cocktail” in the evening before dinner.  A few weeks ago he didn’t take the immodium or metamucial, and he was in the bathroom a lot more.  Made him realize that those are necessary for him to regulate his movements.  He is averaging about 6 times in a 24 hour period. Some days are more/less than others.  He does have some butt burn, but comes and goes, I’m sure it has to do with his food. We eat tons of tomato based sauce/foods and maybe those are the issue but he still eats them!

Update May 2008

No photos to show right now, but all is going well. About 4-8 BMs per day. 1-2 per night. He sleeps deeper than he ever has, he feels good, doesn’t stress about going out. It is like a whole new life.  We will post some new scar updates in a couple months.

You can click here to follow the most recent posts of “Living with a J pouch”  Life most definately improved after j pouch surgery and recovery :)  http://ucstory.wordpress.com/2008/06/02/veracruz-mexico-photos/

9 Month Jpouch Update: Doing great, here is a link to some updated info and some 9 months after takedown photos:  http://ucstory.wordpress.com/2008/08/08/mark-9-month-jpouch-update/

15 Month Jpouch update:  Still doing great, here is a linke to 15 months living with jpouch and photos http://www.jpouch.net/2009/01/04/mark-15-month-jpouch-update/

 

© 2008 All Rights Reserved

98 Responses to “Photos 3: Jpouch”

  1. avatar

    Laurie Bradley says:

    May 17th, 2008 at 8:39 pm

    I want to acknowledge how difficult it must have been to photo/document this life changing decision. I, like Mark, had 3 terrible years of UC, constant flaring and hospitalizations, losing and gaining weight (sometimes 40 lbs in 3 weeks) before finally my doctors told me to have j-pouch surgery. I was 44 years old and nobody else in my family had this disease. My surgeon didn’t remove my rectum though and my scars are different than his. My incision site goes from my belly button vertically down to my pubic bone. My ostomy site is on the left. I had a terrible time with surgery and take down was relatively sooner than everyone thought because of multiple bowel obstructions necessitating hospitalization – so take down happened in 6 weeks. I was in the hospital 2 months from initial surgery until they finally released me after take down surgery. The next 6 months were very difficult; diapers, butt burn, feeding tube, depression and 3 home health nurses. I cannot eat many of the foods I couldn’t eat when I had my colon and so my diet is limited. I was on steroids for 5 years and 2 years after take down surgery finally got off of the steroids. I hated those drugs. There are times I try certain food, and then pay for it! I was told bathroom visits would be about 9 a day – mine are between 10-13. It is a better life though – before I was trying, like Mark, to stay so healthy and I was always very ill. Looking at the documentary/photo journal brought back so many memories – thanks (I think :)) for the memories. I hope your health continues to improve.

    [Reply]

  2. avatar

    mdhilton says:

    May 17th, 2008 at 9:43 pm

    Great to hear from Laurie! thanks for sharing your story, although not the most happy memories – it is nice to reflect on what it was. This very time last year in reflection I was one month away from step 1 surgery, and we were just headed into the GI’s office to make the final final decision to okay for surgery since the last chance medicine for me (Humira) was not working.

    [Reply]

  3. avatar

    Carter Sturdivant says:

    June 3rd, 2008 at 10:17 pm

    Wow. Thank you Megan and Mark for a great web site. I’ve looked over everything you’ve posted, and it seems as though I am experiencing the same things, almost exactly. I had the first surgery nearly 2 weeks ago – the colectomy – and I’m doing pretty good so far; I’ve recovered extremely well. I am still getting used to the ileostomy but I have to agree with you, wearing this bag sure beats having UC by a long-shot. I have had the opportunity to speak with a few other people who had this surgery and all have said they would do it all over again. I truly appreciate the page you have put together. I have two questions: 1) Would you recommend the ‘bag belt’? 2) I’ve considered putting together a video of my experiences with the surgeries to post on YouTube. Would you mind if I included a link to your web site?

    [Reply]

    avatar

    Debbie Aiello Reply:

    Carter,

    I am having my surgery next month and read your blog. Seems like you had a better experience than many others, very encouraging, are you still doing well? I am so sick of this UC and not having a satisfying life.

    [Reply]

  4. avatar

    mdhilton says:

    June 4th, 2008 at 2:08 am

    Carter,

    Glad to hear you are doing well after step 1, you’ll be pleased to find how much stronger and better you’ll feel in just a few more weeks. Yeah, the ileostomy loses its negative features when you don’t have to feel UC sick any longer. To answer your questions:

    1) The belt helped me because I work construction and so it kept the bag out of the way, but towards the end of my ileo I didn’t even use the bag for work. I think it is a great feature for people who need to keep the bag out of the way, or if you aren’t comfortable with the bag. But for me the bag rode up and never stayed in place, and it was hot as well. If you don’t mind your bag the way it is now, I would say to not bother with the belt if it isn’t getting in the way of your life.

    2) Sure, it would be great to have you connect our site your you tube page. I think is is good for anyone to share their story any way possible. Also, when you get your you tube up, let us know, we are planning on making a “resources” page on our site so that others can find all the great uc/jpouch resources out there.

    [Reply]

  5. avatar

    CindyW says:

    June 5th, 2008 at 1:49 pm

    Thank you for these messages! Mark and Megan, bless you for documenting your experience!! I have battled UC for 13 years, I am a 44 years old female. In the summer of 2007, I lost 40 pounds, became very ill and weak. After a 3 week hospital stay to try and safe my colon, it was decided to remove the colon and set up a temp. ostomy in Oct. 2007. On May 20, 2008, I had the 2nd procedure with the J-pouch made and left rest. It was a harder surgery than I expected, I ended up going back into the hospital due to a blockage. I’m just starting to eat soft foods. It has been a struggle, but I hope in the end, it will be worth it. I will have the take down surgery the end of July, 2008. I am worried about my system functioning again, the incontinency, and the “butt burn” I read about, however, I am hopeful for a speedy recovery. Trusting all goes, well….CW

    [Reply]

    avatar

    Debbie Aiello Reply:

    Cindy how are you doing? Better now hopefully. I am considering the surgery next month, was it all worth it?

    [Reply]

  6. avatar

    mdhilton says:

    June 5th, 2008 at 4:20 pm

    Hi Cindy,

    Sorry to hear about your struggles, the good thing is that you are slowly on the road to recovery (with some bumps it sounds like). Yes, the jpouch surgery can be tough on people and then dealing with any blockages will drain you both physically and emotionally. For me the surgeon said that if I was able to hold the mucous that was draining from anus while having the jpouch healing inside and using the temp ileo, then I would likely not have incontinence. He was right and I haven’t had incontinence. And the butt burn is really manageable, there are great creams, and it is somewhat food related, you’ll figure it out quickly how to AVOID it. For me the butt burn has been mild.

    Just hang in there, it will get better but you must be patient. Also, if you don’t already visit the excellent support group at http://www.jpouch.org you should check it out, you will be suprised to find how many others are in like siutaitons to you. It doesn’t make yours any less important but it is nice to exchange info and get positive hope for the future there – especially from others who’ve been there, done that, and now are happy!

    Also, if you find you are “worrying” a lot, or writing stories about what could be, what may happen, thinking about what you are afraid of. You may need to find some books, or new coping tools. I know Megan really relied on meditation, and books from people like Eckert Tolle Power of Now, and Pema Chodron “When Things Fall Apart” to help her settle the worry in such extreme situations. Take care, Mark

    [Reply]

  7. avatar

    CindyW says:

    June 5th, 2008 at 5:04 pm

    Mark!

    Thank you for your quick reponse, suggestions, encouragment, and information on a support group, I will check it out. You are appreciated!

    Have a good day,
    CW

    [Reply]

  8. avatar

    ericmills says:

    June 5th, 2008 at 6:24 pm

    Hi Mark and Megan,
    I’ve been commenting on the flickr photos because that’s where I initially found you guys. I have a proposal: I’ve been considering writing a book about Colitis from a patient’s view and specifically dealing with the little things, like tricks for getting through the tedious hospital stays. I’m also an avid blogger and web designer, and I was considering setting up a blog to test out some ideas. Since your blog is already so great, I was wondering if you would consider adding me as a user to post some entries. The main reason I ask is because, as we know, Colitis is HIGHLY subjective and no two cases are exactly alike. Perhaps another story and point of view could help reach more people. Instead of setting up a different site, I would like to contribute to your site and help grow the community. Here is a site I started but couldn’t maintain http://ibdmatters.blogspot.com/ with more than one blogger, a site can really take off! Please email me directly at eric at eamills dot com and we can discuss this further. I think it would be great. Thanks, Eric

    [Reply]

  9. avatar

    mdhilton says:

    June 6th, 2008 at 3:58 am

    Hi Eric,
    Thanks for your post. Megan said she sent you an email to discuss this further. Mark

    [Reply]

  10. avatar

    Jamie says:

    June 19th, 2008 at 12:45 am

    Thank you so much for your site…I am not suffering from UC, however I have an ileostomy which stems from bleeding ulcers way back in 1998. It started with the removal of my stomach (3 major surgeries for that), then the diahrreah started. About 50 time per day. One day I woke up and I was severely constipated. That lasted for about 6 months and it was decided to remove my colon. They left the rectem, so now I am getting an opinion for a take down. I am very scared because I seem to have bad luck when it comes to health issues. My surgeon that I’ve had from the beginning will not do a take down because she thinks my belly looks like a cacoon tangled with adhesians. So, off to Mayo we go on July 22. Any advice for me? If they say it can be done safely, how do I make a decision…..
    Very confused and afraid!
    Thanks again, your site gave me some help…..
    Jamie

    [Reply]

  11. avatar

    mdhilton says:

    June 19th, 2008 at 12:59 am

    Hi Jamie,

    Sounds like you’ve had a long road. I had no idea that bleeding ulcers advanced to ileo stages! That is good though that you are seeking another opinion, we sought multiple opinions until we felt that there was enough information to know what was the right decision for me. But as you probably noticed it took me 3 years to make that decision, so you are asking the million dollar question that is asked by almost everyone who has the “option” of jpouch. I think the best advice right now is to tell you to embrace the journey, look at all this is a positive situation no matter which option you choose (if you have a choice that is). Keep you mind open, and don’t have any expectations. This should help somewhat with the decision process. Then next thing is that you’ve been living with ileo this long, you can continue to live with it till you know 100% what is the right decision. And lastly is the big big big biggest thing: START TALKING ABOUT IT WITH FAMILY, FRIENDS, AND SUPPORT RESOURCES. We live by the support system we’ve had at http://www.jpouch.com, where you would fit right in trying to make that decision and getting info. We don’t see bleeding ulcers on their often, but I bet if you put it out there we’d find others with a like story.

    Next we also need to get your language to shift from “very confused and afraid” to “seeking clarity and curious.” Your health will do its thing and you can’t control that, so the only thing you can control are thoughts about how you meet this challenge. If you want we do have some books that I know Megan really clung to to get her through fear and confusion (a big issue for her) and into a clearer state of mind. We’d be happy to start a dialogue with you either here on the site or through private email, or maybe we’ll find you http://www.jpouch.org.

    Holler with anything, Jamie!
    Mark
    (megan too but she’s attempting to cook our dinner and yapping at me about what to say here :)

    [Reply]

  12. avatar

    Jamie says:

    June 19th, 2008 at 2:56 pm

    How AWSOME of you to offer private e-mail chat, if you will! I would love and appreciate it so very much. Please help me start the process…. You are two very awsome people and I give you so much credit and applaud you for your seeking out people who need help. This is so much what I need right now….thank you thank you thank you!!!!!
    Jamie at jlmikk@charter.net

    [Reply]

  13. avatar

    Megan says:

    June 20th, 2008 at 2:20 am

    Hi Jamie,

    We can be reached at mdhilton@gmail.com. Feel free to PM (private message) with anything. We do of course understand that some people prefer PM for privacy reasons, but we also encourage people to share conversations online for others to see – this is how we keep our support community thriving. So, if there is anything you are comfortable with outside of PM, please post it here or you can try something like http://www.jpouch.org. At jpouch.org you’ll get our voice as well as many others. Look forward to helping you start the process either by PM or public.

    Holler,
    Megan

    [Reply]

  14. avatar

    mdhilton says:

    June 20th, 2008 at 8:21 am

    Jamie,

    Here is an excellent video on a woman who had ileo and then making the decision to go to a jpouch. Her situation is different than yours b/c she finds she has not UC but Crohn’s, but it her story and it is good to hear because she is doing so well even with all her challenges:

    http://wrongdiagnosis.healthology.com/hybrid/hybrid-autodetect.aspx?content_id=1841&focus_handle=colitis&brand_name=wrongdiagnosis

    [Reply]

  15. avatar

    Jamie says:

    June 21st, 2008 at 10:40 pm

    Hi Mark & Megan,
    I’m sorry I haven’t gotten back to you, been gone for a couple days, but I do have to check a couple things out before I tell you about some things….I just want to make sure I am understanding it correctly before I explain it to you!!!
    Thanks so much again for your care and concern.
    Jamie

    [Reply]

  16. avatar

    NATALIE ARGUELLO says:

    June 22nd, 2008 at 10:39 am

    MARK AND MEGAN,
    I WENT THROUGH THIS SURGERY THREE YEARS AGO WHEN I WAS 23 YEARS OLD. I AM NOW 26. I WISH I HAD READ THIS ARTICLE BEFORE I HAD THE SURGERY. I WAS REALLY SCARED AND I DIDNT HAVE A DETAILED DOCUMENTARY LIKE THE ONE YOU HAVE POSTED. I WAS DIAGNOSED WITH ULCERATIVE COLITIS WHEN I WAS 19 AND AFTER NOT HAVING A LIFE AND A LOT OF PAIN AND SUFFERING, THE DOCTORS DECIDED TO GO THROUGH WITH THE SURGERY. IT WAS VERY PAINFUL FOR ME BECAUSE THE AREA WHERE I HAD MY BAG, KEPT GETTING VERY RED AND IRRITATED. I ALSO HAD AN OBSTRUCTION TWO WEEKS AFTER MY FIRST SURGERY AND THEY HAD TO RE OPEN MY WOUND TO FIX IT. I HAD A VERTICAL CUT GOING DOWN MY STOMACH AND NOT THE LITTLE OPENINGS LIKE YOUR HUSBAND. SO MY CIT WAS MUCH BIGGER AND GOT INFECTED BECAUSE IT WAS RE-OPENED IN A TWO WEEK PERIOD. FINALLY IT CAME TIME TO HAVE THE BARIUM X-RAY AND YOU ARE CORRECT! THEY DID IT WRONG ON ME THE FIRST TIME. THEY HURT ME SO BAD THAT I DIDNT EVEN WANT TO GO THROUGH THE SECOND SURGERY ANYMORE. I CALLED MY SURGEONS OFICE AND SENT ME TO A DIFFERENT OFFICE TO GET THE BARIUM X-RAY DONE CORRECTLY. I FINALLY WENT TO GET MY BAG REMOVED AND EVERYTHING WAS SUCCESFUL. I NOW GO TO THE BATHROOM MANY TIMES A DAY, BUT IT DOESN’T HURT AND I CAN ACTUALLY HOLD IT FOR MANY MINUTES. THANK YOU FOR SHARING YOUR STORY WITH US!
    NATALIE ARGUELLO
    SAN DIEGO, CA

    [Reply]

  17. avatar

    Megan says:

    June 23rd, 2008 at 4:38 am

    Hi Natalie,

    Sounds like you had a bumpy road getting back to health, and it all happened so young. Yes, there are lots of stoma skin irritation issues and I know some people have lots of issues, sounds like yours was more serious than some irritation. We are so glad to hear you have good control holding with your jpouch, did the lenght of time you can hold yours before having a bm increase over the years? We’ve heard Mark’s pouch will expand as the years go on, especially at around the year Mark.

    Also, thanks for saying hello, we love to hear from others – keep us posted!
    Megan

    [Reply]

  18. avatar

    Jamie says:

    June 29th, 2008 at 2:48 am

    Hi Mark & Megan,
    Sorry it took so long to get back to you, but as I said, I had to research some things….turns out I do not have a J pouch. I did after they removed my stomach, but when it got to the removal of my colon, they totally “redid” the J pouch deal and removed that portion. Now I am attached like this….my small intestine is attached to my esophogas and then comes out to my stoma. Then the rest of my small intestine sort of floats around in the abdomen because that end is no longer attached to anything. I’m hoping/praying that they will be able to take down the ileostomy and attach that portion to my rectum. It will all depend on how risky it will be and if Mayo is willing to take me on. Chances are they will not. Say a prayer for me!

    Thanks for caring for all of these people, including myself…..it really does help to have people that care.

    Take care,
    Jamie

    [Reply]

  19. avatar

    mdhilton says:

    June 29th, 2008 at 3:29 am

    Jamie,

    Good to hear you are getting to the bottom of what is inside! Knowing and having the facts is a HUGE part in feeling more calm about things even if it isn’t the way we wanted. Even if you can’t have a pull-through, you will be able to live well with the ileo. I know there are lots of people who are happy and healthy with the ileo, like Chelsea here: http://ucstory.wordpress.com/?s=chelsea

    wishing you good health!

    [Reply]

  20. avatar

    Jamie says:

    June 30th, 2008 at 3:00 am

    thanks for everything…..
    Jamie

    [Reply]

  21. avatar

    Jeremy Harris says:

    June 30th, 2008 at 2:43 pm

    Good stuff! In the past couple of years I went through almost the same exact thing. I had a question about weight gain – I struggled to gain weight(weighed 108lbs when i got out of the hospital from my 2nd Ostomy Takedown surgery) and probably weighed between 118-133 for a year after that. Finally in the past year and a half or so i’ve been able to gain weight and finally put on some muscle/fat.

    It might of been poor diet, but I did try for a while to put on weight(weight gainers, even doing 4000calorie a day diets) and it was still really difficult.

    [Reply]

  22. avatar

    Megan says:

    June 30th, 2008 at 11:36 pm

    Hi Jeremy,

    Weight has been an issue for Mark as well, at 5-6″ and 120ish UC weight, now after surgery he is 140pounds. Not sure how the weight gain happened. I figure he/we eat pretty healthy overall, try to eat balanced, eat mostly organic, lots of bread, pasta, veggies, white meat, etc…Not high in sugar drinks, mainly water and some gatorade for sugar/sodium to hold the water. But Mark also uses his body for work being a contractor so he is lifting and using his body and I think that helps keep the muscle mass. I think more than anything just an organic and balanced diet with a good amount of excercise is the trick.

    [Reply]

  23. avatar

    Traci says:

    July 2nd, 2008 at 7:25 pm

    This is a wonderful site. I wish I had seen it before now! I just had the ileostomy take down. Funny, because I had this same idea and took my camera to the hospital, but my husband thought I had grabbed it by mistake and took it back home…anyway, I’m really glad you did this for other people in the future. I am glad your recovery is coming along well. Best.

    [Reply]

  24. avatar

    Megan says:

    July 3rd, 2008 at 4:58 pm

    Thanks Traci. Oh, it would have been great to have had a woman’s perspective in photos from the surgery. I know just as many woman have it as men! Hopefully, a female will document the surgeries like we did so that other women have that perspective.

    How is your recovery going?

    [Reply]

  25. avatar

    carter99 says:

    July 9th, 2008 at 1:13 am

    Hey Guys,
    I think you mentioned that Mark started taking immodium around 2 weeks after ‘takedown’. Do you remember how soon he started taking fiber supplements? I wasn’t told not to take that stuff or at even hold off for a while; so I’m of the thinking that if they didn’t say ‘not to’ then it must be fair game.

    Carter

    [Reply]

  26. avatar

    Traci says:

    July 9th, 2008 at 5:45 pm

    Thanks for asking. My recovery is up and down. Sometimes I feel like I have a handle on it and others like last night and today, I am in the bathroom every hour. I am hoping this is normal. I am trying the immodium as recommended by my doctor as well, but more often than not it works too well and I end up feeling, well, constipated but still feel like I urgently need to go to the bathroom. Did your hubby ever feel this way? Did the metamucil help? I bought some but haven’t tried it yet cause I have a follow up on Friday and figured I’d ask the Dr.

    [Reply]

  27. avatar

    mark says:

    July 10th, 2008 at 6:12 am

    Hey Tracy and Carter,

    Under photo 12 on this page, there is a link “How Imodium works” – click on that link Tracy and read about how our body processes a medicine like imodium, Jan Dollar really explains it well. Once you understand how it works you may find you have better success with it slowing down your movements.

    As for fiber, I started “Benefiber” in the hospital and now I take metamucial. My info here is rusty, but Benefiber is a soluable fiber so after step 1 and when in hospital after step 2 took benefiber. Then when home around week 4ish once I was having semi-regular BMs I moved up to Metamucil. But metamucil is a thickener so it can be hard on some people b/c it makes things too thick. for me it works well, and now I take it once a day, usually at night time. And I take between 2-4 imodium a day depending on how things are going. When you take fiber, watch for gas. If you get gas increase, cut back on the fiber.

    Tracy,
    If you are having urgency, you should definately talk with your surgeon or GI, you may need an antibiotic for some type of pouchitis or cuffitis (not serious so don’t panic) but they may just be something potentially causing urgency. Also, you should post a question on http://www.jpouch.org and ask about urgency and you’ll get some better answers than mine probably.

    Mark

    [Reply]

  28. avatar

    Erin says:

    July 16th, 2008 at 8:33 pm

    Hey Megan and Mark – I had my reattachment about 4 weeks ago, and it seems I JUST figured out a few things to help me. I take immodium once a day at 6 pm. I’ve been having 6-10 bms a day with 1-2 at night. I had horrific gas, but take gas-x after every meal and once in the middle of the night. I panic sometimes thinking, how am I going to live the rest of my life without my colon and with this j-pouch??? I went through really bad withdrawal from the opiates I was on, and was in the hospital for 10 days before my reversal because of a blockage. My back still hurts a bit as well as my stomach muscles, but it now seems to be subsiding some.

    I’m glad you’re doing so well, Mark! I hope everything keeps going up for all of us!!!

    [Reply]

  29. avatar

    Rob says:

    July 21st, 2008 at 3:20 am

    Hi Erin, First of all I hope your not panicking as much. Easy for me to say right? Many of us panic about life’s uncertainties but you have to keep the faith up. Without that I would be nothing and a total mess. You mentioned Imodium. Ask you Doctor about LOMOTIL. I take 6 in the morning and I’m fine right to the next morning. I don’t know what I’d do without it. It’s an RX and the max allowed is 8 daily. Take good care of your self Erin and you’ll be fine.

    ROB

    [Reply]

  30. avatar

    Rob says:

    July 21st, 2008 at 3:46 am

    Hi Mark and Megan, I emailed you privately before Mark but I forgot to tell you that after all I’ve been through, seeing your picture with the bag was the very first time I saw anyone with the guts to show it. That second you changed my life so much. Not that I was ever inbarest about a stoma but I never showed anyone at all (just scared I guess). Like I told you before, I’ll be going under the knife again within 2 weeks 4 a permanent colostomy and I’ll post the pictures. I never would have thought about doing that until I saw your photos. Helping others is what I’m all about.
    BTW…YOUR TWO REAL SPECIAL PEOPLE,

    ROB

    [Reply]

  31. avatar

    mark says:

    July 21st, 2008 at 6:58 am

    Erin,

    Be sure to read this post about how imodium works, Jan Dollar explains how our body takes imodium, when you understand it you might be better able to use the imodium to benefit you more.

    http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/5601080242?r=5601080242#5601080242

    I too had really bad gas, but that has settled down now, just be patient and give your body time to adjust. As for the gas, are you on any fiber, I know fiber can cause gas for some people. Do keep us posted, let us know how your recovery goes!

    Hey Rob, I am so glad the photos helped you, Megan was really good about normalizing my bag, photos were her way of showing our family/friends what we were dealing with. We figured we’d share it with the world since you gotta admit, it is kinda cool and weird to have an ostomy. Whats funny with the ostomy was how normal it became in my life so quickly. I guess anything was better than feeling UC sick. How long have you had your jpouch? And why are you losing your jpouch? Did you have UC or Crohn’s?

    [Reply]

  32. avatar

    Rob says:

    July 21st, 2008 at 8:15 pm

    Hi Mark, I had Colon Cancer when I was real young and 15 years later it came back but this time it spread to my butt. It was all removed surgically so no reason for chemo or radiation this time. Since then I’ve had 6 surgeries with no success so I have no option but to have the colostomy. I think I handled the bag like a trouper but of course I’d would rather not have had it. Now I have a hernia in the same place my stoma was (incision hernia). Actually I’m having 3 surgeries in one. The Colostomy, the hernia repaired and butt closed. You could imagine how much I want this over with and my life back. I know that when this is all over I’m going to be better than ever.

    ROB

    [Reply]

  33. avatar

    Rob says:

    July 24th, 2008 at 4:26 am

    Hi Mark & Megan, Weird and cool it was.
    I’ll be going in the hospital on the 8th of August . This time the stoma is going to be on the right side. Three surgeries then back to my room, I’ll wake up and scream WHY ME!!!( just kidding). I really look at all of this as a blessing. I wish more people wouldn’t fall victim to that “self image “ thing. It takes to much time and energy away from what’s really important. I know I’m in for a lot of pain and that bothers me a lot. I remember the last surgery the pain just took over. I was a mess so this time I told the surgeon to just keep me drugged up to the max. I’m usually not like that but enough with the pain already!!

    Take care you two,

    ROB

    [Reply]

  34. avatar

    mark says:

    July 25th, 2008 at 7:26 pm

    Rob, you seem in a good place to be having the surgery. On the 8th, little Emily at http://www.sweetsliceoflife.blogspot.com is also going into surgery. So, hopefully both of you will be getting a new lease on life those days. And I can’t agree with you more that the boddy image thing is shame, but as we know how important body image is, and how devasted it can be with these diseases and surgery.

    [Reply]

  35. avatar

    Mitesh says:

    August 6th, 2008 at 8:40 pm

    Hi, Mark

    I am a 19 year old student, I was diagnosed with Ulcerative Colitis at the age of 15 years old. Through my years of suffering with this I have tried several medications although still have a bad condition and no medication seems to help me. After reading your story it has really gave me the courage to think about having the operation although I still fear of it. How long did it take you to recover fully after the operation? Was it a painful situation to go through?

    Thanks

    Mitesh

    [Reply]

  36. avatar

    mark says:

    August 7th, 2008 at 3:23 pm

    Hi Mitesh,

    This would be a really hard disease to have during your teenage years – sounds though like you are considering surgery pretty seriously? Deciding on surgery is really one of the hardest decisions myself and my family has had to make. I tis consider an “elective” surgery and yet seems so scary because it is such a major major surery and who knew we could live without our colons?!

    What I can say is that for me the process of decising to have surgery took about 3 years because it was scary to me as well, some people make the decision quicker – you’ll have your process making htat decision. On this About Us page are some links about 34 paragraphs down on the page that will link you to other posts where people are talking and asking about “how did you know it was time for surgery” you should really look at those: http://ucstory.wordpress.com/about/

    And below is the link to an excellent webcast about making the deicison for surgery you and your family should really check it out, it will help to remove some of that fear when you better understand why doctors recommend the surgery, what it means, etc..

    http://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/

    As for me, my recovery from step 1 took about 5 weeks, and at about 3 months I was feeling totally normally, and then after takedown my recoery was quick and was only about 3 weeks that I was down and felt great really quickly after that surgery. And for me the pain wasn’t too bad at all, I think after years of UC this pain was welcome because I didn’t feel UC flu sick anymore. If you are worried about potential pain, you should definately talk with the doctors about that, and also you could inquire some jpouch.org and find out others opinions on that as well. But pain shouldn’t be your main focus, I think it comes and goes with the surgery pretty naturally.

    Mark

    [Reply]

  37. avatar

    Mitesh says:

    August 10th, 2008 at 6:35 pm

    Hi,

    Mark

    Thank you ever so much for the information you have provided, I shall take a look through the websites. Just one more question, Do you feel you live a normal healthy life after the operation? Due to myself being very thin not being able to put weight on, i was wondering would this be the case of having UC?

    thanks

    Mitesh!

    [Reply]

  38. avatar

    mark says:

    August 10th, 2008 at 10:34 pm

    Mitesh,

    I just put up this detailed post about my 9 month status point. Click on the link to get to the post, I have pictures and all. You’ll find that I do address my weight and I talk about how 100% normal my life is these days. THe only thing I have that reminds me I have a jpouch or once had UC is this blog -

    http://ucstory.wordpress.com/2008/08/08/mark-9-month-jpouch-update/

    Mark

    [Reply]

  39. avatar

    jay says:

    August 11th, 2008 at 10:30 pm

    Thanks a lot for publishing this. I ahve been struggling with UC for a few years now. You have answered so many questions I had.

    [Reply]

  40. avatar

    Laura says:

    October 13th, 2008 at 3:44 pm

    Mark and Meghan-

    Thank you so much for your blog. I am 24 years old and, after suffering from UC for 3 years (an active flair for the last year and a half) and running out of drug options, I have decided to undergo surgery to “cure my colitis”. This is an especially difficult decision for me (not that it is an easy one for anyone) as my husband and I are living in the UK and all of our family is in the states. The next few months will surely be difficult but I thank you for your extremely informative blog and am sure I will refer to it often. I find it very full of hope.

    Laura

    [Reply]

  41. avatar

    mark says:

    October 13th, 2008 at 5:28 pm

    Hi Laura,

    With your family away you may want to create some sort of blog or something for them to follow and support you through the surgery. We found having the photo blog for our friends and family was a great great source of support!

    Also, you can find good support on http://www.jpouch.org (tends to be more U.S. people there, but some people from U.K. use that board).

    But at http://www.iasupport.org/ this support group is primarily used by people in U.K. and Europe. Which might be good for you if you need U.K. info.

    Keep us posted, and yes this site is full of hope because you will regain your life back after surgery and no longer need to live sick!

    Mark

    [Reply]

  42. avatar

    Juan says:

    October 14th, 2008 at 11:27 pm

    Hi,I watched your pics mark and they are helping me a lot,i made a coment in the other site about 10 month ago may be you remember me,good luck

    [Reply]

  43. avatar

    Day 9 « A Midwife’s Muse says:

    October 23rd, 2008 at 10:11 pm

    [...] is excellent as it means that once son has recovered from this surgery and, fingers crossed, the ‘take down’ surgery he will be almost back to how he was 2 years ago and before his ulcerative colitis [...]

  44. avatar

    Dana says:

    October 24th, 2008 at 9:22 pm

    I just wanted to say ~ I really appreciated this post. I am about to have my surgical takedown Nov 10th and this has helped.

    Thank you both

    [Reply]

  45. avatar

    Eric says:

    October 25th, 2008 at 3:48 pm

    Dana: I’m having my takedown on the 4th of November, if you would like to compare notes or have a takedown buddy or whatever, I think it’d be cool to talk to someone in real time going through exactly the same thing. Let me know, you can comment here and I’ll see it.

    [Reply]

  46. avatar

    dani says:

    November 18th, 2008 at 9:31 am

    Thanks for your blog, im 17 and had my reversal 3 weeks ago and im still having really loose stools and kinda miss the freedom of the bag but hopefully soon the urgency will go away and my stools will become more solid and someday i will be able to eat like you in the last pic ! Dani

    [Reply]

  47. avatar

    mark says:

    November 19th, 2008 at 9:52 pm

    Hey Dani,

    You may want to visit http://www.jpouch.org and find out how others BMs go after takedown, I know that many people on there have a period of time after takedown where their movements are loose and it just took time for it to thicken up. Also, talk with your surgeon (or GI) about starting an anti-diarraheal like imodium, and with your doctors okay, you may want to try a fiber supplement to help thicken things up like Metamucil (but fiber seems to give some people gas which can maybe not feel good for some people with a jpouch) – Again, check out jpouch.org and ask there how others manage that loose stool in the beginning.

    Stay well,
    Mark

    [Reply]

  48. avatar

    Kathy says:

    December 3rd, 2008 at 12:19 am

    HELP…I am currently with my 19 year old son in the hospital on day 8 after take down surgery. He started vomiting 2 days after surgery and had to have an NG tube up his nose and down his throat for 1 1/2 days. I feel he is being pressured to leave but he is eating next to nothing and barely walking because of constant nausea. He has lost a lot of weight. He is off the IV and and is drinking plenty of water. He has loose stools but doesn’t eat anything to thicken them up. The nausea meds don’t help that much. He did not have nausea at all with his first surgery. Have you heard of anything like this before?

    [Reply]

  49. avatar

    mark says:

    December 3rd, 2008 at 7:54 am

    Hi Kathy,

    I’m so sorry to hear about your sons situation right now – you must be very concerned. I’m personally not familiar with his situation but you should visit http://www.jpouch.org and ask on there if anyone has any experience or advice for you. I find http://www.jpouch.org to be the best support forum for quality jpouch surgery related info.

    Mark

    [Reply]

  50. avatar

    Eric says:

    December 3rd, 2008 at 4:27 pm

    Kathy, First off: you should not be pressured to leave the hospital, ever! For my second surgery, I had some complications and I was in much the same state as your son: NG tube, weak, vomiting, etc. I actually vomited the first day out of the hospital, too. Here are my thoughts, get him to eat! You might even have to feel like you are forcing him (verbally, not physically!), I know how tough it is to feel that way and not want to eat, but the fact is, solid food and the ability to digest it are your ticket out of the hospital. Without this, and BMs slowing down, you are at risk for dehydration and malnutrition. Oh, and GET HIM TO WALK.

    [Reply]

  51. avatar

    Yves et Nathalie says:

    December 21st, 2008 at 9:49 am

    Thank you so much Mark and Megan for your wonderfull site!
    It help both of us!!!
    Yves had his colons remove on september 17th after almost six years struggle with UC and the j-pouch operation is set on january 20th. He gains 25 pounds and he’s feeling really good…no pain and we can both sleep all night (only three times, he had leaks problems)!!! He is able to go skiing but can not work for the moment. He’s a firefighter and the city prefer that he gets some rest for the next operation…question of insurance too!!!

    We’re from Québec, the french canadians…
    so sorry for our english writing!!!

    I would like to hear from you and your girlfriend…how she was able to deal with her anxiety and help you more to go througt this other step.

    Thank you again…I feel better this morning after reading your story!!!

    Yves and Nathalie

    [Reply]

  52. avatar

    Megan says:

    December 22nd, 2008 at 3:32 pm

    Hi Yves & Nathalie,

    So pleased to hear that Yves is doing better – sounds like he was sick about as long as Mark. Talk about a welcome change when they get healthy again, even if it means healthy with the ostomy bag, right?

    You asked about how to deal with anxiety and you more throughout the next step and for me the hardest thing was helping Mark make the surgery decision and our prep going into step 1. I was really tense and anxious during that phase. By the time step 2 came (3 months after step 1) we had learned that if the jpouch didn’t work that living with the ostomy would be okay, so that soothed a lot of anxiety. Also, the jpouch surgery and recovery was a lot easier than step 1, but what was hard was some of the symptoms early on with the jpouch adjusting felt to Mark like UC. Especially during the first two weeks or so when he was pooping lots and up all night, his skin hurt from using his anus again. This was a hard time because he was concerned maybe he should have stayed with the bag, but those symptoms quickly passed once his jpouch settled in and he has never regretted the decision.

    I think for us the biggest thing for anxiety is that we always worked together as a team, he would work not to take out bad moods on me, and I would hard to not blame him for being sick, or being out of work, etc…That way then we didn’t add any more stress to an already difficult situation. We just learned to be really gentle emotionally with each us and know that we were a team, no body was to blame for our problems, and Mark and I have always had an unspoken rule in our house that if one person is down (blue/depressed/scared/anxious), the other person has to be positive. We knew that only one of us could be down at a time, if both of us were down at the same time then if felt really heavy in the household.

    Here is a post he did at his 9-month jpouch update that may be encouraging for you both: http://ucstory.wordpress.com/2008/08/08/mark-9-month-jpouch-update/

    Please stay in touch and you might want to read through the previous posts and find posts by Jenelle. Jenelle is a Ph.D. Candidate in Psychology and about to get her jpouch and on the site she offers great thoughts about coping and more, plus, she is Canadian – not French Canadian though.

    Stay in touch,
    Megan

    [Reply]

  53. avatar

    Michael says:

    December 24th, 2008 at 11:16 pm

    Hi, Mark and Megan. I’ve spent all night reading and looking at your pictures and thinking about all that you’ve went through. I’m 18 and was diagnosed with UC over 2 years ago. I have not had the greatest of times with this disease. I am/was very very active, I am supposed to play college tennis next year on a scholarship to a nearby college. I have tried just about every medication possible, you name it I’ve been on it at one time or another. Also, I’ve been on prednisone ever since I’ve been diagnosed, I know there are problems that can arise from being on that steroid for long periods of time. Do you still take medication at all other than imodium and metamucil? I take pills like candy and am really getting sick of them. I see a specialist that is going to try this new injection on me called Cimzia. Ever heard of it? If this doesn’t work I am seriously considering surgery… Anything you have to offer would be greatly appreciated. Thanks. Hope all is well.

    [Reply]

  54. avatar

    mark says:

    December 25th, 2008 at 12:28 pm

    Hi Michael,

    Congrats on the tennis scholarship. Sounds like you need to figure a way to get your health back so you can use that scholarship fully. I’m assuming your GI has mentioned surgery to you so that is why you are doing research, etc..? You should take the time to listen to this great webcast that was hosted on Colitis Health Talk about making the decision for surgery. They talk with a surgeon and she explains how doctors base talking with patients about surgery and why. It should help you understand the medicines, like prednisone and the surgery decision:

    http://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/

    I haven’t heard of Cimzia but the meds change so quickly that it could be new since I was on UC medicine. You may want to post on healingwell.com/community on the UC forum and see if anyone there with UC is on Cimzia.

    I am not on any medicine other than taking fiber and immodium, but I don’t even take those all the time because I get lazy or like you I don’t like always having to take something. I don’t have to take the fiber/immodium but they do help slow me down and thicken up my BMs.

    If you are considering surgery, you should listen to the webcast, then go to http://www.jpouch.org and post on that forum about your considering the surgery. It might be helpful for you to hear what others say about how they made the decision and stuff. As you can gather from my blog, I am doing well and really happy with my decision. It took me years to decide but when I did decide I knew all my medicine interventions weren’t working and I was ready. I had lots of family/friend support and I scheduled the surgeries for the summer time when it best fit mine and Megan’s schedule. My advice to you is to also send you parents/support system to our blog and get them on board for what the surgery would mean and the recovery time. And from there as a family you can start making decisions that are best for your health and future.

    Keep us posted, and if you ever want to blog your story and decision making process on our site, let me know. Having an althete tell their story would be very inspiring to many others.

    Stay positive,
    Mark

    [Reply]

  55. avatar

    Yves & Nathalie says:

    December 26th, 2008 at 7:51 pm

    Thank you SO MUCH to both of you!!!

    You can’t imagine how your website and your email response help us deal with all of the things we go through!!! You know what we mean…

    Wishing you both a happy new year!
    Health and precious goods moments with all your love’s ones

    Yves & Nathalie

    [Reply]

  56. avatar

    Michael says:

    January 4th, 2009 at 3:11 pm

    Hey sorry its been quite a while since I last posted. I have been busy, which is good I guess and I had trouble finding this page. I ended up missing a month of school this year from Thanksgiving break through Christmas break. So tomorrow is my first day back in quite awhile, I am pretty nervous because I know that it is going to be hard and that I will have to go to the bathroom a few times throughout the day. That is the thing I hate the most, when I have to miss some class just to use the bathroom. The main reason I would want surgery would be to get of these meds, I really can’t stand them. I am also switching GI doctors and have an appt in about a month. I had that Cimzia injection not too long ago and am having another one this Friday, so I hope that helps somehow. I am really just getting sick of it. I just can’t wait to be done with highschool, that will take some stress off I’m sure. But I also have my tennis season coming up and I ended up missing basically the whole season last year. I was in the hospital for awhile and got too behind in school to go back and still finished the year out on time basically teaching myself. So I hope that doesn’t happen again. Thanks again listening and replying.

    [Reply]

  57. avatar

    Chaz & Lori Burton says:

    May 25th, 2009 at 11:36 am

    Mark & Megan,

    Chaz & I just wanted to thank you again for this site. It continues to be a source of knowledge for us. Chaz just had his takedown Thursday & is doing fine. We are moving right along!!

    http://www.mylifewithcrohns.wordpress.com

    Lori

    [Reply]

  58. avatar

    Chaz & Lori Burton says:

    May 30th, 2009 at 1:40 pm

    We are 1 week post takedown and things are CRAZY!! We totally feel like we are reliving the past. The BB is pretty under control, but the urgency is full force. He has had a couple of stretches where things are alright, but then the urgency comes right back. We tried to take the boys to Target this morning for just a few minutes. As soon as we entered the store ….Chaz was nervous & having feelings of having to go. He fought through it, but then ended up going before we left…..of course….NOTHING!! We don’t want to be discouraged, but we just feel like it’s UC all over again. He is so tired of being the ‘ONE’ to ruin things…you know the ‘sick one’. I guess at least he doesn’t have the stomach pains like with UC. ;-) He just feels with the bag he got his life back & now he is back to square 1…just with no colon. I am trying to continue encouraging him, but there is only so much I can say. I reread your post up above about how your 1st few weeks were difficult as well. Glad to here things got better for you….did you experience similar things to Chaz? Lori

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    Mark Reply:

    Hey, See the recent comment I just made to Aaron and to you guys because I think that may be some of what Chaz is feeling. Of course, not being a doctor on this I can’t say it is normal for sure, but I did feel pressure on my anus (is that what Chaz is feeling as urgency?). I could feel pressure and then I would try to hold it as long as possible but in the beginning I could only hold it about a car ride and when I’d get to a bathroom sometimes I’d have a BM and sometimes I wouldn’t. I’m not sure what part of all that pressure feeling in the beginning was newness and anxiety of their being a possible problem, newness of getting used to using my anus again for BMs, or a real problem. My advice is to give it a couple more weeks before thinking there is a problem, my first few weeks were really rough emotionally and physically. As long as Chaz isn’t in pain, isn’t bleeding, isn’t having accidents he is probably in good shape. He just needs to remember some people can take up to a year to adjust fully to the jpouch. My surgeon said it best when he told me to patient because we were trying to train the small bowel to do something it is NOT intended to do.

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    Chaz & Lori Burton Reply:

    Thanks Mark, that is what I am feeling. I feel pressure on my anus, so I squeeze my butt together because I feel if I don’t I will crap on myself. This can last anywhere from 3 hours to 10 hours. Although lately it has only been 1 to 2 hours. I agree with you, I need to wait a few weeks before I can make a real judgment on my new pouch. I am not bleeding, leaking, or having accidents, so that is a good thing. Thank you Mark and Megan for helping in all that you have done and are continuing to do. Chaz

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    Mark Reply:

    Chaz, I think a big part of that feeling you have now is just how the jpouch feels, if I pay attention I still feel that pressure on my anus, but now i’m just used to it and I’ve learned how long I can hold it (getting longer with time). Also, when you have jpouch a little longer you may want to try immodium and fiber aids to see if anything helps you manage your jpouch optimally. Your surgeon will give you the okay on when to take aids.
    Mark

  59. avatar

    Brenda Jacobs says:

    September 5th, 2009 at 9:08 am

    Mark,
    I have a 21 year old son who has had battled Chrons/Colitis since the age of 9. He sees a surgeon on Wed., Sept. 9. He has found no one to talk with about the surgery. I read your story. As a mom I have to say I am scared for my son, but his quality of life is at such a low. He is a senior in college and missing out on so much because of his health. Would you be willing to correspond with him about your experience and answer some of his questions?

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    Mark Reply:

    Hi Brenda, Of course I’d be happy to correspond with him. There are lots of us on this website that can offer great support. Brevin has just gone through all his surgeries and he has documented it all here http://www.jpouch.net/author/brevin/ . Casey and Carter are both in their early 20s.
    Please show him our site, my photos are all here documented my surgeries http://www.jpouch.net/photos/surgery-1/ . The main thing is for him to have a positive mindset going into this and he’ll heal much faster and get back to living a normal healthy life. I have a wonderful quality of life now with my jpouch – zero regrets (other than not having the surgery sooner). Once your family and son look at the pictures, it will help remove some of the surgery fear. You need to celebrate that the surgery will allow him to have a healthy normal quality of life.

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  60. avatar

    Shrimp40 says:

    September 5th, 2009 at 12:30 pm

    Hi.
    I had UC @ the age of 9. Had my large intestine removed @ the age of 16 1/2, n had a j-pouch @ the age of 17. It made my quailty of life so much better than it was b4 the pouch, but after 22 years it was going rong, I really had no choice but 2 have my 2nd Stoma, but I still have my j-pouch it’s just not bein used anymore.
    If I had my time ova I wud still make the same choices I made bac then.

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  61. avatar

    JC says:

    September 10th, 2009 at 8:36 pm

    I just found out that I have dysplasia in my rectum. I’ve had UC for 18 years and the surgeons obviously recomended total colectomy.

    My question is this. I have 1-2 bowel movemetns per day (Remicade has worked miracles for me), it seems that Iwill have 4-6 bowel movements with the operation. I don’t see how this will improve my life. How do you snowboard??? Don’t you have that urgency?? I am so scared that my quality life will go down. I have two young children and I want to contnue doing activities with them. I would appreciate your insight. Thanks in advance.

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    Mark Reply:

    My life is 100% normal with my jpouch. I snowboard easily, I do everything easily and normally now. No, I do not have urgency, I can 100% control my BMs with my jpouch. Yes, I have 4-8 BMs per day but it is just as easy as going pee. Your diagnosis is hard where you have to have the surgery due to dysplasia and not feeling sick. You should definitely check in with ML (merry lynn) at her blog, she is in a VERY similar as you and it may help to connect with her. Here is a link to her site: http://www.jpouch.net/2009/06/19/colitis-to-dysplasia-surgery/

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    Mark Reply:

    And you’ll want to visit Chaz, he is a busy Dad with a couple young children and he is “Moving and Grovin” (the title of his recent blog post for celebrating his sons birthday) http://mylifewithcrohns.wordpress.com/

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    Jackie Z. Reply:

    Mark,
    How long did it take you to be able to do those “normal” things like snowboard? I mean could you do them in between surgeries? Or after it was all done? If After…how long did it take? So many questions!

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    Mark Reply:

    I was active like snowboarding 8 weeks after Step 1 while I had my temp ileo I felt GREAT. Once I had recovered about 5 wks after that big step 1, I was able to do whatever I wanted. My stamina was low, but that was more related to having been sick with UC for so long and less about the surgery. See, it is hard to explain but after step 1, even though I hurt from some surgery recovery, I felt incredible b/c I didn’t feel UC sick anymore (like I had constant flu). and then I needed only about 4 weeks after step 2 to get back to things like snowboarding, but at 2 weeks after that surgery I was easily able to do mild cardio, lift smaller stuff, etc..I felt great I just needed a little time for my temp ileo wound to heal, etc…

  62. avatar

    jm says:

    September 10th, 2009 at 11:05 pm

    JC,
    Strange as it may seem having to visit the toilet 4-6 times a day will not bother you anywhere near as much as you think it will, after all you probably visit that often already just to empty your bladder you’ll just link the two tasks. The key to this is lack of urgency, and most of us do not suffer that, if you are able to go to the toilet when it suits you then the actual number of visits becomes much less relevant. We have a tendency to focus on how often we go and use that as a measure of our QoL when the truth is that providing it is not too high and you control when you go it actually does not matter that much. It took me a while to realize this, but once I did my whole outlook changed, I stopped focussing on my pouch and got on with life and haven’t really looked back.
    Another thing you may notice, as did I, is that after having UC for 18 years you probably do not realize how ill you actually are. Before my surgery my UC had been pretty well controlled with drugs and I thought at the time of surgery it would just mean no or fewer drugs to take and no more acute attacks. What I didn’t realize was how inefficiently my body was running, over the 18 years I had had UC I had just adjusted to the way I was feeling and it had become the ‘norm’. After surgery when I got my health back I could not believe how much better I felt, it was not until then that I realized I had been plodding my way through the days and just getting by. Now I was like the Energizer Bunny, full of energy and bursting with life and able to spend more quality time with my two young kids – I did not think this was possible before my surgery because I simply did not realize how ill I actually was.

    HTH

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    JC Reply:

    Thanks Jim for your insight. I appreciate the help.

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  63. avatar

    JC says:

    September 13th, 2009 at 10:19 am

    One other question. Has anyone regretted getting the J-Pouch? Did you feel you had more freedom with the bag?

    Thanks

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    Mark Reply:

    After coming off of years of UC, the bag was heavenly in that I felt great and was free to do as I wanted. But the bag is the bag and it needed care, the skin needed care, emptying it wasn’t a big deal but I prefer using my jpouch because it is easier. I don’t have to keep up any appliance maintence, and when I have to go to the bathroom I just go. I think my jpouch is easier than the bag. However, I know that if I ever had to go back to the bag that my life would be just fine.

    I think if you are deciding whether to keep the bag and not deal with the jpouch surgery you should really consider the jpouch surgery. I figure the worst case scenario is the jpouch doesn’t work and you get the perm ileo. But if the jpouch works, well, then you are bag free.

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  64. avatar

    Shrimp40 says:

    September 13th, 2009 at 1:16 pm

    Wen I had my J-Pouch at the age of 17 (1985), it was great, but after 22yrs it started 2 go rong, so I had 2 hav another bag fitted, but I do still hav my J-Pouch, it’s just not in use.

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  65. avatar

    chris says:

    November 24th, 2009 at 1:52 pm

    Wow, just got my UC diagnosis yesterday. This site is very informative and Im glad for your success.

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    Mark Reply:

    Chris, it is crucial that you note – most people with a UC diagnsosis DO NOT need to have this surgery. You have lots of medical options that will likely put your UC into remission. There are great support groups for UC, you may want to visit http://www.healingwell.com – they have a great UC forum. Of course, feel free to visit us here if you have any questions.

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  66. avatar

    kim says:

    January 29th, 2010 at 4:42 pm

    hi mark. my name is kim. i have a similiar suituation but instead of having UC i have FAP. im am getting ready to have my first takedown of the ileo next month. i have to ask 2 questions. 1: do you have any advise or words of wisdom for me to help calm the nerves? and 2: the hospital you are at in these pictures looks so familair, where you at all by chance at UCSF in San Fransico, CA?? i respect that privacy, so if you feel more comfortable awnsering that, you may do so at oakiechick21@aol.com
    thank you so much for your time. i see that its been a couple years now, how are you feeling?? did things turn out smoothly with your takedown?

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    Mark Reply:

    Hi Kim, We have a lot of people on the site with FAP getting this surgery too – you guys seem to heal very quickly often b/c you are healthy going into the surgery as compared to a lot of UC people who go in so sick which makes recovery more difficult. Words of encourage are for you to read all the stories on this site and see our updates after surgery (click through the home page posts to find my 2 year update, Brevins update, and more). Most importantly you must stay healthy in your mind and spirit, go into this with low fear and high positivity that your life will be healthy and normal after this. FAP is an awful disease that moves quickly and colon cancer is hard to fight, so getting your colon out now is the only option. Yes, 2 years out my life is wonderful after takedown, my jpouch is great, my life is totally normal and healthy. We are expecting our first baby this summer and I’m living life to its fullest because of my jpouch. Yes, my surgery was at UCSF with Dr. Garcia-Aguilar, he has moved to City of Hope now, so maybe you are having your surgery with Varma (who is brilliant and did Brevin’s surgery).

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  67. avatar

    kim says:

    January 30th, 2010 at 9:58 am

    yes, Dr. Varma is my surgeon. she is wonderful. she was my mothers surgeon as well. that is al great advice. it does feel better knowing that someone else has also gone through this and has shared his outcome with others. its also good to have someone to be able to awnser questions as you did. thank you for that. your story is amazing. it gives high hope and great positivity that there is a chance of a normal life after having a diverting ileostomy for about a year now. i have had many many complications and have a alot of trips to the emergency room from this and i have increased my hope from reading your story. my doctors have actually told me that i had “a surgery from hell”. thank you for all your words of wisdom.. it truely does help calm me a little.

    AND.. congrats on your expected child :) being a parent is such a wonderul feeling! im happy to know that you can live a normal life after this life changing surgery. what things are you able to eat though?? any thing inparticulr that goes well?? or sets you off??

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    Mark Reply:

    see below reply, meant to put it here but messed up.

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  68. avatar

    Mark says:

    January 30th, 2010 at 11:44 am

    Have you also read Brevin’s story – he has tracked his whole UC surgery with Dr. Varma online and you can see after his takedown he is leading a great life http://www.jpouch.net/?s=Brevin

    No, I don’t stay away from any foods. You’ll learn real fast how to manage your jpouch, and find things specific to yours. I know foods that make me have more BMs or foods that will cause more liquid BM, but I don’t stay away from anything, I just decide what kind of BMs I’m in the mood to deal with. I also occassionally drink alcohol and eat junk food when I feel like it. Also, you will play around with things like fiber supplements and anti-diarraheal pills to see about thicken up and slowing down your system. So all together it will take time, but you’ll find a formula that works for you. And remember you need to give your jpouch time to adjust to its new job – so remember this IT REALLY DOES GET BETTER WITH TIME! Every year my jpouch settles in more and gets better.

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  69. avatar

    kim says:

    February 1st, 2010 at 8:36 pm

    that is all very helpful info! i will for sure check out that website. im glad to hear that things are on trak with you. it really does settle alot of thoughts and worries for my future!

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  70. avatar

    Charlie says:

    March 14th, 2010 at 2:06 pm

    Hi i just came across this website and found your story, i find it very inspiring and has put my mind at rest. Im 17 and had UC when i was 13, i tried all medicines and nothing worked. Eventually i had total colectomy at the age of 14 then jpouch construction at 16. I had the reversal of my stoma 3 weeks back now and im getting on okay, the first week was quite hard with me but then tried the immodium and has helped out alot. Im recovering well and hoping to get back to college in a couple of weeks, i cant wait to do get on with my life not worrying about Uc anymore.

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  71. avatar

    Issac Maez says:

    November 12th, 2010 at 3:47 am

    I really liked your own article write more..i will add you to their particular favorite

    [Reply]

  72. avatar

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    January 2nd, 2011 at 8:21 pm

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  73. avatar

    Black Diamond Engagement Rings says:

    January 9th, 2011 at 12:00 pm

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    [Reply]

  74. avatar

    Susie O says:

    April 7th, 2011 at 7:04 am

    Thank you both for all of the great info!! I can’t begin to say how much this helped my anxiety when I needed this same surgery in January 2011 after a bad fall with UC (after 20 yrs). I am scheduled for my take down April 15th – so again, to hear your personal story and great tips is reducing the fear that I have and also giving me real info – not just the clinical/textbook explanations. I am so glad you are doing well and hope that you continue to thrive. : )

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  75. avatar

    Susanne Sayers-Smith says:

    April 15th, 2011 at 11:05 am

    I was just looking on the net to see if I could find some photos of what a total with J pouch looks like on the inside of our bodies.  I had a total with a take-down at the age of 33, it failed and I had to go back and have the Stoma. Lived that way for a year knowing I needed to have my rectum finaled (what was left of it) and really could not see myself as an active person living with an ostomy bag forever.  Lucky for me I work in the Medical field and once I had the Stoma decided to work with other Ostomy patients as a product rep so I could learn more…I met my night in shining armor surgeon and had a J pouch 6 months later!  I am now 48 and live a great and active life. Yes, I use the restroom more then most folks and occasionally pay for spicy food but I feel very fortunate.  Good luck to you! BTW, the “tag skin” comes and goes over the years. I have had it removed but really it will come back anyway.  Susanne

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  76. avatar

    Kelly says:

    April 17th, 2011 at 12:52 pm

    Thank you for writing this! I just had step 2 of the 3-step j-pouch construction surgery, and I wanted to get some perspective on how long it takes to get used to the takedown, since I’ll be having mine in 5 weeks! The pictures really helped too. I’ll also take your advice into account and make sure I am not being overly grumpy to my loved ones, I definitely don’t mean to! I’m glad that Mark is doing so well!

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  77. avatar

    Pregnancy belly button rings says:

    June 25th, 2011 at 12:35 pm

    Dangling belly button rings are decoration placed on the stomach.

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  78. avatar

    weenicki says:

    August 24th, 2011 at 4:39 am

    hi there, ive just been for a check up at the hospital and my doctor asked if i have ever considered this pouch! i never thought id have a choice after getting a stoma, but after reading hows its done am not sure if i could handle going back and forth to the toilet 6 times a day. does anyone else have this problem?? ive only had my stoma a yr and love not running to the toilet every minute of the day and found am living my life again. any comments will help me if anyone else has felt this way xxxx

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    Eric Reply:

    That’s a great question, weenicki, and one that will vary from person to person. I had a really bad experience with my stoma, so I was more than happy to have the J-pouch. Like you, though, I was super hesitant about the whole going to the bathroom 6-8 times a day thing. When you say it that way, it sounds terrible. When you think about how often you pee, though, you are really just combining your activities. Make sense?

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    jm Reply:

    Eric’s correct you are most likely already going back and forth to the bathroom that many times at the moment. The thing is you don’t notice it. Why? Well because you go when you want to go and you have no need to rush, this is key. People often confuse urgency with frequency, largely because when we were ill they were they came hand in hand. This is something that changes when you have a pouch, you may have higher than normal frequency but typically will have a lack of urgency and that makes all the difference.

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  79. avatar

    Bruna Vargas says:

    January 2nd, 2012 at 4:31 pm

    Hello megan and Mark,

    I was looking online for pics of ostomy and ended up clicking on marks picture that came up and started reading the blog. I appreciate the courage and post you wrote with all the info and pictures of step bby step of what’s been happening to mark i can assure you it helps alot to know there is ppl out there living thru what we are living especially seeing the outcome of it all in the end which is what we look foward to. My husband was diagnosed with rectal cancer 1 week before our wedding in june 24 2011 and
    he has gone thru radiation, chemo by pills, and surgery part 1, surgery to put the port-a cath for chemo,he has a ostomy bag too and we have had our difficult times of stress too. He’s is now on his 3rd session of chemo and will continue until june of this year. He will have his 3 surgery in february to close up the ostomy and i look foward to him feeling as well as mark did. Thanks for all the tips and information. What was mark’s disease and what is UC??

    thank you for posting i appreciate it i wish i could have done that since the beggining to help other but my husband wouldn’t let me :P

    Thanks again,

    Bruna Vargas

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  80. avatar

    Remote Data Logger says:

    January 5th, 2012 at 11:27 pm

    I bookmarked it…

    Without doubt I proclaim that this is one of my favourite blog list….

  81. avatar

    Ulrich says:

    September 16th, 2013 at 7:27 pm

    Hmm is anyone elswe encountering problems with the
    pictures on this blog loading? I’m trying to determine if its a problem on
    my end or if it’s the blog. Any suggestions would be greatly appreciated.

    [Reply]

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