I have been dealing with UC for a little over 10 years. Was diagnosed when I was 20. I have bounced around with every medication possible for UC and some keep me on the fence from not feeling terrible but not feeling great. On a good day I might have 3-4 BMs a day but still most of them come with quite a bit of urgency. Then I also have my bad days where the BMs could range from 5-12. I am at the stage now where I am back on Remicade and I also take 15 mg of Prednisone a day and like a said keeps me on the fence but still have the urgency factor when I need to go. I also take 2-4 pills of Imodium a day just to get through the day.

Its looking more and more like surgery might be my only option at this point but I am terrified of being stuck with a colostomy bag for the rest of my life. I am not trying to paint a bad picture about colostomy bags, I just live an active lifestyle and just don't want that for my life right now. My dad was diagnosed with colon cancer in March of 17 and had his colon removed and has a colostomy bag but I feel as though he is at a more comfortable stage in his life to have one. (He also had UC) I have been doing a lot of research on the J-pouch surgery and I see a lot of positives and negatives with it. I feel like with my luck, I will develop pouchitis and be force to have a colostomy bag (which is my worst fear at the moment to proceed with the J-pouch surgery).

So I guess I am just looking for some advice/experience with the J-pouch surgery. The biggest thing I want back in my life is the ability to control my BMs. The urgency is a consent worry. I find myself excluding myself from joining friends going to events/road trips due to the fact that I know I might have an episode where I need to go and no where to go.

Another factor that would be nice about the J-pouch is that it sounds like you can return to eating normal again? There are a lot of foods/drinks that we all have to avoid and it sounds like from what I read that you might get some of this back with the J-pouch surgery? I also workout pretty regularly and would like to gain muscle weight but with UC its very hard to pack on the weight when the more you eat the worse you will feel or more BMs that you will have. 

I also have been diagnosed with PSC of the liver. Wondering if that plays a factor into the J-pouch surgery at all? My dad also had PSC of the liver and has had two liver transplants to correct it. 

I am just reaching out for any experience bad or good and get some advice. Thank you for taking the time to read this and respond. You can only learn so much by talking to doctors. Real life experiences are much more helpful.  

Original Post

I wish I could tell you that it is an easy choice and you should absolutely go with a j-pouch. But, yes there are potential complications, including not being able to construct the j-pouch. 

Also, the first 3-6 months can be very trying, and many question their decision to go forward with surgery. But, in the end, the satisfaction rate is high, 80-98%, depending on the center doing the research. The main thing to remember is that there is no surgical option (j-pouch, ileostomy, or continent ileostomy) that is perfect. They all have their issues. You will never have “normal” bowel function with a j-pouch, but after you have adapted, urgency is not an issue, even though frequency may be high (4-8/day). 

So, my recommendation is to not have a colectomy unless it is clinically warranted. That said, it seems you have a number of indications for colectomy: inadequate response to medications, dependency on steroids, and close family history of IBD related colon cancer. So, you probably are correct that eventually colectomy is in your future. Do you want to wait until it becomes an urgent surgery due to massive blood loss? Not the best time, but it is not possible to predict flares. 

I have not noticed folks here with PSC having different function than those without it.

Oh, and for me it was totally worth it. Even though I am now on Remicade for chronic pouchitis and have IBD related arthritis. I have had UC since I was 15, j-pouch since 40, and I am 62+ now.

Good luck with your choice!

Jan

 

I was diagnosed with UC at age 19 and finally had to have the J-Pouch surgery at age 26. I had a two step surgery, removal/ileostomy/heal, then take down. I had an ileostomy for 4 months - like you I was young and active - I personally hated it for a number of reasons; uncontrollable noises, ballooning, leaks, odor, burning, skin problems, trouble being able to change out bag by myself, uncomfortable overall for me, not to mention the relationship issues. I had the take down and it does take time to completely heal, you do have a lot of BM's the first few years, probably won't sleep through the night for a while as well. Also, J-Pouches can be noisy too, but for me not as bad as the ileostomy, sounds like hunger pains more than gas sounds. You may have pouchitis too, which feels like UC. Remember, everything takes time to heal and your body needs time to adjust to something totally new.

While I had my ileostomy my surgeon recommended exercising those anal muscles a lot and I did (squeeze/release). They can weaken when not being used when you have your ileostomy and are very hard to build back up. I did these all day long with my ileostomy and I never had one accident overnight or during the day (and I have had 2 children since then) up until I was given remicade 20 years later (I'm one of those patients that also had Crohns in my small intestine and we didn't find out until after surgery in the pathology tests. On Remicade, I was trying to heal fistulas which is common with patients with our diagnosis - didn't work for me). I was also told to try and hold BM's as long as possible in the beginning to start stretching the pouch. I would always hold it as long as possible those first years to help slow down BM's - for me it worked, it can be a little painful, but worth it. I do struggle with pouchitis at times, but as I have gotten older I have had less pouchitis but I deal with the fistulas. In the beginning I also figured out if I didn't eat after 6 pm, I could sleep through the night.  

My negatives of this surgery is maintaining a healthy immune system.  When I get a flu, cold, sore throat, etc., I can have it for weeks.  Also, maintaining levels of important nutrients and vitamins; iron, calcium, and the side affects that when lacking these nutrients can give you; thinning hair, brittle bones, decrease eyesight, etc.

I haven't been on any prescription drugs in years and if a bad bout of pouchitis hits me now, 2 Aleve is all it takes to get me back on my feet - I have had my pouch for 27 years. Be careful when taking prescribed drugs for pouchitis, they do have long term side affects, which I have dealt with (tendons, muscle, eye sight, numbness issues). Take only what you need to get better and get off of them. Don't become dependent on them thinking you can't get through a day without them.  Give your body lots of time to adjust and take one day at a time.  Living with the pouch will get better - perfect? No, but better than life with UC.

I eat what I want and have never had a problem with fruits, veggies, salads, etc. I am an active 54 year old woman with a regular exercise routine, a healthy diet, except on weekends , do plenty of activities camping/hiking, golfing, bowling. As I am now dealing with menopause, which I find is way harder than dealing with my pouch, my goal in life is just to keep moving

Personally, I love my J-Pouch way better than the ileostomy. It has given me a more normal life and I am so grateful for everyday, even if it's a bad day. 

Good luck to you🙏

Hi Cole,

I'm one of the j-poucher's that ended up with a failed j-pouch. I had to have it removed and now have an ileostomy.  That said I would still recommend trying it.  I would have always wondered how things would have gone with a j-pouch if I hadn't gotten one. 

I recommend that if the time comes you find a very experienced surgeon. I wish I'd had one that did the surgery laproscopically.  In my case the retained 2 cm of the rectum used as the "cuff", to staple the j-pouch to, caused disease that made it impossible for me to keep my j-pouch.

I was diagnosed with UC in 1996 when I was 16, almost died because of it. In 2003 I got my jpouch and I consider myself lucky because I have never (until now that I might have pouchitis) had an issue with it. For me it was the best decision I've ever made. There are bad days like when I eat garlic or onions but I rather take those bad days over another day with UC.

Good Luck 😊

A good day is 3-4? That would be awesome if I had that when I had UC. I got to the point where I wasn't able to even take the dog out to the backyard bc I would have an accident. I would come out of the bathroom white as a ghost and just need to lay down bc it would take so much out of me. And, I was going close to 25x a day. I tried Remicade, Entyvio, Prednisone, suppositories, foams, etc. Nothing worked and I couldn't stay out of the hospital for more than a few months at a time. 

I think when evaluating whether or not if the surgery is the right course for you, it's important to go through all your options, and look at best/works case scenarios. What if the pouch doesn't work? Would you be okay with a permanent ostomy? What have you tried and what more are you willing to go through before surgery? I didn't try surgery until it was my very last option. It was either me making the decision to go ahead with the surgery or I'd probably be forced to do it during an emergency, which I didn't want to have to do. 

Weigh your options and discuss it with your GI and family. Good luck with your decision.

Hello, Cole. 

When you start talking to a surgeon and decide to go with her / him, ask if you can speak with a few of the patients who have the permanent ileostomy, and to those who have a j pouch. If possible, ask to speak over the telephone with recent patients and with long term patients. In my case I talked with a fairly new ileostomy owner, and also with a couple of 10 year pouchers. Make a list of questions to ask these patients, what their life is like now, what it was like immediately after surgery, what the hospital and staff was like, what they think of the surgeon, how was their aftercare (home nurse visits). This way you will know more about the surgeon and how his team works.  And you can make your own list of Pro's and Con's according to your own life.

I had UC and had to have my colon removed in June.  I had an end ileostomy for five months before having j pouch surgery.  After I recovered from the colectomy and adjusted to the bag, I ate everything I wanted, put on healthy weight at the gym, traveled to Israel for 10 days, and took my dog on day-long hikes.  My personal experience with the j pouch is that it's been a disaster, and I haven't even had take down surgery.  I'm talking with a new surgeon about removing it because between the pain, urgency, incontinence, inflammation, loss of weight, loss of appetite, nausea, and a fistula, I haven't been able to leave my house in three months except to go to the doctor.  I realize many people have positive experiences with their j pouches, but all I want is my functional end ileostomy back.  I just mean to say that I was able to maintain my active lifestyle just fine with the bag, but I have had no kind of life since having the j pouch surgery. 

I have had my jpouch for 3 years now and just recently was diagnosed with Ulcers in pouch having alot of weightloss. I recently went to Dr. and he ecplained getting back on the g2 gatorade and add salt and sugar  and being put on TPN for a week. Would me not taking the 

I have a question?? Went to doctor today and he suggested being back on G2 with salt. I was last diagnosed with ulcers in the jpouch . Do you think i lost all kinds of weight because i stopped using salt in G2? Now i have to have port put in and stay in the hospital for a week on TPN. Thats sounds a little extreme to me.  The salt is going to make me gain weight!! I dont think so. He did explain when i do drink water plain it acts as a lubricant when it comes to the weight loss. I agree somewhat but not totally. It has to be more than that going on, ulcers being one of them. But all this weight loss is not because i did not use salt in my water,do you think?

LJK, you don’t say how much weight you lost, and over what period of time.  Short-term weight loss is often from loss of water. It’s true that you must have more going on than just how much salt you take in, but perhaps the doctor is simply trying to get more water into your body using the salt.

I though a lot about this question of whether or not I'd do the j-pouch surgery again.  I was diagnosed with UC while pregnant with my fourth child and had my colon removed when she was only 5 weeks old. (Total time between diagnosis and colostomy about 3 1/2 months.) I had the 3 part surgery with total hook-up 5 month later.My GI told me that with surgery I'd be completely healed.  That is not true.  As others have said, the first year with a j-pouch is difficult. You will learn what foods work for you and what won't.  I was totally unprepared for this.  My largest problem was a lack of sleep because my bowel liked to be awake at night.  This made life difficult raising toddlers.  A couple of years ago I finally changed GI's at the recommendation of my surgeon and he put me on some great medicine that allowed me to have a lot more control of my gut and its output.  I am finally able to sleep.

I give you all this detail not to discourage you, but to let you know that just like having UC, having a j-pouch is not the perfect fix.  It has issues of its own that you will learn to adjust to with time and help from your GI and us. When I didn't sleep well and had bouts of pouchitis, I would have said don't do it; however, since I've gotten some medicines that have helped me, I'd say go for it.  Find a good GI that you like and who is knowledgeable about j-pouches. (Unfortunately, not all are.) Choose a surgeon you trust. Go into this prepared that healing is not an instant sprint, but a marathon that will get better with time.

Hope this helps

It's very individual as far as how well things will go for you if you do decide on a j-pouch.  I have had great success so far.  I had the 3 step procedure.  I was diagnosed with moderate to severe pancolitis and had my first surgery 7 months later.  For me, age was a factor as well as the severity of my colon.  Remicade did not work for me and I was not inclined to play around with other biologics.  I was 61 when I had my first surgery and almost 62 for takedown.  My recoveries were not bad at all.  Getting used to the ileostomies, bag changing, diet, and keeping hydrated etc. we're some challenges, but not terribly difficult.  I am 18 months out from takedown.  I have anywhere from 4-6 bm's in 24 hours, never at night.  At this point I take Benefiber once a day before breakfast and 2 Immodium before bedtime.  I have no leakage.  My first pouchoscopy results showed mild inflammation in the rectal cuff, every thing else was fine.  I was able take walks and hike with my ostomy bag and after my j-pouch.  We go to the White Mountains every year and this year we will plan to hike to the top.  Many people who come on this site do so with questions, concerns and some difficulties they are having with their pouch.  I found it extremely helpful when I was first diagnosed and was up against possibly making the decision for the pouch.  I continue to check in, due to the fact that there are people on here with lots of great information.  I will also say that I was very good about following my surgeon's instructions after each surgery.  All things considered, for me, it was a good decision!  Good luck with yours!

I was terrified of getting my jpouch - I suffered through 14 years of horrible UC.  Finally got the pouch and I remember waking up from surgery, feeling like a train wreck but realizing that I no longer felt sick!!!  It was an amazing moment.  My life with the jpouch hasn't been great, but not having UC made getting the pouch the right decision.  If you can evaluate your life with UC vs. the good and bad of a pouch, that might help with your decision.  I'm considering an end ileostomy now, but here again, I'm facing life with an uncooperative, angry pouch vs feeling amazing (like the most amazing I've felt in close to 20 years - I've been hiking, I leave the house with no fear, not stressing about finding a bathroom everywhere I go...) with temp ileostomy.  Surgery is scary, I hear you, and this is a big decision...As much as this form is helpful (invaluable, actually), people who had the jpouch surgery and are successful aren't posting here but out living life.  So while yeah, there might be issues, there might not be!  Good luck with whatever you decide!

I have had a J Pouch almost 26 years after having UC for 20 years, and have battled pouchitis for almost 23 years. Pouchitis is kind of a different animal and different disease than UC. The pain I had with UC was searing and severe and the UC inflammation riddled my colon to the point where it was dissolving when taken out. This is not to mention that dysplasia has been found in the colon 9 months earlier and I had been asked to lose weight in preparation for surgery in the interim.

My pouchitis is much more treatable and less aggressive than the UC was.

The course of the disease is what made my decision to have surgery and I have no regrets about it. For those whose UC isn’t responsive to non-surgical treatments, like me, there wasn’t much of a choice. I have wondered how the progress of my UC would have gone if Remicade and Humira and the other biological drugs were around back in the 1980s and early 1990s. I will never know the answer to that question but I suspect if those treatments were around I would have exhausted all non surgical treatments. Once that is done, surgery is the only option, unless one wishes to die of toxic megacolon or cancer, either of which would have happened if I had not had surgery (toxic megacolon within weeks of surgery, according to my surgeon, who said my colon dissolved in his hands when he took it out).

Good luck-

I had UC for 20 years and got a jpouch 10 years ago and can't tell you how pleased I have been post surgery. No more running to the  bathroom concerns, no cancer concern. I'm not on this board very much but saw your post and wanted to give some positive feedback.  One of the best decisions I ever made.

Hi all,

i registered some years back but I don’t believe I have ever posted - here’s my short story 

My experience- I’m happy with the surgery (1990 at 27, active male) - had UC along with IBD Arthritis. The surgical process was an ordeal but my UC had worsened to the point it made life hard. I fought it as long as possible 6-7 years but finally Md’s said colon had to go. Dec 1990 - colectomy, spring 1991 pouch creation, summer 1991 takedown. Other than a trip back to the hospital that year for adhesions surgery ( ugh— I mean come on - back in the hospital 😠) and kidney stones in early 1992 my pouch has been uneventful. A few mild cases of pouchitis in the 1990,s that were miserable for 24-36hrs but resolved on its own, I have had no issues. Years go by without a thought to it until I forget that eating something like a bunch of raw pepper slices may not be a god idea with a j pouch. Chew well! 

It was a scary period back in the day, I was out of work, bad economic recession in New England, alone in an apartment and away from home. But I troopered through with a good support system, friends, visiting family, a caring former employer who kept me on BC/BS and good medical care 

I wish the best to anybody with IBD and hope whatever decision is made with this condition,  life works out well. 

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