Confused and Scared - J-Pouch or Permanent Ileostomy?

[seaface]

Hello everyone,

I have been sick for a really long time, I'm one of those people that catch every cold and it lasts for twice as long as it should.
About 5 years ago I got chronic tonsillitis and ended up getting my tonsils out, but after the surgery I never really recovered and was later diagnosed with UC. I was told it could have been triggered by the IV antibiotics I received from the tonsillectomy.

After 2ish years of not responding to high doses of steroids and immunosuppresents my colon took a very bad turn for the worse and I had emergency surgery to get it out. After spending 49 days in the hospital with complications from a lung infection and coming near death during surgery I was left with an end ileostomy. My rectum and about 10cm of colon was left because at the time I was too unwell for it to be removed.

6 months down the track and I am now having problems with my rectal stump being severely inflamed and causing a lot of pain and discomfort. I've been taking daily oxycodone for at least a month now while the doctors fiddled around deciding what to do with me.
It's come to the decision that I will need my rectum and rest of the colon removed.

Here comes the hard part: Do I go with the surgery to create a J-Pouch or do I keep my end ileostomy (which I am now quite fond of).

I'm suposed to be heading back to University in a month to finish my degree and I know that isn't enough time for the pouch to be fully functional so I was going to go for the 3 step surgery, and keep a loop ileostomy for the remainder of the year, then reconnect after christmas.

Is that a good idea? Or are loop ileostomies harder to manage?
Should I just stick with a permanent ileostomy?

Knowing my medical history I'm terrified that if I opt for the J-Pouch I will end up with complications and become sick again, and will need yet another surgery to correct it, or to go back on yucky medication.

Part of me wants to stick with the permanent ileostomy because I know it would be physically easier, but it seems silly not to try the j-pouch if it could work.

I also don't want to go back to pooping my pants.

Does anyone have any ideas on what would be good? I have an appointment with my surgeon on Monday (24th) and he wanted me to have decided what to do by then so that it can be done ASAP.

:sign0085:

Advanced thankyou for reading all of that.

- Casey

(21yr old from Aust)

 

[Cross-stitch gal]

Hi. I'm sorry to hear all that you've been going through. Unfortunately, the decisions are a bit hard to make especially when they're permanent. I wish I had better ideas for you. But, can totally understand where you're going not wanting accidents.

I contacted a good friend of mine (Jim (POPS) to see if he might be able to give you some ideas. Another idea might be to check out the surgery part of our forum. There is a subforum about stoma's if you'd like to take a look. Good luck on your decision and sending you lots of hugs. :hug:

www.crohnsforum.com/forumdisplay.php?f=71

 

[Jim (POPS)]

Hello there.
My wife had a "J" pouch for over 20 years, BUT after about 20 years the scar tissue builds up and she had to have it removed and she now has a perm. ilyostomy. She loves it, (she has UC) she can eat anything, do anything and is so happy now.
I also had a temp ilyostomy and I didn't mind it much at all. I had it reversed and that was the best thing I ever did in regards to my crohns.

Its really up to you. I hope this helps.

Jim (POPS)

 

[Samboi]

Gosh Seaface. What a tough decision to have to make.
I don't envy you.
Just wanted to send you some support.

 

[Crohn'sFor Life]

I have a permanent ileostomy. I would recommend it to anyone who is unable to control their IBD with medication.

btw...I no longer poop my pants! and...I no longer have to rush to the toilet.

 

[2thFairy]

I had a J-pouch formed in January 2012, but have never used it. I really like the ileostomy. However, I do think my decision at this point has been made easier just by knowing I have the option of keeping the stoma or having the next surgery for reconnection.

I usually tell anyone who is debating over J-pouch versus permanent ileo to go with J-pouch first so they at least have the option of trying it. On the other hand, you say you have become fond of your stoma....maybe you should just keep it. That is a very difficult decision.

 

[seaface]

Thanks everyone. I have scheduled for a Jpouch operation on the 9th of July, but will have a loop ileo until I decide to reconnect. I honestly don't know if this is the right choice or not.

The surgeon has told me that there is still time to chicken out and opt for treating my stump with medication (I never responded to it before) or change my mind and keep my end ileostomy.

I know that a lot of people say it is best to just give the Jpouch a go but it's an extra 2 surgeries and a lot of pain and wasted life if it doesn't work.

My mum was relieved when I chose the Jpouch at the surgeons appt. and thinks it is 100% the right choice. But knowing how sick I was before I am so terrified something will go wrong, even going into this surgery. 49 days in hospital is too long and I don't want that to ever happen again.

Have any of you had experience with always having a bad immune system or had a really rough time when you first got your colon out? If so your opinion on what to do would be really appreciated.

Thanks again everyone.

 

[Crohn'sFor Life]

After they took my colon out, my immune system proceeded to attack my skin/nerves (full body itch) and my joints (autoimmune related rheumatoid arthritis). At least there are no problems with my digestive system now!

 

[Sookie's Mom]

Dear Seaface, I'm so sorry to hear what you're going through. I had a J-Pouch procedure done in 1993 after having UC for 5+ years. I had toxic megacolon and spent a month in the hospital post surgery. For almost 20 years I was pretty symptom free. Initially I had to take immodium and had pouchitis often but when I started taking probiotics 10 years ago that stopped. In the past 2-3 years I've had reoccurring symptoms and was diagnosed with Crohns....they said that I must have been misdiagnosed initially and oftentimes it's hard to get the diagnosis nailed. Needless to say I was devastated after thinking that I would never have these problems again. This past January I developed 3 fistulas and had to have surgery to have setons put in place for drainage...ugh. They are more miserable than a J-Pouch surgery & recovery. Anyway, the reason I'm telling you all this background is that the J-Pouch procedure was the best thing I ever did. I had almost 20 years of near symptom free living and would not change a thing. We never know what life is going to bring, particularly with this disease. You're a young girl and a J-pouch will be easier to go forth with. When I had my surgery I had been married less than 6 months so there was alot of adjustments but it made things appear more normal and easier to adjust. Not sure if this helped at all but even though I'm going through alot right now I still would do it all again. Keep us posted and I will pray that all goes well for you!

 

[UnXmas]

Thanks everyone. I have scheduled for a Jpouch operation on the 9th of July, but will have a loop ileo until I decide to reconnect. I honestly don't know if this is the right choice or not.

The surgeon has told me that there is still time to chicken out and opt for treating my stump with medication (I never responded to it before) or change my mind and keep my end ileostomy.

I know that a lot of people say it is best to just give the Jpouch a go but it's an extra 2 surgeries and a lot of pain and wasted life if it doesn't work.

My mum was relieved when I chose the Jpouch at the surgeons appt. and thinks it is 100% the right choice. But knowing how sick I was before I am so terrified something will go wrong, even going into this surgery. 49 days in hospital is too long and I don't want that to ever happen again.

Have any of you had experience with always having a bad immune system or had a really rough time when you first got your colon out? If so your opinion on what to do would be really appreciated.

Thanks again everyone.

I'm not sure how much help I can be, but I'm in a fairly similar situation. I had my colon removed in 2009. To be honest I'm not really sure what a Jpouch is! As far as I know at the moment my small intestine is joined to my rectum. What would the difference be between that and a Jpouch?

Anyway, now I am planning to have an ileostomy. The options I was given were to either keep things as they are now, or to have an ileostomy, which will be reversible, but with no plans to actually reverse it unless I have unexpected problems.

I chose the ileostomy because I don't see how it can be worse. I have a lot of rectal problems, some of my worst symptoms are pain and difficulty having a bm, I end up going back and fourth to the loo dozens of times, which is very inconvenient, messy and time consuming. I also have occasional problems with incontinence, and I often seem to get diarrhoea when I try to eat or in the middle of the night.

My surgeon had delayed giving me an ostomy earlier because he seems to think the look of them will be a problem. He keeps saying how young I am to have an ileostomy for life. This still seems to be his main reservation - that a young person wouldn't want something as unattractive as an ostomy.

He doesn't seem to grasp how I feel about an ileostomy. I honestly couldn't care less what it looks like. It really surprises me, because I've heard this in other doctors' opinions on ostomies too - they seem to think an ostomy would ruin my body image and self esteem, but it never ever seems to occur to them that I'm already dealing with dirty incontinence pads. I honestly don't think I'm going to mind an ileostomy more than what I'm already dealing with in terms of its attractiveness. Their concerns for my self image also seem so superficial when I think of the improvements in pain and time spent in the bathroom that I should get from an ileostomy.

So I guess I'm saying I understand the feeling you're getting that others seem to think you should try to avoid an ostomy unless absolutely necessary, that it should be the absolute last resort. But I don't think that's necessarily true - it could be that potentially having to go through more surgeries, or having accidents, etc. as a result of opting not to have an ostomy yet makes getting an ostomy now a better choice for you.

It really is hard to make these decisions because there is no way to know exactly how any surgery will turn out. I think it is important to listen to the opinions of your doctors and family members, but ultimately you're the only one who knows what your priorities are. When you consider which choice others are recommending you to make, make sure their reasons for recommending a particular option are in line with your own.