@Mpale033 posted:

Good evening to all,

I have a a couple of questions I think some knowledgeable people on her would know the answer to in a general sense,

I am not happy at all with my jpouch and have been highly debating going back to a permanent ileostomy. For those that had a good experience with a end ileostomy, and had a Jpouch, but then went back to ileostomy, what is the transition like?

I had a great experience with my ileostomy, no issues whatsoever, but I am wondering since they would be cutting my jpouch out; there would be less small intestine left which makes me think the transition time may be even shorter than before.

I just wish I could go back to life with my end ileostomy! Going on 3 years of struggling with my pouch and I am at wits end.

Thankful for any information or advice I receive in advance.

Michael

Hi Michael,

Sorry your having so much trouble with your pouch, what type of issues with your pouch are you having?

I had the opposite, hated my ileostomy, have had my j-pouch for 40yrs. I think finding the right doctor & medicines may change your mind to keep your pouch. Good luck with the path you choose.

someone just posted the same topic your asking, lots of good info on that thread

Hi there;

Thank you for your reply.

My issues are loads of abdominal pain, bloating, gas, incontinence at night, and not being able to eat anything that’s not low fibre. I eat all low fibre foods and still have so many issues. Have tried every diet under the sun and no luck.

antibiotics helps with some things like the incontinence but not much else.

I am going crazy with my diet right now. I have not had fruits, vegetables, nuts, seeds, much dairy in 3 years. All I eat is bland carbs and meats. When I eat anything with fibre or fruits and vegetables I feel like I need to go the hospital because of the pain I’m in.

I plan everything around my symptoms and I feel like I’m getting held back from everything including having fun with my girlfriend, family, friends, and work.

again, appreciate any input from anyone.

Michael

Michael,

I am sorry that your pouch has caused so much trouble.  I have read a few medical papers about removing J Pouches and going back to Ileostomies - almost all of those patients had good or near perfect performance with the shorter end ileostomy.  The transit time could be a little shorter, but almost all reported a good quality of life after an adaption period.  When they take the J Pouch our, they often can grab some bowel that leads down to the JPouch.  So in essence, you will only lose about 40 centimeters (the amount to created the actual J Pouch).  Also, if your end ileostomy was that excellent, your transit time was probably reasonably normal to start with.  It’s clearly a big and scary decision, what does your surgeon say?  

Hi Doug,

I appreciate your response.

I have not discussed with my surgeon yet. I have been bounced around by my specialists from one doctor to the next. My surgeon says talk to my GI specialist, my GI specialist ran all the tests she could and can’t find anything telling as to what is affecting me. My family doctor does not have any expertise about Jpouches. It’s a whole game of pass the buck with these people.

Covid has put a huge pause on our medical system here in Canada and I can’t get in for an appointment or even phone call with any specialists until February or anything.

I feel so alone and left out to figure things out on my own because no one is offering me help. I cannot get a second opinion quick enough because everyone is backlogged because of Covid.

I truly do not know what to do that is why I am posting here.

thanks, Michael

Hi Michael,

This disease is very difficult and could be quite isolating.  Also, at the same time you are suffering.  We here on this site can help.  First, I would try to find another GI doctor in Canada that may have more experience with J Pouches.  Maybe at one of the big academic hospitals.  I think your current GI doctor may be out of ideas.  It could take months to see him or her, but it may be worth it.  You can probably google some potential doctors and make some calls.  It seems that many of us find a solution when we team up with a Crohn’s/Colitis specialist.  Three years is a long time, and it must have been hell, but there is hope.  It seems like the vast majority of patients do great with an end ileostomy after the loss of a J Pouch, hopefully you will get some help from a new doctor to improve your J Pouch function, if not you can always go back to an ileostomy and you will be healthy again.  Have you been on any antispasmodic medicines?  It seems like you have a very sensitive J Pouch.

I am sorry you are having problems; I definitely agree with your decision to get a end ileostomy if you are not happy with a J-pouch. I hope everything works out for you

Let me know how everything goes

Hi M,

All I can tell you is that an end ileo gave me a normal life.  After the first several months I was able to slowly reintroduce a normal and varied diet and return to all my old activities.  No one ever knows that I wear a bag.  There are so many varieties to fit your personal needs and what a relief not having to know where the nearest bathroom is located.  I hope you are happy with whatever decision you make and that you have a much better 2021

Hi, I also am running a forum asking for the same help! I have had a j pouch since 2007 and always dealt with chronic pouchitis and am on the last of the drugs to try and it too isn't working! I was awaken last night every minute on the hour with horrible gas and cramping! i sleep with pads and go through about 3 changes a night! Words can not express how tired I am in living with constant pain, cramping and accidents every time I sleep! I am at the point were I want God to take me home and the only next best option is to get this bag out!

Hi. I am also in Canada and it’s not easy here to get to see specialists and Covid has made it much more difficult.

Hello Michael and Danny, I had the jpouch since 2000 and this last year 2020 has been really bad, experiencing lots of painful cramps, gas, nights  licking and twice a partial blockage. Eventually I was able to find a very good GI and surgeon and a fantastic team of jpouch nurses. The help to my problems has been the use of  Medina catheters, which help to empty the jpouch of everything,  gas included. I use also a special pump Aquqflush which insert water and help emptying too. Unfortunately my jpouch over the years seem to have slightly moved into a position that makes empty on my own very difficult and I had to have a few dilatations. I was so much in pain but these two things catheter and pump have been helping. I am now realising I have also to be very careful not to eat too much fiber as the risque of blocage remains. When I experience these painful days because I ate the wrong things I really feel I would like to return to the stoma.
i hope you can find a doctor who can order or find where to get a Medina catheter and/or Aquaflush, as these can be really helpful.

Kind regards and best wishes.

Patrizia

I assume but don't know, if that would be used through the rear end! I went through 5 years of bladder cancer and have a deep hatred for catheters! I am so happy for you finding much needed relief, but my mind wrestles with wondering if dealing with that would be far more difficult than an end ileostomy!???

@fisherdan posted:

I assume but don't know, if that would be used through the rear end! I went through 5 years of bladder cancer and have a deep hatred for catheters! I am so happy for you finding much needed relief, but my mind wrestles with wondering if dealing with that would be far more difficult than an end ileostomy!???

I am sorry to hear about your bladder cancer, do you have a stoma for your pee??? And is your bladder out???

I had 5 years of treatment and I was cancer free but the treatment was through a cathiter! I was finally getting my U.C under control and then found out i also had that and I was being treated for small bile ducts in my liver! So after 14 years of chronic pouchitis, I would not mind having a break!

@fisherdan posted:

I had 5 years of treatment and I was cancer free but the treatment was through a cathiter! I was finally getting my U.C under control and then found out i also had that and I was being treated for small bile ducts in my liver! So after 14 years of chronic pouchitis, I would not mind having a break!

Congratulations! You are very resilient Nothing can beat you

Michael, sounds like you are in a real pickle and the pandemic has put a huge roadblock on progress for you. Here in the US most hospitals have a moratorium on elective procedures, as they are in a critical shortage of beds, equipment, and staff. I see you are in Ottowa. If you are willing to travel, maybe you can get a refferal to one of the top notch surgeons in Toronto. We have a member who is in Toronto who had pouch failure and wound up with an end ileostomy. Maybe he can give you some insight on how to get the ball rolling. He is not on here much now. Maybe you can send him a private message.
https://www.j-pouch.org/member/eric

Jan

I had my pouch removed after 25 yrs.  The transition wasn't too difficult, once I recovered from the surgery.  It was a bit more difficult to get my head around a permanent stoma than I thought it would be, but I'm there now.  It made a huge difference once I got my set-up (bags, wafers, etc.) all worked out.

As mentioned above, I think just my pouch was removed, and very little "extra" small intestine, if any (I did get a "Barbie Butt").  Transit time varies greatly dependent on the particular food eaten or drink consumed.  I empty whenever the bag is full, or whenever I leave the house, and 1-2 times/night - probably 8 "full" bags/day.  I eat anything I want, but I do avoid large quantities of really gaseous foods.  I really don't know if I have a "normal" transit time for those of us with end ileostomies and with a pouch removed, but it feels normal to me.  My labs are always good.

I hope you can find some relief.

Hi, I talk to a surgeon about what would be best for me { in a couple weeks} To change to a permanent Ileostomy, will all the pain, cramping, hip and tailbone, and joint pain be no more? I am a bit scared and i don't no why? I am not afraid of going to heaven at all, if anything, I fear the recovery after surgery at nearly 67 years old! I pray my skin is not like my first ileostomy and then my Loop from Hell!!!! I was covered with blisters all around the sight and the loop was almost impossible to seal and not leak! I expect everything has changed since 2007 when I had my first stoma and then the loop! I just want not to worry about accidents every night and up every 2 hours to run to the bathroom and change cloths and bed pad and have to clean toilet 5 times a day from back splash! What really stinks is they told me after I had colon removed that my hell of U.C. would be over! Opps, you have Chrohn's and chronic pouchitis! My hell became worse! Tired of the war I can't win!

Danny, I am so sorry you are going through this and that Covid is making it worse. Life sometimes sucks. Those of us who have been through this are tough - we have to be, but it sure can get us down. I hope you find some help soon. you deserve it.

Hi Danny - your situation is terrible.  So sorry.  I am not sure how long you had the end ileostomy for in 2007, but bag technology has advanced, and over time most people seem to be able to correct skin issues that surround the wearing of an appliance.  It is certainly not perfect, but stoma nurses could help you if you decide to go to an end ileostomy.  If you get the end ileostomy ask the surgeon to make you a longer stoma, so you can bag it well. I am getting ready personally for my takedown surgery, and extremely nervous about life with a J Pouch, because my bag gave me great control.  I will commit to a certain amount of time with the J Pouch but if it causes me big problems - I am grateful that going back to an end ileostomy is an option.  

Thanks, your comment brought comfort! I wish it would have worked and now I am out of drug options since remicade, Stelara, Entyvio. Humira, never worked! Will the fatigue and pain, cramping, go away??? Anyone know the benefits I can count on?

I don’t want to stray you incorrectly, so your GI or surgeon would need to evaluate you.  But from what I have read about pouches that fail due to untreatable pouchitis or other things like fistulas, when they are removed, if they were indeed the source of inflammation, many patients seem to become symptom free.  Now with Crohn’s as you know, it can attack the entire GI, so it could be complicated.  That would be a key question to ask your medical team “if I excise the J Pouch - will my bad symptoms go away”.  I think that would be a key factor that the surgeon will diagnose.  I hope you get to see the surgeon soon.

Doug

@Doug K posted:

I don’t want to stray you incorrectly, so your GI or surgeon would need to evaluate you.  But from what I have read about pouches that fail due to untreatable pouchitis or other things like fistulas, when they are removed, if they were indeed the source of inflammation, many patients seem to become symptom free.  Now with Crohn’s as you know, it can attack the entire GI, so it could be complicated.  That would be a key question to ask your medical team “if I excise the J Pouch - will my bad symptoms go away”.  I think that would be a key factor that the surgeon will diagnose.  I hope you get to see the surgeon soon.

Doug

Good Doug!

thanks Doug, I really appreciate your help! It is not like we can just talk to a casual friend and has no clue what we deal with daily! Even the surgery and recovery process! My surgeries were 14 years ago and now I have AFIB and on blood thinner and a beta blocker for my heart rate! I know I will be okay or in heaven, but I dread the hospital recovery! I wonder if they keep you in there as long as the first surgery? They will answer all that when I see the surgeon! thanks!

Danny - those hospital stays are indeed tough, but don’t lose hope.  Maybe the surgeon can make progress somehow on your situation.  I would be interested as to what they advise you to do.  Let us know.  Hopefully you can see him/her soon.

i will keep in touch!

Hi Danny,

your issues are even harder than mine.

I don't have cramps or too much gas. I can ease my chronic pouchitis with budesonide, and once a month I take antibiotics for about one week (which has the best effect and reduces gas as well as any smell).

My former meds include Remicade, Entyvio, Aza and Stelara. Now I'll try Adalimumab as a second TNF-alpha blocker.

My permanent inflammation in the pouch and the ileum terminale has been diagnosed to be similar to Crohn's at the last scope, while in the 16 years before they always said it would be colitis-like.

I'm running out of options and patience by the time and I'm also thinking about an ileostomy. I already was recommended to do so after a consultation at hospital. Unfortunately the last part of my ileum is also affected and would be removed for a permanent ileostomy I guess. So a loop ileostomy would be a possibility to see how I get along with a stoma with the option to go back to the pouch. But of course I'm not keen on another surgery and I will wait till Corona is over anyway.

Hope you'll get rid of your problems with the pouch soon.

Steve

I would never agree to a loop! That was the most horrible time ever! Changing an appliance and it not immediately leaking was almost impossible! My skin was constant blisters all around and no chance for healing due to leakage! I have like 4 or 5 inches left from large intestine in rectum that I expect will be removed! I totally dread waking up from that surgery because my 3 surgeries were not fun! But for me not having to go through 3 pads every night and 3 under wear and clean the over spray in toilet 7 times a week, would be so nice! I also have gas all night long about non stop! Aching in joints, tail bone and hips is also a regular problem, besides cramping and having small burst of leakage at any time or moment, gets you emotionally down or angry! What really sucks is ever since I have had this, I have had my hopes raised a hundred times of a new med to put me in remission and not one single time have I ever had remission! The best I ever got was perhaps, no accidents for a few nights in a row! the war never ends!

Hi Danny,

gas all night long sounds like bacteria overgrowth. Do you have no relief from antibiotics (Cipro & Flagyl together always helped me)?

Several years ago I had a couple of weeks where I woke up every hour at night with slight stomache ache (but too much to sleep again) and I had to get up and move a bit until I felt better. So I know how exhausting that can be.

Remission is also a foreign word for me by the way.

But whatever happens, the most important thing is never to lose your hope and your humor.

Steve