I just got back from the Cleveland Clinic, I took a trip up there hoping to have a re-do of my j-pouch in May. Turns out I have Crohn’s Disease and a re-do isn’t really an option. The doctor suggests taking my j-pouch totally out and putting in a permanent ileostomy.

I have had a recto vagina fistula that has gotten progressively worse over the past few years, which is why I ended up at the Cleveland Clinic. When the doctor looked at the pouch I have many strictures including 2 in my small bowel, which apparently combined with the fistula means Crohn’s Disease.

This is devastating for me. I was already dreading the 3 month period of having an ileostomy while waiting for my re-do to heal. I wasn’t prepared to hear this news at all. I am 32 years old, had my pouch for 16 years now – lots of problems along the way, but just never prepared myself for this. I have a wonderful husband (we celebrate our 10 year anniversary in May) and mom that is so very supportive.

I am a basket case right now. I can’t talk about it without getting emotional. I have so many questions I don’t even know where to start… I am really just looking for some support from people that have been through something similar and now live a normal life with an ileostomy. Tell me your stories about your pouch and what went wrong, what the surgery was like to remove the pouch and add the end ileostomy. The doctor is saying removing the pouch is a difficult procedure and not just anyone can do that, so wondering where you had your surgery done, by who and what your experience was. Please share your experience – I think this will help me get through mine a little better knowing others have been through it and it isn’t the end of the world.

This message has been edited. Last edited by: TXBigBird,

While I know this wasn't the news you wanted, you can be young, have an ostomy and live a full life - I know because I'm doing it.

I don't have much time just now, so will post more details later, but wanted to give you a quick run down on me and give you some hope (I hope)

I was 30 when I had my pouch disconnected and perm ileo created and 33 when the pouch came out. I have been 100% healthy since, do and eat everything I want, take no drugs, and pretty much live an ordinary normal life. The biggest thing I've done with my ostomy, and something I never thought I'd be able to do, was have a baby in Jan 06. We're now trying for #2. Life couldn't be more normal.

I'm off to yoga, but will post more details later.

I understand what you're going through. I've had my j-pouch for 15 years. I had four good years with the j-pouch. Then I developed a rectal-vaginal fistula and have been trying for eleven years to close the fistula and save my j-pouch. It's been really rough going. Now it's time for me to get a permanent ileostomy. I'm scheduled to have mine done on July 19th by Dr. Juan Nogueras at the Cleveland Clinic in Weston, FL.

It took me so long to come to this decision. I'm still not happy about it but I have no choice. I know things are going to be so much better after I get the permanent ileostomy. I'll be able to eat most anything again and won't have to worry about which foods are going to make my bottom burn and my skin raw. I won't leak stool anymore and will be able to sleep again. I won't have to get up two to three times a night to clean myself up. I can't even imagine how that will be because I've been so miserable for such a long time.

Decisions like these are extremely difficult and everyone has different ways that they cope. I held on for a long, long time hoping things would get all better. It's a process that we all have to see through. Now there's no question that I need to remove the j-pouch; I've tried everything. I'm absolutely ready now; in fact, I can't wait

Caty

Jill & Caty, thanks for replying. I have some questions…

Jill, why did you have to have your pouch disconnected? What made them decide to take the pouch out 3 years later? Where & what doctor did you have the surgery for each part of those surgeries? Do you have Crohn’s?

Also, on the baby, how was that with the ileostomy? Were you able to give birth naturally? Did it impact your own body much while you were pregnant?

Sounds like you feel you did the right thing and are happy with it? Did you try for very long to make things right with your pouch (you didn’t mention why you had to go to the perm ileo)…

Caty, wow, sounds like you have been through so much – I can’t imagine eleven years with the fistula, although its been about 6 for me, but it started so small with just some gas passing though it (which at the time was devastating, in retrospect it could have been worse!) What all did you try to fix your fistula? Do you have Crohn’s? What about strictures?

I appreciate you both sharing your stories with me, really helps to know others have been in my shows! Hope to hear some other stories also.

When I was making the decision to have surgery, I was faced with tough guesses. They diagnosed me with ulcerative colitis, but one test came back Crohn's positive. It was discounted by the doctors as a late-night resident error on the reading of a CT scan. Still, they could not completely rule it out.

The chance of having Crohn's in a UC patient is between 15 and 20%. For me, it was probably closer to 33%. I was afraid of Crohn's complications with a J-Pouch. So I chose to have a permanent ileostomy. It was the best decision I could have made. 9 months later, I tested positive for Crohn's on a blood test, and am starting to show extra-intestinal symptoms of the disease.

I'm 27. I completed graduate school right before my surgery. I wanted to be able to have a career, and in my field that means being able to sit through things and go to the bathroom when things are over. I didn't have that freedom--and could barely function--before my surgery. Now I have that freedom.

I never had a loop ileostomy, so I don't know if they're harder to manage or not. But I've heard that they are. I have a end ileostomy. My stoma protrudes about an inch. I can wear the flat barriers with paste. I get about 6 days wear time on average. My output is paste-like. I empty around 4 times per day.

In short, it beats the alternative of constant pain, being chained to a toilet, and possible death. It took a month or two to get used to, but I can do almost anything I could do before I was ill. I feel free again, and that's special after two years of severe illness.

I've never gone from a j pouch to an ileo but I have had my ileo for 31 years now due to UC (I was 10 when I had surgery - I'm 40 years old now).

While the thought of living with a bag can be devastating for most people, the reality is usually quite different. There's nothing I can't do because of my ostomy (except wear a bikini - but then this body was never meant for a bikini). I go swimming regularly in summer, have been rock climbing, ridden camels and elephants, travelled extensively overseas, etc all without a problem.

Remember, your ostomy won't stop you from doing anything you want to do - only your mind will.

Good luck.

Shaz
http://www.ostomates.org

I had my pouch disconnected due to chronic pouchitis. I wanted the pouch out but the surgeon insisted a disconnect would work...it didn't. I had my pouch 3 1/2 years at the time of disconnect.

After 18 months of continued issues with the disconnected pouch, I decided I wanted it out. I had to go to 4 different surgeons to find one who agreed with me...the other 3 wanted to do mucosectomy or other things to "save the pouch" but I didn't want it saved at that point.

My disconnect was done by my original surgeon Dr. Ronald Bleday at the Brigham in Boston. I did not go to him for the pouch removal and was not happy with him at all. I had my pouch removed by Dr Patricia Roberts at the Lahey CLinic in Burlington, MA and cannot say enough about her - she is fabulous! I do not have a diagnosis of Chron's, all tests and pathology show UC, but I think someday we'll find out I do have Chron's...just a gut feeling.

On the baby front, I did need to do IVF to get pregnant, but it worked first try. The effect on my ileo was non-existant, except that I normally use convex wafers and as my belly grew I switched to flat ones. Back to convex after delivery. I did have a major bowel obstruction that lasted 5-6 weeks in my fifth month. I was on a liquid diet and in the hospital about 15 days. However, they were able to catheterize the ileo and hold the obstruction open to get me through. Dr Peter Mowschenson (surgeon) at the Beth Israel in Boston took care of me during my pregnancy (Lahey doesn't do obstetrics so Dr Roberts couldn't care for me). Before and after that a very normal pregnancy.

I delivered by c-section after a consult with my high risk OB. He was willing to let me try a natural delivery but told me that with a planned c-section, he could plan and take precautions to work around and protect my GI system. IF I tried a natural delivery and needed an emergency c-section, he wouldn't have time to do that. Since my Mom needed 3 c-sections without surgical issues, I decided to go with the planned c-section. I delivered a 7lb 10oz baby at 37 1/2 weeks. He was delivered early intentionally so that I wouldn't go into labor. He was perfectly healthy and still is...

Shaz is 100% right when she says the ileo isn't what keeps people from doing things - the mind is...I just told myself from day one that the ileo was what would give me my life back and it has been...I've been kayaking, swimming (a lot), hiking, etc...with no problems and better yet, without a second thought about my bowels!

I absolutely did the right thing. I was tired of feeling like an 80 year old when I was 30. I was tired of not being able to go to the movies and dinner with friends because I was too tired to be out past 9pm. I was tired of living around my pouch instead of with it. The ileo gave me back what was most important to me - living my life on my terms.

I PM you my phone number if you want to talk...

I'll ditto everything that others have said about life with a perminent ileostomy.

I had my j-pouch for 8 years and exhausted every possible fix for it which included 8 major abdominal operations in as many years. (the 8th being my pouch removal) I had the opposite problem to most people, I couldn't empty my j-pouch which led to bacterial overgrowth and constant pouchitis, bowel obstructions, fissures, abscesses, ulcers..... you name it! I had my j-pouch removed just over 3 years ago and I can tell you now that I am just soooo glad to be rid of all those horrible "butt" issues!

Unfortunately I am now going through tests to see if I have Crohns because I have had some ulcers appear on Wee Willie (my end ileostomy) and that combined with all the other "extra-intestinal" problems that I have experienced over the years is making it look more and more likely that my original (30 year old) diagnosis of UC was wrong.

My only regret about getting rid of the j-pouch is that I didn't do it sooner. I wasted a lot of years of bad health and could have saved myself a lot of surgery and pain had I got rid of it as soon as it stopped functioning properly, but then hindsight is 20/20

Good luck. We are all here to help you through this so come here with any other questions and we will do whatever we can to support you.

Shell

'Just another voice from the end ileostomy world...My husband Paul is 32 and just had his j-pouch removed completely and an end ileostomy done. He hates typing, so I'll pretty much tell his story...
The removal was done just this Jan. 4th by Dr. Paul Vignati at Hartford Hospital in CT. If you do a search on his name, you'll find a number of us from CT singing his praises. We can't say enough about his skill, patience, caring, understanding, and empathy. He was awesome about removing the pouch, even though he created it. Unlike Jill's difficult experience trying to convince the surgeons to change over to an end ileostomy, Dr. Vignati actually was humble enough to say he had no options left to give Paul for improved quality of life. That helped so much, knowing that medically it was a wise decision.
Paul really didn't even have his pouch very long, but like JillM, had to get rid of it as a result of chronic pouchitis which led to pouch failure. He says his only regret, as others have said, is that he didn't do it right away. He had been so sick, 117 lbs, anemic, bleeding constantly, just a very unhealthy, sickened body. You wouldn't believe the difference in him just since his surgery. We're travelling, running around after our kids, he's back to working full time--at a very physical job, and not a person would be able to tell that he had an ostomy by looking at him. Even those that know he has it still can't figure out which side it's on!! And an end ileostomy truly is so much better to deal with than the loop.
He's up to 140 lbs, active, lifting weights, eating like a trooper. With the pouch, he was down to eating just boiled chicken and broth, the butt burn, bleeding and cramping were so bad. The life change has been awesome, and speaking about it from the viewpoint of a spouse, it's like an elephant has left the room. His pouch, UC, diarrhea, and painful symptoms were all we ever thought about, talked about, prayed about. It was like it consumed me... and him, obviously. Our life is back. I had forgotten how easy going, jovial and funny Paul was before he got UC. Now that he feels good, it's like it was when we first got married. We're concentrating our energies on our relationship and our children instead of a horribly interfering disease.
I hope all of these posts can give you some hope. If we hadn't found this site and people like Jill and Shell, Paul would probably still be suffering. Best of luck; feel free to PM with any other questions you have.
Betsy & Paul

My story is a little different in that I only had my J-pouch for 10 days. I had my temp illeo and was recovering from step 1 when 10 days after surgery my pouch perforated and I went into severe septic shock. They had to open me back up that night in emergency surgery and found that my pouch has gone ischemic (loss of blood flow) and the lining had started to go necrotic. They had to remove my pouch and create an end illeo to save my life that night. It has been three years since this happened and I did have a stoma revision almost two years ago to redo my end illeo. Other than that everything is great. I have been walking half marathons with no trouble (I can't now, but that is due to hip problems unrelated to this surgery) and I eat just about anything I want. Yeah, I occasionally have leaks (had a blowout last night actually as I didn't wake up in time to empty due to a terrible headache). All in all life has returned to normal.

I don't know of anyone who has not had the "I have to wear a BAG!?" reaction to having an ileostomy. They sneer and say "BAG" with spit in their voice and absolute horror at the thought! It can be a hard adjustment to make at first. A new ileostomy is painful- your abdomen is anyway (the stoma itself doesn't have any sensation), and it takes time to adjust to having a stoma, learning how to care for it, managing appliance leaks, figuring out which appliance works best for you... and so on. Like anything else this major, it is a learning and healing process- both emotionally and physically.

So now that I've probably made you cry, lemme tell you that like others have said, there is nothing I can't do with my permanent ileostomy. I just got home from the gym, where I went swimming and sat in a jacuzzi for the first time since my cancer recovery.

I go to the beach, swim in the ocean, lift weights, fight in medieval armor, work a full time job, play quidditch, and would be practicing Yoga if I would get off my duff and do it. The only reason I have not added "have mad and passionate sex" to the above list is because I'm not currently sexually active. Honestly, you can have a healthy, happy, active, sexy, gorgeous, pain-free life with an ileostomy.

Ask questions, vent, cry, scream, make lists of things you're worried about and post them here so we can help.

-Rae

Thanks so much for all of your words of advice. Just knowing what others have gone through or can do makes me know I will get though this.

I think for me fear of the unknown is overwhelming. Also, when I had my original ileostomy for the j-pouch surgery I was 16, so you know we are all full of hormones at 16.

So here are some of my fears / concerns - hope you can help me maybe not be so worried about these things!

I work as a professional - I am so worried about noises, leakage, someone knowing or finding out... Tell me your stories about how you "hide" the noises in meetings or how you had leakage and dealt with it...

What about the bathroom - does it make noise when you empty it? How long does it take to empty? Does it stink bad? How do you "hide" that?

Did you buy new clothes? Are there certain clothes you can't wear that you had before the surgery?

Do you wear a swim suit? If so what kind, how do you find one to hide the ileostomy?

When did you start feeling comfortable and that its a "normal" part of your life? Right now I can't imagine telling my friends or anyone at work...does that pass?

For those of you that have had a baby with an ileostomy, did you have a lot of problems or was it relatively normal?

I know hearing how you all ended up with your ileostomy helped me, so I am willing to bet this will help calm some of my fears, so THANK YOU for your responses

I work as a professional - I am so worried about noises, leakage, someone knowing or finding out... Tell me your stories about how you "hide" the noises in meetings or how you had leakage and dealt with it...

I worked as Asst Director of Human Resources for Executive Education at the Harvard Business School before I had my son - worked directly with the Executive Director and all senior staff. I never worried about noise. On the odd occassion a sound would happen in a meeting, I wouldn't blink and so neither would anyone else. The noise isn't much different than if a regular person was hungry or having an off day. BTW, I also told everyone I worked with what my situation was...I'm very open about it.

What about the bathroom - does it make noise when you empty it? How long does it take to empty? Does it stink bad? How do you "hide" that?

Emptying takes me less than a minute usually...I'm really low key about it. I use tp to clean the end of the bag, but I know some people rinse the tail every time they empty. Noise emptying can be minimized by making sure the liquid/paste doesn't hit water first. It can smell, but you can use M9 drops in the bag to reduce the odor and M9 spray which is fabulous after you are done.

Did you buy new clothes? Are there certain clothes you can't wear that you had before the surgery?

After the first few weeks when I wore mostly sweats because I was still sore from surgery, I wear all of my same clothes - jeans, capris, shorts, etc...I even wore a column dress to a wedding the first year I had my ostomy.

Do you wear a swim suit? If so what kind, how do you find one to hide the ileostomy?

Lands End and LLBean make great two piece suits that hide the ostomy well - tankinis, as well as mix and match 2 pieces.

When did you start feeling comfortable and that its a "normal" part of your life? Right now I can't imagine telling my friends or anyone at work...does that pass?

I told everyone right up front. I just figured if my friends were my friends it wouldn't be a big deal and it never was. I also told everyone I work with, but I had very close working relationships with everyone there. I'm pretty open about it though.

As for feeling normal about it, probably 6 months or so. During the first 6 months of adjusting, I made my hubby stay in the bathroom for bag changes because I was nervous, I would constantly feel my bag to check and see if I needed to empty, things like that. I don't do any of that any more.

For those of you that have had a baby with an ileostomy, did you have a lot of problems or was it relatively normal?

I already posted about my baby experience. I'm going to have an embryo transfer on Saturday to try for #2 so in spite of the obstruction issue (which, believe me was no fun at the time) I'm willing to try it again.

Ok, its not always bad to have a permannet(sp?) I have had one since i was about 4 and im 16 now, i have to deal with it for the rest of my teenage and adult life. Dont feel bad. Trust me when I say this, it could be worse if you were my age, i get a little bit of crap from people pokin fun about it. i've ended up taking care of a situation myself because of it. So just dont worry, its not that bad. It may seem like it.. but it can be something that defines you.. I will say though, anyone is brave that has one, because some of the test they do are VERY uncomfortable actually most of them =[. Don't worry about it though, things will start out slow and then get better