hello everyone,

I am waiting for a surgery date to have my pouch/rectum removed for a permanent end ileo.
I am worried I am not making the right decision, or how I should be feeling with a jpouch.

My main problems are rectal spasms which are very painful and never go away, and pouchitis which requires constant use of flagyl (recently switched to Tinidazole). I also have totals lactulose to allow things to move through as I'm always constipated.

Are rectal spasms which don't allow me to work, a good reason to go to an irreversible end ileo? Also want to be off the drugs and feel better, always bloated and fatigued.

Should these problems go away with the ostomy? How long do people usually live with the ostomy, I've never heard about life expectancy or if the stoma gets weaker or any other issues with age?

Thank you.

How long have you had your pouch?
Did these issues start immediately or just now start to come on?
Has your cuff been checked for cuffitis?
Have you changed your diet to easier foods to see if this helps?
Do you take probiotics or digestive enzymes?

Need some more info


Derek

Hi,

I have had the pouch for 3 years. I have had the pain since step 2 of 3 when the jpouch was made and I had a temp ileo.

I get cuffitis from time to time, usually when I try to go off the antibiotics, along with pouchitis.

I have tried different diets and probiotics, including vsl #3. Without success.

Botox injections into the rectum did help for about 4 months, but too painful to do. Also my second attempt with it did not work as well so its never a sure thing.

I am afraid of another surgery because I came out worse after the last 3. Had to have a 4 compartment fasciotomy immediately after one because an artery in my leg was crushed somehow.

I also can't continue to live like this and need to know I tried everything to live without pain, but would hate to be worse or something and have the ostomy.

i have them as well, have you tried antispasmodic meds? i tried them but due to side effect of horrible blurred vision i had to discontinue. I am on a low maint of oxycodone that really helps to calm the spasms down a bit. i also have belladonna suppositories which help when they get really bad. check into those before making such a huge decision.

hi,

I am using belladona opium supp. About 3-6 daily for the past few years, as well as hydromorphone. I guess I,m pretty much done. I asked the surgeon to redo pouch and fix anything he sees, otherwise just goto an end ileo.

I just can't believe there is nothing for anal spasm. I guess its the same for pouchitis. No cure yet.

There are some options for anal spasms:

Nitro based cream
Nefedepine based cream
Botox injections in the area concerned.

- Solomin

Jay,

Where are you located in Canada? I am in Montreal and I need to have pouch reconstruction surgery. I have yet to find a doctor in Canada capable of doing this type of surgery. Who do you have in mind for yours if you decide to go through with it?

Thanks,

Solomin

Not sure if it's an option for you, but medical marijuana really helps with pain and spasms. I have just been using the edible types and it provides great relief, especially at night. It also thickens things up too which also helps me not go as much. I was really amazed at how well it cut the pain though and eliminate spasms when I was going. In case you need to know, Indica is the preferred strain for pain/sleep and Sativa is the more "alert" strain for use during the day. No driving obviously though. Hope you feel better, whichever road you choose.

I use codeine to slow things and Valium or Ativan when the spasms are really bad.

I too am contemplating going back to an ostomy as the constant pouchitis is intolerable.

Good luck to you. I know its very tough.

Hi,

I have tried the nitro cream an it gave me bad headaches, and the botox works temporarily. Marijuana helps quite a bit, but doesn't get rid of the pouchotis. It works well at nightthough.

Solomin, I am going to Dr. Zane Cohen at Mt. Sinai in Toronto. I was told he would be the best in canada and he has trained many other surgeons, including 2 of the three best in BC.

Another big issue I gave is my food doesn't pass through well and is always solid. I thought it was suposed to be watery, requiring ammonium and other thickeners. Anyone know why this is?


Also, pouch is quite acceptable and pain free when I don't have pouchitis and I use lactulose to get things watery (even doesn't cause rectal spasm after going to bathroom).

You're not alone. I simply didn't want to stay on the antibiotics, none of which are intended for long term use and many with undesirable potentially harmful side affects. And often even with the drugs I still had issues with pouchitis. I'm having mine removed next month.

I understand the permanent end ileo should provide better results than the temporary ileo. Also when I had the temporary ileo while it came with its own hurdles I was never in pain, nor was I going to the bathroom 20 times in a day.

Good luck in whatever decision you make.

jay-p, my j-pouch experience has been a roller coast ride so far but I have been reminded in last few days of how much lomotil helps me for those awful rectal spasms.

if you for some reason haven't tried lomotil, definitely give it a try. immodium has never done much for me but lomotil definitely slows things down for me and decreases and sometimes almost eliminates those awful rectal spasms......

Well its good to know im not alone on my sinking raft, lol. Good luck tikibar!!

I'm still waiting for my date, I think my surgeons office is less interested in hurrying for me because nobody seems sure which province will pay for the surgery. Not sure how it really works, i was thinking not to mention anything and just get it done, i can better deal with issues once I am pain free.

Hi Mike, my problem is my too solid and slow, which causes issues. I would like it to be faster and watery. I guess from your post, either way can have the same issues, so may be something else is the cause of spasms.

I've never had this done but I read about people on here all the time getting "dilated" to make more room for the BM to come out.

Could it be every thing is slow because there's not a big enough exit oprning or large enough at the top of thr pouch too? The waste could be sitting inside too long and that causes problems.

I hope you find relief soon.

My mom is almost 80 and has had an ileostomy for 50 years now. She has never even had any other surgery since the original stoma was constructed. She takes no drugs, has no spasms, and none of the problems a j poucher has.