Photos 2: Ileostomy

Life Inbetween Surgery #1 & Surgery #2

(3 months between surgery #1 & #2)

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)

**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.

Picture 1:  Stoma and Scars

Here is the stoma (temporary loop ileostomy) after 6 weeks. We put a quarter there so you could see scale. His scars look good, and he has a shaving rash under his belly button. Overall his skin is doing well under the ostomy wafer, but there is some redness, not too bad though.

The south scar is flat and healing well. Look at the scar above in his belly button, it looks pretty good, eh?

Picture 2: Mark and Dad- 9 days after step 1 surgery and 9 days living with new stoma

Mark is reading about how to care for his ostomy shortly after the July surgery. He can’t work but he is there giving his Dad moral support. Ironically he is reading in this picture a SUPER helpful post that was on jpouch.org site. Jason’s Ostomy Instructions taught Mark about how to care for his ostomy, way more helpful than what the ostomy nurse tried to help with.  Survival with the appliance is talking with others who have one! Tips for new Ileostomists

Picture 3: Table from the “No Colon” Party – Be Sure to Celebrate!

We threw Mark a small “Welcome home, you have no colon” party, we had friends come into town and suprised Mark.  We unfortunately were having so much fun, we didn’t take pictures of the actual party.  We HIGHLY recommend that those going through this journey do celebrate the big things (like coming home from the hospital).  It is so important to celebrate our friends and family while we have them with us.

We noticed that from having sent out the photo blog as emails and cell phone pictures to our main people while he was still in the hospital, made it easier for people to support him.  So, at the party our friends/family were comfortable asking to see the stoma, watching it work. And in turn what this did for Mark was make him feel comfortable with the stoma and the situation.

We learned to celebrate from watching others enjoy their health instead of mourning the changes, for instance, Michelle had this incredible post running about what is your “best day” and she talks about her colon party:  http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/1681082832/p/1

Picture 4:  16 hour total stoma blockage (how we handled the blockage)

 

 

 

 

 

 

 

 

 

First, we wrote a post on jpouch.org and received fast responses which you can see here No Stoma output and vomitting Post.  What this did for us was allow us to remain calm because we had support online it wasn’t us going through this alone, but below is how we actually dealt with the blockage.

He had his first total blockage of the stoma, for 16 hours he created NO output!  He became ill and vomitted 4 times in 4 hours.  We tried the blockage remedies of hot compress, walking, shaking hips back and forth, grape juice, hot tea.

It was the ostomy nurse (whom we called) who said for him to take off his bag, take a long hot shower to see if the stoma was swollen and  to see if the hot shower would help it settle down. After the shower he drank hot tea/water, we massaged around the stoma, and he finally pooped.   He was exhausted and a getting a bit nervous, I sat with him the bathroom and just massaged above the stoma (almost like milking a cow style) to try to gently move whatever along.  Whatever was the problem was gone now.  He was exhausted all day afterward since he nothing in his system and was only on a soft foods for the rest of day.  We were about to take him to the ER to get fluids since that is the biggest concern, but we were saved by the bell so to speak.    We were scared some because his surgeon was now eight hours away because by now we had gone back home.  The stoma nurse said “YOU DO NOT LET ANYONE ELSE COME NEAR YOU WITH A KNIFE – If this is serious we will fly you down here and get you to your surgeon.”  This made us feel better to know there are ways to have surgery in places far from home and get back to the care you had if an emergency happens.

4 days later and Mark is still drained from the effects of the blockage.  His body is exhausted and he quickly has reverted back to his UC ways of ‘hating’ food.  The lesson in the story is to really be cognizant of the foods you introduce.    (Update after takedown – we learned that it was likely not food causing this and his other later blockages, but that he had some scar tissue that the surgeon later found during the “takedown”).

*I have to admit this was a really long, and scary night.  It left both of drained emotionally because of the unknown again of what might be happening. Just be prepared to be gentle with yourself and your loved ones helping you through this process — it can be really emotionally draining and you need to give yourself and your family time and room to heal both physically and emotionally.

**As we understand having stoma blockages is not hugely common (but not uncommon either), some people do have them, we think that maybe his blockages were scar tissue (surgeon said he found some scar tissue during his takedown).

***Ostomy bags come in other styles, and they are not all clear so you don’t have to see your output.  I’m not sure why but Mark likes the clear ones, he is always checking out his output.  I guess it is a good way to learn what foods will do when he starts using his jpouch in a 8 weeks.   Also, if you have a stoma, you really need to watch this thing work, it moves around, breathes, sputters, and if you watch Family Guy and you know Chris’s talking pimple Hank you’ll understand the stoma.

Picture 5:  Mark 3 Months Post 1st Surgery – Back to Work

 

 

 

 

 

 

 

 

 

Mark at work during week 13 after step 1 lapro surgery, and doing well. Here is at a job, he built some arbors for a client.

After 6 weeks he felt great, and was cleared by the surgeon to get to work (don’t do anything till the surgeon clears you is the most important rule : ).  Our biggest concern was him lifting things too heavy.  But the surgeon said it would be fine, and he has been back to work for 7 weeks and doing well.

For those going into surgery a big question is ‘how long will I really be out of work’;  for Mark the first few weeks after week 6, he was back at work, but he would get tired easily, so he did work half days on and off for about 4 weeks.

Also, no complaints with the ostomy bag, life is more normal with the bag than it has been in years.  He is able to lift things and move around without problems.  He does not wear the phoenix belt very often anymore, he found the belt was too hot and restraining for him, but others love the belt and we recommend you try it out for yourself because it may be just what works for you.

Picture 6 (series):  Ileostomy and wearing ostomy bag using the Phoenix Belt

*For Mark we didn’t document his changing of the appliance, and this is a question we get sometimes.  There are great resources for learning how to live with the appliance, however, here is a great photo and text explanation 12 Step Tutorial on Chnaging Ileostomy Bag.   Other sources are ostomates.org, and Jason’s Ostomy Instructions (which was really helpful for Mark).  More than anything you just need to find what works for you through trial and error, Mark changed his bag every 2-3 days, his skin couldn’t handle 5-7 days.  Jpouch.org Ostomy & Skin Forum can help you out as well.  Also, here is some info on where to buy ostomy supplies online that we asked on jpouch.org Websites to buy Ostomy Supplies Online.

Here are a series of photos with Mark showing how he wears his bag under the Phoenix Ostomy Support System – Belt. We’ve also heard that you can get this belt covered by your insurance.  The belt came highly recommened for comfort and ease of use. It is a little awkward b/c you have to wear the belt on its side so emptying can be tricky, but it does contain that bag which can be helpful.  Mark got the smallest belt size they offered (Small) and he had to have it sewn to make it a bit smaller.

Dressed with belt underneath. Getting ready to go to a wedding located 1hour away from home. It was so very very nice to go and not worry about Mark and UC problems. We still aren’t used to the freedom of living without UC.  Life with the ostomy is 1000 times better.

 

 

 

 

 

 

 

 

 

To follow up on Mark and his next surgery “Takedown surgery” or getting his jpouch surgery click here: 

http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/

Also, here is his 9 month update:  http://www.jpouch.net/2008/08/08/mark-9-month-jpouch-update/

© 2008 All Rights Reserved

 

Here is an interesting video Colostomy Bag Change Video (not made by Mark and Megan), but it is a fairly graphic representation of how the stoma and ostomy bag works.  Of course, this process varies for everyone but if you are a future ostomate of a temporary ostomy this may help you Visualize how things might work out for you.  The man in the video says he changes his bag daily, Mark only changed his every couple of days.  And his stool seems a lot thicker than Mark’s was probably because he has an Colostomy (large intestine b/c he only had a piece of his large instentine removed) and not an Ileostomy (small intestine, if you are getting a jpouch then your whole large instentine is gone so you’ll have an ileostomy).

135 Responses to “Photos 2: Ileostomy”

  1. avatar

    m says:

    July 11th, 2008 at 11:53 pm

    Hello, I see you are using my Colostomy Experience video for your blog.

    Watch it in better quality over at http://vimeo.com/409849

    M

    [Reply]

  2. avatar

    Abbey says:

    July 21st, 2008 at 2:03 pm

    Hi
    What an excellent photo diary and very informative. I work in stoma care in the UK and SecuriCare (who I work for) also have a pouch changing video have a look at our website:
    http://www.securicaremedical.co.uk/pouch-changing.asp or you can view it on Youtube ‘changing a stoma bag’.
    Welland Medical our sister company also manufacture a flushable stoma pouch (both flange and pouch flush) which also maybe of interest

    [Reply]

  3. avatar

    Megan says:

    July 21st, 2008 at 6:27 pm

    To Abbey and our Readers,

    We wouldn’t normally allow “spam” like comments on the site, however, we think that new ileostomates could benefit from the 4 short videos that Abbey’s UK based SecuriCare company has designed. The video on What is a Stoma is helpful in explaining the 3 different basic types of stoma.

    Please note:

    1) We have used any products by SecuriCare or Welland Medical so we do not know the quality of the products. Mark used Convatec products when he had his ileostomy.

    2) The video shows someone with what I think is an end colostomy (I think), you’ll see that the stoma shown in the video is long at about 2 inches, longer stomas typically mean it is not a loop ileostomy like what you see both Mark and Carter have. I think the reason that some stomas are longer is that when they are permanent they function better having a longer stoma. We should ask someone with a permanent ostomy to explain this better to us.

    Megan

    [Reply]

  4. avatar

    JM says:

    July 21st, 2008 at 6:54 pm

    Megan,
    The video shows somebody with an end ileostomy (colostomies are typically on the left side whereas ileostomies are normally on the right, though this is only a general guideline). Not all end ileostomies are permanent, anybody who had their pouch surgery in 3 stages will have had an end stoma after stage 1.

    People who have had both types of stoma (loop and end) tell me that loop ileostomies are much harder to deal with. This is largely due to the longer spout on an end ileo, this hangs down into the bag and waste falls straight into it. The much flatter loop stoma has a tendency to allow waste under the flange and thus cause leaks much easier.

    One thing I have found is that those who have only ever had a loop never thought it was too bad whereas those who had an end ileo first think they are a real nightmare, I guess the two groups simply have different expectations on how a stoma will behave.

    JM

    [Reply]

  5. avatar

    Bill says:

    July 29th, 2008 at 11:58 pm

    Thank you for sharing your experience. I am a nursing student working on a GI floor. I learned a lot from your posts. I wish you many happy years to come. You are a brave man, and I admire you.

    Bill

    [Reply]

  6. avatar

    mark says:

    July 30th, 2008 at 5:10 am

    Hi Bill,

    I’m glad to hear that it helped someone in teh medical community, especially a nurse. I am convinced that world would come to an end without nurses. I only had one male nurse during all my surgeries, but I really like having a guy. I noticed he was a lot more comfortable with me and my wounds, where the women tended to be more cautious and gentle he just did his work and left – I preferred that. Good luck with your nursing career and thanks for doing such an important career!

    Mark

    [Reply]

  7. avatar

    cindy says:

    July 31st, 2008 at 7:55 am

    thank you so much 4 being the brave soul you are i am deciding as i read your journey weather 2 get mine or just deal with the bathroom trama all the time i really appreciate you and megan sharing with us what a great couple with a great play by play god bless yall thanks cindy

    [Reply]

  8. avatar

    mark says:

    August 1st, 2008 at 4:27 pm

    Hi Cindy,

    It took me nearly 3 years to decide surgery was right for me and when that decision came to pass, it was so easy to make and felt very right. So, you just be patient with your process and let it happen naturally. At some point you’ll know if you can live with UC or want to live without UC.

    We have some great resources on here for people who are considering surgery, you should definately check out the two following links:

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

    AND

    http://ucstory.wordpress.com/2008/06/20/video-uc-to-j-pouch/

    Take care,
    Mark

    [Reply]

  9. avatar

    cindy says:

    August 2nd, 2008 at 1:26 am

    MY PROBLEM IS THAT MY RECTUM WALLS ARE STIFF AND WONT HOLD POOP SO I HAVE ABOUT A TWO MINIT WINDOW 2 FIND A RESTROOM AND PRAY THERE ARE MORE THAN ONE STALL. SO IM SURE MINE ISNT AS HORRIBLE AS YOU BUT I CAN RELATE 2 THE RESTROOM PHOBIA.I HAVE HAD HEMMOROIDS THAT ALL STARTED MINE HAD SURGERY THEN HAD 2 HAVE A SPHINCTORECTOMY THEN HAD RECTACEAL, THEN A PROLAPSE RECTUM SURGERY NOW THIS HAS ALL BEEN SINCE 94 SO IVE BEEN DEALING WITH THIS WHOLE ISSUE FOR SO LONG IM JUST TIRED OF IT.I APPRECIATE YOU EMAILING ME BACK IM SCARED 2 BUT ALSO NOT TOO. IM JUST WORRIED ILL HAVE TO HAVE THE PERMANENT ONE THEN I WOULD GO INTO A WORSE DEPRESSION DONT WANT THAT.

    [Reply]

    avatar

    Beth Reply:

    Cindy -
    I had the permanent ileostomy surgery in Oct. ’09. I went in for the jpouch, but am very very happy with what I have. With the jpouch there is still the risk of accidents, and especially if you have rectal area problems, that urgency probably won’t be solved by a jpouch. Having the permanent ileostomy is SO much easier to deal with. Instead of rushing to the bathroom, begging store clerks to let me use their secret bathrooms, or worse, having an accident, I can empty the bag pretty much at my leisure. You don’t smell bad, the only time there is any smell is when you empty the bag into the toilet, but even if you were squatting the old way, you’d still have a stink, right? And it doesn’t smell nearly as bad as traditional poo. Honestly, it is AMAZING how much of a difference this surgery has made in my life. I was diagnosed with Crohn’s back in ’94, so I’ve had daily pain from then up until I came to after surgery. Granted there was pain after surgery, but that was FROM the surgery itself, no actual disease pain. I was really bad off, so it’s taken me a lot longer to recover than most people, but I’m getting there, and it is such a relief to not have that constant worry of where’s the closest bathroom!

    [Reply]

  10. avatar

    mark says:

    August 3rd, 2008 at 6:19 am

    Hi,

    There are so many people out there living happy and healthy with an ostomy. I mean look at Chelsea, just 17 yrs old, sick all her childhood and now she is happy with a perm ileo:

    http://ucstory.wordpress.com/2008/06/07/another-inspirational-story/

    I know of many others who have found great happiness with the ostomy, so try not to fear this possible step too much – if it means your health and freedom back, you’d be suprised by how adaptable humans can be :)

    Also, if you ever to go perm ileo there are great sources like Shaz’s group here: http://www.ostomates.org/ you wouldn’t be alone while coping with the lifestyle change.

    [Reply]

  11. avatar

    cindy says:

    August 4th, 2008 at 6:30 am

    thaks again 4 answering my mail yall are so positive it helps as i am 48 and they say the younger you are the better 4 you 2 heal so im still unsure did you have 2 take steriods after surgery or b4 it.and do you have 2 take any med 4 life if so what if you dont mind me asking? thanks again cindy

    [Reply]

  12. avatar

    mark says:

    August 4th, 2008 at 5:22 pm

    Cindy,

    Yes, with any major surgery youth is probably in favor for healing, but 48 is still young :)

    Yes, I was on 20mg of pred. before the surgery, I tried to taper off but was too sick. So after the surgery they kept me on the pred for a few weeks and had me do a really slow taper. Now I’m steriod and medicine free. I do take immodium once or twice a day, and I do take metamucil to help me thicken it up. There are others who are 100% medicine free, but for me I need a little help slowing things down and thickening up. Maybe though as my pouch gets older I will be able to stop with my two medicine like treatments.

    [Reply]

  13. avatar

    Ken says:

    August 29th, 2008 at 5:06 pm

    Thanks for all the time spent on this VERY informative story.
    Ive suffered from UC on and off sense 1993. A very dormant period from 1994-2003. Ive been on predizone of and on for the last 5 years.I am scheduling my 1st surgery in early oct.
    I will DEFINATELY be refering to and using this sight!

    [Reply]

  14. avatar

    Joe says:

    September 2nd, 2008 at 12:30 am

    You guys are doing the community in whole a huge service and deserve to be commended for this. I received a J-Pouch in 2005, and had I known that there were sites like this, I know I would have been a big contributor.

    For those of you who are about to undergo the surgeries, rest assured that you will have your life back!

    [Reply]

  15. avatar

    Megan says:

    September 2nd, 2008 at 5:01 pm

    Hi Ken,

    Yes, living on/off prednisone is a good signal to consider surgery. I know with Mark it was a big thing to accept b/c he was in the cycle of prednisone, taper, get sick, prednisone, taper, get sick….and so it was easy to think “oh, he isn’t living on pred.” but in reality he was totally pred depedent and still not with any quality of life. You’ll do great with your Oct surgery, just do your best to keep a positive attitude, and be sure to read Carter’s page http://ucstory.wordpress.com/carters-surgery-photos/ His positive attitude about the whole surgery and stuff is really incredible. And keep in mind there are many excellent resources out there for you so be sure to utilize the jpouch community, we are fans of http://www.jpouch.org for anything ostomy/jpouch related.

    Joe,

    Thanks for sharing that you have your life back, it is so important to hear from people with jpouches how they are doing years after the surgery – you sound great!

    Megan

    [Reply]

  16. avatar

    mary says:

    September 27th, 2008 at 11:28 pm

    hey very interesting story, i don’t even know how i ended up at this site but i’m glad i did. i’m 35 and have had an illiostomey since i was 16 i had a severe case of chrones and am now just coming out of remission and never knew anybody else with a bag. in the early internet days i looked for groups and stuff but there wasn’t alot out there and what i did find was usually people much older than me with different concerns so its nice to find somthing that i can relate to. i have those blockages a few times a year and they suck. its usually my own fault tho. the last time i had one i was pregnant and was craving dried apricots i ate the whole container not my best idea. i usually just do the grape juice thing and curl up in a ball for 24 – 48 hrs while it works it’s self out. i also wanted to mention somthing else i learned while i was pregnant that waist wrap you use i found those bella belly bands are great at keeping your bag flat and from making crincly noises. any way i’d love to become part of the conversation thanks,and take care, mary

    [Reply]

  17. avatar

    midwifemuse says:

    October 16th, 2008 at 10:19 pm

    Thank you for writing this blog. My son has just had his ileostomy, two days ago, and reading your experiences is a huge help in enabling me to understand what he is going through and what else may be to come.

    [Reply]

  18. avatar

    keith says:

    October 29th, 2008 at 6:19 am

    mark,

    im getting an ileostomy done on the 30th of oct. ive had chrones for since i was 14 years old and now im 26. im very active in sports and actually played a little in college. im so in the dark about this??? ive never seen a stoma our ileostomy before but looking at your pics has been so helpful ! im scared nervious and just angry about all this becuse i think its gonna stop me from doin all the things i love to do . all i ever wanted was a family house and a good dog but with all this goin on i dont see this ever happning for me . it would be awsome if you could just let me know how you delt with all this . and from what the docs are saying to me is that mine cant be reversed ?? and ive never herd of the j bag before this web site . thanks for the pics
    - keith

    [Reply]

  19. avatar

    mark says:

    October 29th, 2008 at 4:53 pm

    Hi Keith,

    You have had a long journey with Chrons Disease (CD) at such a young age. The surgery should help relieve some of your pain. I had Ulcerative Colitis (UC) which is like CD, but UC only affects the large colon and rectum, whereas, CD can affect anything digestive from mouth to anus.

    You’ll want to get more accurate medical info on this and below I’ll give you some links, etc…but as far as I understand CD people don’t often get the jpouch like I have because the jpouch is created from the small intestine that in UC isn’t sick, whereas, with CD the small intesntine may also be sick – therefore, the jpouch wouldn’t work as well for CD. (sorry if that is confusing)

    It is more common for CD people to have a permanent ostomy, and then people like me with UC to have temporary ostomy then jpouch. You’ll want to find the right sources of support for CD and Ostomy, and I recommend the following pages for you:

    1) /www.healingwell.com/community/
    They have an OSTOMY and Chrons forum board, use these for support and find people who are dealing with same thing as you.

    2) http://www.uoaa.org/ United ostomy organization has an active forum for people living with ostomies but it won’t be people with just CD.

    3) On this page you’ll find great links to videos about living with an ostomy that you may want to watch…
    http://www.wrongdiagnosis.com/u/ulcerative_colitis/video.htm Be sure to watch the video on this page titled “Living with an Ostomy” it is a true story of a young woman about your age dealing with the same thing as you.

    To answer your question, I have dealt with all this through seeking, reaching out and asking for support like you are now. I used the online support groups (still do), my friends and family know my story, seen my photos, I just tried to make this best I could by not being embarrassed and doing what I could to help others like me. You know, if you ever need to tell your story, we’d be happy to share it on our blog – you’d be suprised how good it feels to get it off your chest.

    Most importantly, throughout the years I’ve also sought professional therapy to learn how to cope with chronic illness, fear, anger. You’ll need to learn to cope because you’ll have a better life if you can find ways to be positive not negative in this. You will need to find ways to make the best of the sitaution no matter how dark it seems at times – the goal is get your life back and to be healthy and young.

    Keep us posted!
    Mark

    [Reply]

  20. avatar

    Shirley St.John says:

    November 6th, 2008 at 7:29 pm

    My son has been going thru all these familiar problems for over a year now. He has finally decided his best bet is to go for the surgery. He plans on discussing this with his Doctor at M.G.H. in Boston very soon and hopes to have the surgery done just after the first of the year. He is married with three small children (1- 8 yr. old daughter and twins 5 yrs. old- boy & girl). His wife cannot take any more time off from work, so he has asked me to stay with him to assist him in the hospital and at home, until he is comfortable doing things himself. He is 44 yrs old and is trying to plan this so they have enough money to live on while he is out of work for an extended time. His boss has told him he will help as much as possible, so this will take some of the pressure off. This is a wonderful site for someone like me to know what will be expected of me in helping my son. I have five other children and this son is one of twins. I, myself am about to turn 76 yrs of age in November, so this will be a challenge. I’m saying my prayers that my health holds out in order for me to assist my son as long as possible. Thanks for all your wonderful info on this subject. Sincerely, Shirley

    [Reply]

  21. avatar

    Megan says:

    November 6th, 2008 at 10:00 pm

    Hi Shirley,

    Your family is being challenged now, but you are all so lucky that you have the ability to support each other through this.

    We planned Mark’s surgery for about 9 months before we did it because we needed it to work with my schedule and his, we had to get our finances settled to have him out of work that long, etc…It was a really difficult time, but between support from family and planning as best we could, we made it through and did well.

    You will definately be invaluable to your son during his recovery. More than the physical help, he’ll just need the emotional support from you and his wife. I know with Mark, his Mom and myself were a huge part of helping him heal. Also, we were so good and supporting each other. You make sure that you and the wife give each other support to get through this. We always said his disease was “our family disease” because it took so many people to support the healing process.

    There are WONDERFUL resources for making this transition. Especially the wonderful http://www.jpouch.org support forum. It will likely be your lifeline through the journey b/c there you can ask and learn all the stuff you need to manuevre the changes. Most importantly, it is crucial to realize you and your family ARE NOT ALONE in the difficulties you face. Use your resources like our site or jpouch.org and get the support needed to go through the journey.

    Take care and feel free to write us if you need anything, our email is mdhilton@gmail.com

    Megan

    [Reply]

  22. avatar

    courtney says:

    December 4th, 2008 at 5:42 pm

    What a great documentary. I have had UC for 2 years now and I am dealing with flare ups that cannot be controlled unless I use steroids. I have also been on Imuran which is an immunosupressant drug for 2 years. I have started my research into the total colectomy surgery. I am a registered nurse/supervisor, so I have taken care of a lot of colon surgery patients, but when you deal with your self; you feel very uneducated. I appreciate the step-by step journal that you have placed on the internet. I hope that you are doing well, I a just want to say that I commend your strenght and dedication.

    [Reply]

  23. avatar

    Matt W. says:

    April 1st, 2009 at 3:07 pm

    Mark,
    I first had my colon removed in Sept. 2001 and reconnected thru a J=pouch in Jan. 2002. I’m a little older than you but I don’t think that’s a problem. my questions are these: do you have a diet you follow? foods okay to eat? and foods to stay away from? What about sleeping? How do you control diahrrea? I have not had a full night’s sleep in 7 years. I’m constantly waking up 3 or 4 times to go to the bathroom. This is the first site I’ve visited that actually showed the stoma and appliance. I applaud you for your openness and hope you may have comments on my questions.

    Thanks and good luck. Matt

    [Reply]

  24. avatar

    Chaz & Lori Burton says:

    April 1st, 2009 at 8:52 pm

    Mark & Megan ~ You know, I just had my step one surgery last week & I’m trying to figure out how to wear my clothes in the upcoming weeks. Mine is about in the same location as yours….except I have more of a gut. I was looking at the pics of your wrap. My question is….if the bag is sideways how can it collect the waist? I wear my pants low already, so I don’t think I want to do the underwear with the built in pocket…..because I don’t want them up that high. I’m just trying to figure things out. Any advice? Thanks, Chaz http://www.mylifewithcrohns.wordpress.com

    [Reply]

  25. avatar

    Mark says:

    April 2nd, 2009 at 6:52 am

    Chaz, The Phoenix belt and how it is sideways worked fine for me, it just had to be emptied sooner than when I was wearing the bag forward. I wore a two piece so it was easy to keep my flange in place and just unsnap my bag and put it straight or sideways. I actually only wore the belt a couple of times and then found for me it wasn’t needed. See, I move around alot with my work (contractor/carpenter) and the belt would ride up on me. For comfort in your clothes you can try wearing underwear that are high waisted and trap the bag under the underwear, that is commonly done I think.

    But for me I ultimately got a point of wearing my clothes completely normal and just tucking the end of the bag into my pants and weairing an undershirt and shirt over to help hide the bag underneath. If you need more advice you can always post over at http://www.jpouch.org too.

    [Reply]

  26. avatar

    Mark says:

    April 2nd, 2009 at 7:02 am

    Hi Matt, Hmmm….3-4 times a night would really ruin sleep. I am up atleast once a night and sometimes twice, but not more than that. On the homepage of http://www.jpouch.org there is a link to “Dietary Guidelines” and you should read that help you see about food. Also, you may want to post your story from here on http://www.jpouch.org and see if others there have any feedback for you. My number of BMs is related to the food I eat, so the better I eat (home cooked balanced foods, or quality restaurant food) I have less BMs. But if I am sloppy with my diet and have lots of high fats, sugars, processed foods, my BMs increase. I don’t stay away from foods but I try to eat organic and well balanced as much as possible.

    I take metumicial right now once a day and that helps thicken up things. I used to take it twice a day but now once a day. And if my BMs increase, I will use immodium which takes some time but it does help with slowing down number of BMs. You might want to read this thread on having high night BMs and how to use immodium, it was SO helpful for me to read and understand –
    http://jpouch.org/eve/forums/a/tpc/f/9151071921/m/5601080242r=5601080242#5601080242

    Hope this helps,
    Mark

    [Reply]

  27. avatar

    Mallory Tift says:

    June 23rd, 2009 at 10:24 am

    Thanks so much for your willingness to post such an in-depth documentary of the surgery process. I do not have UC or IBD, but was born with a deformed large intestine which was twice the length it should have been and ultimately had to have a total colectomy (with temporary loop ileostomy) and J-pouch surgery. I wish I had taken more photos during the ileostomy stage of the procedure, but I never was comfortable enough with it…I wound up having to keep it for a year and a half because I’ve had every surgical complication in the book, but never managed to get past the “gross” factor. I was happy to see your demo of the ostomy belt, as I had one of those too (identical to yours, actually!), and it was the only thing that made it possible for me to do even a fraction of things I was used to.

    [Reply]

  28. avatar

    Sergio says:

    November 22nd, 2009 at 3:38 pm

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    [Reply]

  29. avatar

    Hi All ! says:

    June 24th, 2010 at 4:15 am

    My son had 1st surgery last Friday. Seems to be lots of complications. He has had to have a tube into his stomach because infection is giving him hiccups and lots of gas. Any other complications we can be expecting? Any other experiences with this ? He is scared he is going to die.

    Thanks for your input, and for having a place to ask questions.

    Karen

    [Reply]

    avatar

    Mallory Reply:

    Karen,
    I had my first surgery in July of 2007, and my last takedown in December 2008. I have had loads of infections–all just fluke things, it seems like–and have had to have tubes in my stomach/abdomen as well. After one procedure, my stomach expanded to the point that it collapsed my lungs and almost ruptured, which indeed would have been fatal, but the NG tube that was run into my stomach kept everything cleaned out and healthy while I healed. For the most part, though, if infections are caught early and treatment is begun–which sounds like your son’s case–there should be no dangerous long-term effects. If you saw me now, aside from my scarring, you’d never know what I’ve been through medically because I look totally normal and feel like a normal college student. Hopefully your son will be able to say the same thing!
    Good luck to you.

    [Reply]

    avatar

    radhika Reply:

    I have ulcerative colitis and for the last year and few months my disease has not been resposive to medicatons and doctors are saying surgery is the last step. I am so afraid to do this surgery , I feel so depressed now . I can’t imagine how I would feel afterwards . Please ne honest …compared to the uc symptoms are you better off with the surgery?

    [Reply]

    avatar

    Ed Foster Reply:

    Have a look at http://www.health-science-spirit.com. Apparently ulcerative colitis is caused by pleomorphic microbes. You will have a discharge after the baking soda, then you will immediately feel better. the baking soda routine must be used for 5 days at least. The fungus lifecycle is 3-4 days. I read elsewhere 5 days on, followed by 5 days off, repeat 5 times.It looks like tea tree and cinnamon oil is the best for purifying the blood.

  30. avatar

    Elizabeth says:

    June 29th, 2010 at 6:35 pm

    I just wanted to let you know how much this has helped me! I am now 6 weeks out from my first surgery (I’m having a 2 step surgery) and I find myself coming back and getting information over and over again. I cannot tell you how many times I read this before actually having my surgery. It really made me more comfortable and made me familiar with some of the terms I would hear and things I would see before hand which really helped. Thank you again!!

    [Reply]

  31. avatar

    Gabrielle says:

    August 9th, 2010 at 9:20 pm

    I went from being diagnosed with UC to having a total emergent colectomy in less than two months. The doctors claimed I had UC for years but was asymptomatic. Still the whole situation hit me like a bus. One night during my initial hospital visit I spiked a fever because of a perforation in my large intestine that was causing me to go septic… The next day I woke up with an ileostomy; an option that hadn’t even been discussed yet. I’m 18. I’ve never been sick prior to this. I’ve had my ileostomy for almost a year now and it’s not getting any easier to deal with physically and emotionally. I’ve already had my J-Pouch surgery and am waiting on the take down… but I’m also about to enter my freshman year of college. I’m scared and don’t have any clue what to do. I cannot even fathom living with my ileostomy in college but I also can’t fathom trying to survive the first few months after my take down while having to attend long lecture classes. Any advice on what I should do? I’m the only person under 50 that I know who even has an ileostomy/colostomy… 

    [Reply]

  32. avatar

    Mallory says:

    August 10th, 2010 at 7:24 am

    Gabrielle–
    I am 24 years old and also a college student. I began all of my surgeries in college, which is why it is taking me so long to get my degree (I’ve had to drop to 12 credits per semester for a couple years in a row), but it is not really as tough as it sounds. I, too, wound up with an ileostomy COMPLETELY unexpectedly after what was supposed to be my one and only surgery (I’ve had 5 since then). I kept the ileostomy for a year and a half while going to school, and although I never adjusted to it either, going to classes was not made any tougher because of it.

    I would recommend taking anti-gas pills (like Gas-X, which is what I usually take) so the stoma isn’t as “loud” during class…and, if possible, discuss the possibility of getting a single dorm room. Even though you are a freshman, most schools will honor that request if it is for medical reasons, so just be honest with the authorities at your college. I don’t know how you feel about telling people about your ileo (I was horrified at the idea of telling anyone I had it, until long after my takedown–and everyone was really understanding), but if you are comfortable discussing it, all the better. Also, post-takedown, you may want to alert your professors to the fact that you have a medical condition that may require you to step out of class once in awhile, if it is a long class. They probably won’t even question that. Actually, at least at the college I go to, people get up during lectures to go to the bathroom all the time, without any explanation, and no one really notices.

    Lastly, I’ve found that trying to be really involved in campus life helped get my mind off my ileo–I couldn’t forget it, of course, but being around other people at least gave me something else to focus on.

    Hope this helps! Feel free to contact me by e-mail, if you’d like: mal.tift@rocky.edu

    [Reply]

  33. avatar

    Chris says:

    September 7th, 2010 at 12:06 pm

    Hi I was told I had UC when I was 15 years old and at that time my UC was so bad I had to have an emergency surgery.  I am now 34 years old and since this all began I have had J-POUCH and I did very well with that for 15 years.  I got really sick in 2006 and was told after exploratory surgery that my J-POUCH had worn out.  At that time i was living in the rest room.  I only had about 4 weeks to wrap my mind around having an illiostomy.  It is now 2010 and I am so glad I did have to surgery.  In fact I wish I would have had it years ago.  My quality of life has improved by 100% which is the goal of an illiostomy.  I found being up front with every one about my illiostomy made it a lot easier to cope with.  I did not want stories to get started so i nipped them in the butt before they started.  I tried to educate people on my condition and answer any questions any one had so they new how to act and cope with me as i was learning to cope with an illiostomy.  All the posts that i have read here have been great thank you every one.  I wish when i was told i had UC there was this much support that would have defiantly made things a lot easier to cope with.  The worst people are the people with the lack of facts about UC and CD.  So I try to educate as much as possible.  Good luck to every one that is new to this illness just remember that your quality of life will improve by 100%.  You will have ups and downs but if you put people around you that understand and give you support and assurance that every thing will be ok every thing goes a lot smoother.

    [Reply]

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  35. avatar

    sara says:

    March 28th, 2011 at 11:07 pm

    Hi,
    Thank you all for sharing your stories, esp you Mark. I hope everyone’s doing well.
    I had an incomplete spinal cord injury in 2005 and was left with bowel incontinence and constant diarrhea. I’ve been very limited in what I can do, completely switched my life around to have an “indoor” life.
    I haven’t had the strength to consider any ostomy bags, and have so far said I’d rather just be w/o a bag that smells and is always attached to you than to have a very limited life but with nothing attached to me.
    I’m wondering what a “permanent” ostomy is, and what it looks like. Any suggestions of a good site to see a picture & learn more? Thanks…!

    [Reply]

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  37. avatar

    Susan C says:

    July 1st, 2011 at 6:10 pm

    Hi! I just had my ileostomy done and I’m just waiting for my J-pouch to heal for the second surgery. I am having a problem with my ileostomy bag. It keeps leaking on me. It could be because my skin around the stoma is a little irritated and red and the stool keeps getting under the wafer and causing the leakage. I tried using the ring around the stoma but still leaks. I have also tried the stoma powder on the reddened area before applying the bag. It still leaks at the end of the day. I am really getting frustrated about this. Does anyone have any advice for me please? :(

    [Reply]

    avatar

    Rita Reply:

    Hi Susan C,

    I was having the same problem. before the home health casre nurse was having me use the skin barrier wipes and everytime I had leaks. So I finally tried to remember what the hospital had use which I had no leaks and lasted for 5 days. They used the spray skin barrier. I lay down and spray so it gets the whole area and doesn’t just run down. The major thing is to make sure it is completely dry before you put on your waffer. I have a card I use for a fan to help it dry faster. My skin has became a little irritated because I was cutting the wrong size for my stoma. Check your size with the white charts. I also use the stoma powder but again I lay down. I do use a ring barrier to. My last up to seven days now before I was having to change them about 4 to 5 times in one day which was no fun and hard on the skin.
    Hopwe this helps.

    [Reply]

    avatar

    radhika Reply:

    I am suppose to have the surgery soon. I am so afraid . I really am depressed now . I feel like there are so many risks with this surgery especially as a female. Do you feel it is best to the surgery ??

    [Reply]

  38. avatar

    Greta says:

    August 7th, 2011 at 1:21 pm

    Susan,
    I had my first surgery on May 6th, 2011. I too had problems with the leaking. I had to change to a convex style wafer. I use the skin barrier ring first then the convex wafer on top of that. I had to also go to a tighter fitting size. Try re-measuring your stoma to get as tight of a fit as possible. I got so frustrated until I went back to the ostomy nurse who helped me with the above plan. It worked for me. Good luck!

    [Reply]

  39. avatar

    Ed Foster says:

    March 2nd, 2012 at 1:14 pm

    I had my colon and asshole ripped out in dec. 2011, total proctolectomy with permanent ileostomy. I had no choice, it was emergency surgery, my ass was shooting dark blood uncontrolably. If you have ulcerative colitis and dont need emergency surgery, go to http://www.health-science-spirit.com Apparently autoimune disease is caused by pleomorphic microbes. And I still have to kill these bastards off after surgery.Also anyone having major surgery will have soul loss(part of you leaves your body due to pain,so the body can survive) and the soul part needs to be returned.A classical 5 element accupuncturist should be able to find and return it(him/her).

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