Hi,
You may or may not have seen my name pop up lately, but I've been talking a lot about going back to an ileo.
Well, the latest is I've booked the appointment with the surgeon who I hope will be doing the permanent ileo. But he was going away on holidays the day after I made the booking(my great timing again) so I couldn't see him for another 4 weeks anyway.
Thing is everyday is a struggle to just exist, so I'm looking for stories of encouragement from anyone who's gone back to a permanent ileo, and updates from those who've already posted in the past about returning to the ileo. It's going to be hard enough reaching the appointment, let alone the surgery(hoping it will be really soon after the appointment). Tell me all the things you can now do again that you'd put on hold for example with your failing/failed jpouch, and just what fun stuff you've been doing with the ileo in general.

Instead of seeing jpouch improvement, I'm seeing my health decline daily.

Thanks,
Ad

Dear Ad,

After a j-pouch made in 1992 and a 15 year struggle with a j-pouch/vaginal fistula, I finally listened to my surgeon and received my life back (permanent ileostomy) in July, 2007. I have a beautifully made stoma and use a two part system with a moldable flange (Convatec). The only problem I've had is an episode of pyoderma gangrenosum the first year out, which with the help of my surgeon, cleared up and I've had no troubles since. I've had over 20 years worth of multiple medical exams (for ulcerative colitis), tests (including the Prometheus Test which ruled out Crohns; 90% UC), procedures, hospitalizations, recovery periods, physical therapy, and approximately 15 surgeries. These included colon and rectum removal, j-pouch, multiple fistula repairs, including having a graciloplasty done in Boston, and finally a permanent ileostomy.

I tried everything to save my j-pouch and to be "normal", but it's this permanent ileostomy that has finally made me "normal" again. I'm on no meds, have no embarrassing leakage and/or smells coming from my anus or vagina, sleep through the night, and eat anything (but careful with corn, nuts, raw vegetables and popcorn--chew, chew). I've become my confident self again, and nobody knows I have an ostomy unless I tell them. I trust my appliance system and I change it every five days. I am no longer imprisoned by my medical problems. I've moved on; life really is good! By the way, I'm 58 years old and was diagnosed with UC at 38.

I hope this helps. This is a huge decision and it sounds like you are truly thinking it through very carefully.

Caty

This message has been edited. Last edited by: Caty,

Ad,
You sound just like I did. Search for my posts- haven't posted here in a long while, but I went back to a permanent ileostomy back in 2008, and have every freedom I had prior to any surgeries with my ostomy.

Don't get me wrong, there are days that it annoys me, but overall, I can do anything, including sleeping through the night, (which I SORELY missed with my j-pouch for 3 years) ice hockey, softball, wakeboarding, golf, etc.

//Todd

When replying to this post, would you please indicate if you have UC or CD?

Thank you,
Lynne

My decision to go back to a perm ileo was kinda made for me due to recurrent fistulas. I had a temp ileo for about 1 1/2 years and then we did a reversal and within a month or so the fistulas returned so that was a no brainer for me. I never felt better than w/the ileo. I've gained my weight back, take no meds, sleep all night, can travel anywhere without being worried about where the bathroom is or if I'll be sick. The list is endless. I was originally dx w/UC but it was changed to Chrons 2 years ago when I originally got the fistulas. I can eat anything I want, I'm not a big popcorn eater so thats not a problem for me, corn on the cob is fine--just chew it well. I loovvee salads and am so happy that I can eat an endless amount of them again w/out the poops after. I look forward to living life and doing what I want rather than living life in the bathroom. I will say it was very hard at first, not only the physical soreness from surgery but I think mine was more mental. It was rough adjusting at first b/c of body image but you can't dwell on it or it will consume you. I had a wonderful support system thru my husband and friends/family. I guess I could always ask why did I ever do the jpouch in the first place but I try to always think, it could be worse and I feel great. I wish you the best in whatever you choose.

My life is so much better. six months since surgery and I feel better than I have in years with j-pouch. No butt burn, eat what I want, put on some much needed weight, no antibiotics, no tincture of opium, no nothing. It took three months to get past the complications I had and since then I continue to improve. Real food made all the difference. Hang in there and I pray you do as well as I have. I am 64 so think my age has contibuted to slow return of energy. I am past three hour daily naps. I enjoy life so much more, no bathroom emergencies.

Yeah, I've definately made the decision to get the permanent ileo. It's just the wait between now and then that's so hard, so thank you for your replies. I appreciate you taking the time to post.

Caty: You've been through a lot. Wow. Your story inspires me. To know that a permanent ileostomy has let you feel well again after everything you've been through is encouraging for sure. Really glad you're enjoying life now.

Tod: Ice Hockey and Wakeboarding with an ileo. I've never read of anyone that's been able to do those sports with an ileo before, so that just rocks. And reminds me of how good this will be. I only had 4 months with my temp end ileo, but it was the best 4 months i'd had for a long time due to UC. The last couple of months with it I'd had no leaks at all. So as long as I get a good stoma, I feel really confident about that side of things.

L. Mac: How's it going by the way? I know things weren't going so well for you. Have you had any improvement yet?
In regards to your question, I had UC from what they can tell(they tested the colon after it was removed and those tests were inline with the UC diagnosis i'd been given by the GI's), but haven't really had too many, or any tests actually to prove UC or Crohns since then.

Country Girl: Glad to see it's worked out so well for you too. I really wish I'd never had the jpouch done, but then would the 'what if?' question always have been there eating away at me if i'd never tried. I don't know. I feel annoyed that i've lost 40cm of perfect small bowel for nothing though, and 6 months+ at least of my life will have been a complete waste of time. Indescribable pain. Scared children/wife watching this happen to me day after day. But again, would the 'what if?' question have been worse. /shrug
I agree though, it could be worse...you're right there.

Selma: Can't wait to stop needing all the medication, all the different creams for my bum, the endless baby wipes...the etc etc lol. Thanks for your kind words. I'm so glad you're getting a chance to enjoy your life properly now. Have an extra chocolate for me!

Thanks again guys,
Ad

Ad,

You're amazing to be responding to each message with a thoughtful, upbeat message while you're in the middle of such a challenging situation!

I wonder if there's any way you can move forward on setting a surgery date now, in your surgeon's absence, so it can happen shortly after his return? Or do you need to wait for him to return before you can schedule?

I also want to mention a couple of other sites I came across when researching ileostomies that could provide additional feedback for you on your journey:
http://www.healingwell.com/com...ty/default.aspx?f=33
https://www.ostomy.org/forum/index.php

Thank you for asking how I'm doing. After having been told I had UC for 16 years, having j-pouch surgery about 14 years ago, and dealing with chronic (usually "simmering" and sometimes more flaring) pouchitis pretty much from day one of take-down, I was recently diagnosed with CD because mild/moderate inflammation has shown up in my duodenum and small bowel. Believe it or not, it was the first endosocopy I'd ever had and I'm convinced that I've had unexamined CD symptoms for years. I believe that my j-pouch is just an inflammation-generator that has never adapted to functioning as a "colon" and it needs to be removed. I'm getting lots of pressure from my GI to go on Remicade or Remicade + 6-MP, but I have serious concerns. I was really wanting to go to a perm ileo and now my GI is saying that, with the new diagnosis, the disease could show up elsewhere and I'd end up needing to be on the same drugs either way. I've been on prednisone for two months, which is buying me time at the expense of my bones, and have just tapered down to 20 mg/day. I feel great and am functioning very well but, if history repeats itself, I will need to make a decision here shortly as I continue to taper off. I'd like to at least try the approach of nonstop rotating antibiotics before I go to the big guns of Remicade, but my GI doesn't agree. My first choice would be to go to the perm ileo tomorrow if I had a good chance of achieving the success that many of the people on this site have experienced. So, I'm in the process of researching the success rate of a perm ileo with CD. I'm hearing quite a range of success rates and it's terribly hard to sort through and know what's what.

I thank you very much for asking and I will write if I have anything useful to contribute to your information-gathering. I wish you all the best.

Lynne

This message has been edited. Last edited by: L. Mac,

Thanks Lynne,

Yeah I have to see the surgeon first before a date can be set. He gave me his word that I could get a permanent ileo if things didn't improve in 6 months. I've tried the only things I could that don't involve surgery without success, so can only hope he can help me out.

quote:

I believe that my j-pouch is just an inflammation-generator that has never adapted to functioning as a "colon"

I fully believe that's what's happening to me too. I've developed eczema like marks on my stomach/chest just after surgery that aren't going away. Never had eczema in my life so...what is that, another coincidence maybe? lol My skin was in great condition when I had the temp end ileo. I also developed a swallowing problem after surgery last time too....makes tablet taking quite a challenge, and annoyingly slow.

I hope you at least get to see a colo-rectal surgeon for another opinion, as they bring another angle of thought to the table. Or as crazy as it sounds a third GI for another opinion on getting a permanent ileo with a crohns diagnosis. I find it hard to believe that a permanent end ileo(if successfully performed) would put you in a worse position than you're in now. You're one of the first people(if not the first person) that I know of who has been told a jpouch is better than a permanent ileo for a crohns diagnosis. Personally I don't think Remi long term is a solution at all.....that's the general vibe i've got going off people's personal accounts on various forums.

Hope you have some relief in the meantime while you're researching/thinking about your options.

Ad

P.S. Thanks for the links. I check healingwell quite a bit, but have never(that I recall) been to the ostomy.org forums, so thank you for that.

Ad,

Thank you so much for your advice and well wishes. I'll update the board if I learn anything useful along the way.

I'm keeping you in my thoughts and hoping you get to see your doctor soon. Please update us so we know how you're doing. I know I speak for others on here when I say that we care. We're a support group that can empathize with issues that our loved ones,despite the best of intentions, might not be able to understand.

How great is this that we can communicate around the world?!

Lynne

Had my surgeons appointment today, and it didn't go well.

This will be my last post on the topic for the time being....Sorry guys.

Ad

This message has been edited. Last edited by: Adroen,

I am so sorry that this is your last post. I have been thinking about you. I pray all goes well for you.

Talk about going nowhere fast.....

Since my last update, I've had another surgeon agree that I need to have the jpouch removed, but refuse to do the surgery, as he doesn't want to step on surgeon 1's toes..../shrug

If only they could experience what i'm experiencing. I'd have a perm ileo tommorrow.

Ad

I just couldn't sit by and watch someone suffer and do absolutely nothing if I had the skills to help them...It's illogical to me.

Sorry Adroen. I can't imagine a surgeon refusing to do the surgery for a stupid reason as "not wanting to step on surgeon 1's toes". What the heck is that?

I hope you get this resolved soon so you can finally feel better.

Well the latest.

1 step forward 2 steps back....

After spending a week in hospital(nothing happened until the day before surgery). Including being put through a humiliating test(you know the one)....and another test......and being forced to talk to a psychologist to prove i'm not crazy. Guess what....after all that.....the xray showed my pouch is useless after all, and will need to have around 15-20% removed to have a chance of working....So that might solve the emptying problem......might that is. There's still the crapping my pants in my sleep part.....burning in my anal canal....oh and if I lose 15-20% of the jpouch, increased toilet trips....lol. But was that enough to convince them that my request for a permanent ostomy was justified....no. We have to think about the jpouch remember..../sigh

The best I could get was a temporary end...and I had to take it, as the last 8 months have been hell, and I had to take the chance. I was reassured i'd have a good stoma. Unfortunately, my new stoma is not going to be put on the cover of stoma monthly anytime soon...or in other words isn't going to be easy to deal with by design. And now i'm getting cramps from the remaining jpouch, and seem to be expelling just a little too much mucous for my liking from it.

If anyone has a little too much luck, can you throw some my way please.

I'm still seeking a perm ileo. Have to heal from this surgery first. More surgery.....can I have a collective 'yay' for that please...

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