J-pouch with major issues and no hope

[Elissa11182]

I had UC for 11 years until I became unresponsive to meds and doctors decided I needed to do a reversal ileostomy. After the reversal in July 2015, I was ok until November with the normal healing process. Since November I have been hospitalized 3 times for dehydration and infections. I have many accidents at night and even through a shift at work. I cry most days because I have the most unbearable rectum pain when I walk or after using the bathroom which is about 15x a day. They just recently did a scope and said there was some inflammation and started me on an antibiotic. But hasn't helped. They now started me on an antiflamitory and tumeric. On top of the pain and everything else I am battle depression and major anxiety. I feel so alone and hopeless. I don't know what to do and feeling like my doctors do not even know what do. Has anyone else suffered through this and how do you get through each day working? I have always worked hard everyday so this is mentally making me feel like I am not a worthy person. Is it possible the doctors are missing something?

[Doris+]

Welcome Elissa. I'm so sorry things are difficult for you. When you are in pain everything negative become gigantic. It sounds like you have good reason to feel overwhelmed. First, please read my post "6 months post takedown"...Doris from February, for some info to help with the number and thickness of stools. If you can slow things down and let your bottom heal you will feel much better. Eating foods like mashed potatoes, rice, bread, bananas will help. If you can possibly afford it, go online and buy a bidet toilet seat. You must keep your bottom clean but the less you touch your bottom (NO toilet paper) the better you'll feel. I still have days where the pain can be almost overwhelming. It seems as if one drop of liquid stool on skin is like battery acid. I use LOTS of Butt Paste. Complications with the J pouch and mesh are common. My surgeon refused to do it so I really can't be of any help there except to say that the accepted way to address this is antibiotics. Since this hasn't helped you, find a colorectal surgeon for a second opinion. Try your closest teaching hospital. If you are using a general surgeon, yes, he/she could be missing something. I might also suggest you talk to your doctor about your depression. Elissa, you are not alone. You just need a little help along this difficult path. Please do not hesitate with questions you may have. Everyone on this site will help if they can. Doris

[To Good Health]

(((((((((((((((((((((((((((( Elissa11182)))))))))))))))))))))))))))))))))))))))

Hugs to you. With all this pain as well as accidents, it is no wonder that you are feeling depressed and hopeless. I'm not familiar with UC as my reason for an ostomy was cancer. Do you mean that you had an ileostomy some time ago and then a reversal last July? I can empathize with the 15 or more bathroom trips a day as I had that after my reversal in 2008. I also had a very sore bottom. Calmoseptine from a tube was my best friend. You got some good tips from Doris+

There IS hope. pm me if you like.
To Good Health

[Button]

The J-pouch forum on MDJunction is a very active support forum with like-minded people like yourself who have J-pouches.

Very few is any people on this forum have J-pouches, so responses to your post may be few.

Google "MDJunction" and then go to the sub-section for the J-pouch forum (I am not well versed on how to include a link). The J-pouch support forum on MDJunction is a very, very active forum. Your will find company there with other individuals with J pouches.
- karen -

[Mysticobra]

I can empathize with you.
I had a j Pouch for two years and went through it all.
I was in the 20 percent range of people that the pouch just will not function for them.
Nothing was wrong.... No infections and it was healthy.
After two years of suffering. I gave up and had it removed. Which people avoid at all costs. I do and don't understand that at times because I see all the time wasted in going to save the pouch at all costs while suffering mentally and physically. It's crazy. But found it wasn't worth it. It was only getting worse. In fact I was worse with the pouch than the UC. I was done wasting time on it and didn't want to spend more years trying to figure out what couldn't be figured out. I went to several surgeons. Life is short. And at 60 years old I figured I had twenty to wear it. So if your younger I may fight to keep it. I found no need to keep going with the pouch. It was TERRIBLE.....
Butt burn is underrated. It ruins your life if you have it and NOTHING.... Nothing takes it away.
I have an ileo now and have no pain or urges to go.... And I do mean constant urge to go all the time.
No one wants it. I didn't for sure. After all the surgeries hospital stays and such. I was done. But.... I dreaded one more surgery and the finality of it. But now that I have had it awhile.... Well... It's so nice to just go.
I am four months out from receiving the ileo. Now.. I don't regret it. I'm not in love with it but I do not hurt anymore. I eat anything and everything with no worries with what's to come
Now I am not suggesting you have yours removed. Because that is the final option and the end.
But if you are suffering like I was.... There was no question in doing it.
I wish you the best.
Richard

[woodstock69]

I have had my j pouch 30 years due to 12 years with uc
4 years ago I developed a pouch vaginal fistula
I had several procedures and an ileostomy for a year after a bio lift repair which worked
I had reconnect in May and have been miserable since
a bidet is the worst thing for perianal issues
I am now using barrier cream wipes which are great I have every ointment but find baby aquafor the best
I want a permanent ostomy
at least I was eating
now I feel frustrated and in so much pain I cry every bm
I have to wait a few more months
I wish I could have an end ileo rectum removed without taking the j pouch out as I hear that is a huge surgery
I know ostomy is not problem free but it is so much better than this
all j pouches are not the same

[woodstock69]

reading your story is like my own except I had a great pouch for 25 years
now I am with you st 63 I want to travel and eat
I hate the burn
it is worse than uc
please tell me more about the removal and recovery if you don't mind sharing
thanks Richard so much for posting

[susan f]

I had a j-pouch for 15 years with chronic inflammation, pouch/vaginal fistula, anal fissures and abscesses. I was treated with antibiotics which kind of worked. After getting to the point where I was regularly getting abscesses and had become incontinent, I opted for a permanent ileostomy.

In my case it has turned out that I have CD, not UC, which helped explain why I had so many issues.

woodstock69: My surgeon wanted to leave the j-pouch in place and remove it later if needed, but I really only wanted to have one surgery - and since I had had inflammation in the pouch prior to the temporary ileostomy take-down, I thought my chances of having to have it removed were pretty high. So if you really didn't want to have the j-pouch excised, then I think that is something you can discuss with your surgeon.

[BillV]

I know exactly what you are going through since I had to have my j pouch of 30 years removed because of recurrent high grade dysplasia in the rectal cuff. For me, the thought of having an ileostomy was scary and an option that I wanted to avoid if at all possible. Fortunately, I had some familiarity with the k pouch and the similar BCIR, both of which avoid the need for an external bag and its associated issues. There is a lot of information and even some videos on the internet about both of these procedures.

I opted for the BCIR, which was done by Dr. Ernest Rehnke in St. Petersburg, Florida. My surgery included removal of my j pouch and, to the best of my memory, was easier to tolerate than my original j pouch surgery. The first two days were the most painful, but the medication I was given made it more bearable. The results for me have been excellent and I enjoy a very good quality of life. Three months post-op, I was doing most of the activities I enjoy and eating well. I am so thankful that there were options available for me, but that decision is a personal one that is best made after researching your options.
Bill

[woodstock69]

My son has a kock pouch, I am very familiar, I would never opt for it myself, as far as I see the end result is an ostomy, he realizes this as well, it is only a matter of when not if, he has had his k pouch since 2006 and had many repairs in Ohio and New Orleans. My son saw consulted with BCIR when he had his ostomy after j pouch removal and he chose Dr Fazio even though BCIR is closer. Good luck with yours I hope it continues to work for you.