Getting a permanent ileostomy

You sound like you should be taking biological drugs. The stricture at the J Pouch inlet should have been dilated, did they do that?  I am strictured in the same area- J Pouch inlet- it is very common due to backsplash stool and resulting SIBO.  My Doc said he would only dilate me if he couldn't get a scope through. He has always been able to. If that is the specific source of the blockages (which is not clear from your post), dilation would rectify the issue, although there are some risks with that.

You have not provided enough information on what antibiotics were attempted other than flagyl.  Although flagyl is one of the key ones, there are around 6 or 7 others that I used to treat pouchitis effectively for almost 25 years.  I am on Remicade now, have had the J Pouch 28.5 years and my quality of life is very good.

An end ileostomy could be a solution, but frankly there is not enough information in your post about whether you have exhausted the two lines of treatment which are antibiotics and biologics.  It's possible if you have effective treatment you can keep the pouch, although that may mean frequent or continuous antibiotic treatment (other than flagyl with drugs like cipro, xifaxin, augmentin and keflex) or with biologics like Remicade, Entyvio, Stelara or one of the other biologic drugs.  I would not give up on the J Pouch yet.  I would also seek a doctor experienced with treating problematic J Pouches.  Good luck.

@blood_stained_warrior - I agree with everything CT wrote. One thing that isn’t clear is whether you stopped the Flagyl due to side effects you actually experienced versus side effects you were concerned might occur. In either case there are a number of choices, and I’d recommend focusing on reality rather than the bad things that might happen. You definitely don’t have to feel so lousy, and it’s very likely that there are good treatment options for you.

I am sorry you are suffering but If I were you, I would honestly get a permanent ileostomy. I would be tired of the suffering and since you did well with the ostomy in the past, I think that is a great choice to make to get it again.

Keep us updated

I'm curious why Laura seems to immediately encourage everyone to get an ileostomy...especially in a case where it's fairly clear there are other treatments available.

So, here is the thing. The primary question for the original poster was regarding advice from people who have gone from j-pouch to a permanent ileostomy. Lauren has no experience to offer. Neither do I, or others who have replied. So, take all that with a grain of salt.

That said, it is perfectly fine for someone to explore options if pouch failure is becoming a likely diagnosis. Each person needs to decide what their threshold is. Some people just want to avoid more meds. Others will do anything to avoid surgery. But, none of that helps the person asking for advice.

I personally had very good results with Remicade for chronic pouchitis, but I do not have a pouch inlet stricture.

One thing I would like to point out is that reverting back to an ileostomy is not as simple as some would like to assume. Some make it seem like it is an easy reversal. It is in reality a quite difficult surgery to remove the j-pouch and it takes a long time for the perineal wound to heal. This is the source of most of the complications. It is possible to leave the pouch intact with an end ileostomy, but pouchitis is likely to continue and mucus will continue to shed that is difficult to maintain continence with. A pouch redo is another option, but is also another difficult procedure.

My real point is that we all have our ideas of what would be our own best solution, but what is needed here is advice from someone who has lived through surgery for a failed pouch.

Blood_stained_warrior, sorry for high-jacking your thread, but I wanted to be sure you got some good advice. There have been quite a few members here who opted out of their j-pouch, but may not be posting here anymore. you may want to search for posts on pouch excision or ileostomy surgery to get some older threads. In the meantime here is a link with some info for you:

https://pubmed.ncbi.nlm.nih.gov/28387059/

I hope this helps you figure out your next step.

Jan

I went to an ileostomy after having the jpouch for 25 yrs, at age 62.  I put it off  way too long due to fear of more surgery.   I documented the removal and reasons for the removal here:  https://www.j-pouch.org/topic/...al-date-and-time-set.  There are a lot of posts worth reading through, from others who have gone back to an ileostomy, on the Ostomy & Skin discussion board here.   

I went from a J pouch (that I had for 30 years) to a BCIR since I wanted to avoid the issues associated with permanent ileostomies.  That procedure, and the very similar K pouch, do not require having an external bag and is emptied with a small plastic catheter 3-5 times a day at the person’s convenience.  There is a lot of information available on the internet about both of these procedures. The removal of the J pouch and creation of a BCIR or K pouch is typically done in one operation.  Although there is nothing wrong about getting a permanent ileostomy, you may decide that one of the alternatives is more suitable for you.

Hello!

I had my J pouch formed in 1992, lived on and off antibiotics for various reasons with cipro being my favorite until things started to fall apart (iron deficiency anemia, inflamed rectal area) and my diagnosis was changed from UC to Crohn’s in 2012. I then tried Remicade and had great results but unfortunately developed antibodies. I was then on Humira and Cimzia and eventually developed fistulas and had to get a temp ileo in 2016 b/c I was so sick. The diverted J pouch was ok at first but then the mucus discharge became unbearable. After more research and thought, I finally had the J pouch removed and butt closed (Barbie butt) in 2019. Here are my thoughts as brief as can be. I really loved my j pouch and it was very hard to give it up but I felt I had no choice in the end because things got so bad and I was afraid to gamble on more meds. Rather ironic considering I am a pharmacist. The ileostomy has its issues too. It is not just the physical body changes but I am in the bathroom a lot emptying the bag because of the need to drink, drink, and drink some more. I never had hydration issues with my j pouch and only drank a little more than a normal individual would. The j pouch removal is crazy surgery, but totally worth it my opinion, if you are out of options. I got lucky and my butt was sewn shut from the inside. I was sitting on my butt without a cushion in a hard chair 4-5weeks after surgery. Amazing! There are a lot of horror stories out there about the Barbie butt surgery but that was the best part of this surgery for me. I love not having a butt b/c that is where I felt all my issues. I am not sure if you are out of options yet. A big question is what is your diagnosis and will you still have to be on meds after j pouch removal. I have Crohn’s and had my surgery at Cleveland Clinic and they said most people in my situation go on to live med free lives. I tried to follow up with local doctors and everyone wants to throw me on meds because of my Crohn’s diagnosis. If you are going to need meds with or without the J pouch, I would try the meds before getting your j pouch removed just to see if anything helps. I also had a stricture at my pouch inlet but only experienced blockages when I was opened up for other reasons (c-section, removal of ovarian cyst) so why are you having so many blockages? You can still get blockages with an ileostomy so I want to make sure the inlet of the J pouch (not scar tissue?) is your only problem area before you go ahead and have surgery. Talk to your doctor if he/she is useful. If not, try to find a doctor who is useful. I have experience with both. In the end, we can all talk about our experiences forever but you are the only one who knows what you can and can’t deal with. That being said I know it is not easy deciding so if you have any further questions, feel free to message me. Best of luck to you!

@BillV posted:

I went from a J pouch (that I had for 30 years) to a BCIR since I wanted to avoid the issues associated with permanent ileostomies.  That procedure, and the very similar K pouch, do not require having an external bag and is emptied with a small plastic catheter 3-5 times a day at the person’s convenience.  There is a lot of information available on the internet about both of these procedures. The removal of the J pouch and creation of a BCIR or K pouch is typically done in one operation.  Although there is nothing wrong about getting a permanent ileostomy, you may decide that one of the alternatives is more suitable for you.

Do you take the catheter with you when you go out??? If so, what do you put it in???

Hi, Blood Stained Warrior.  

As you go through the process of information gathering and research, another source of knowledge can be peer resource, or a peer patient. If you reach the point of talking with a surgeon, you can ask him / her if you can talk with one or two of their patients who have gone through the surgical procedure. Some doctors keep a roster of former patients who are willing to be a peer patient, or a peer support. You can ask your peer support all kinds of personal questions about their experience from start to finish. When I was facing j pouch creation, my surgeon let me chat on the phone with three of his patients, separately and privately -- a 20 year long patient; 10 year patient; and a two year patient -- so I would hear a wide range of experiences, old and new. It was very helpful because I would have the same surgeon, same hospital, and likely the same team working on me. Along with some helpful posts on this site, a peer support patient can walk and talk you through whatever direction you decide to go. Similar to having a mentor.

Hello,

People deal with medical issues on their own terms.  I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy.  In 2007 after 15 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband.  The ET nurse and I found the perfect spot together.

If a person is working with an excellent hospital and surgeon, they will have an easier time with this surgery.  I had my surgery done by Dr. Juan Nogueras at the Cleveland Clinic in Weston, FL.  My surgery took over five hours, but everything went well.  The only thing the surgeon faced was that after many fistula fixes that failed, my j-pouch had adhered to the vagina and he had to stop abdominal work and enter through the vagina to finish removing that last bit of j-pouch tissue.  Post surgery, I recovered quickly with no complications.  Upon discharge from the hospital, I had the best night's sleep I had had in years in the hotel before my husband and I headed home the next day.  My wounds healed up nicely within a 12 week period with no complications.  The wound below was sore but manageable and became even more comfortable after the stitches dissolved.  The abdominal area was sore but that wound healed up in no time too, especially after the staples were removed a week later (another long trip to Weston, FL).

I was so sick before I got my permanent ileostomy.  I worked 20 hours a week as an executive assistant for a CEO for many years--half of which time I had stool coming out of my vagina and anus non-stop.  My skin was raw and everything I ate caused me great pain when eliminating.  I suffered for a long time and continued my normal routine because I was afraid of the permanent ileostomy.  Why did I wait so long...

Now I have my life back again.  I eat anything, sleep all night, have more energy, gained weight, and there are days I just plain forget I have an ileostomy.  I was diagnosed with ulcerative colitis in 1972 at the age of 38, have had over 13 fistula repair surgeries and procedures, and finally received my permanent ileostomy at age 54.  I'm almost 68 now and life couldn't be better.  My husband and I are finally able to travel and have had lots of fun in our retirement.  He was my rock while I was ill.  Our lives are no longer on hold.  My ileostomy is 13 years old.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop you from moving forward with your life with a permanent ileostomy.  Your life will be SO MUCH BETTER.

I write this for all the people out there who are having lots of j-pouch problems.  I know there are thousands of happy j-pouch people.  I'm only offering these words to those out there who are suffering.  I just want them to know that a permanent ileostomy can be a life saver and a new beginning.

Caty