Iliostomy due to IBD. stump bleeds from chrons fix?

trying to catch the eye of someone stuck in the same boat as me.  long term IBD suffer (35 yrs)  went the oral meds route. the remicade route. steroid route.

was waiting f or humira route when a blood clot developed. twice within a year.  i was bleeding out for months. large intesting had to be rmoved and thus ostomy bag.

bleeding froma bowel movement they said was normal.  right. after two yrs?  enter a scopy and lo and behold stump/rectum has crohns.  and its no just mucus. its blood.  rabbit sized poo. mixed.  bright red.   ugly nasty right? normal? nope. so am considering rectum removal. i researched some posts here hoping to find answers but I think becuase chrons is invloved , my situation. my request is specific.  i was told sewing up the hole would still leak.. and there could be urinary issues later. I was never told prior to my surgery that i would still have bowel movments. nor was I told they would be this nasty. I am looing for some input from people with IBD here who have an iliostomy and a rectum that bleeds and what they did to fix it and had they had surgery, how successful was it? thanks in advance.

Wow.  I don't understand why you're still having bowel movements when you're disconnected.  Something is not right there.  How is that even possible?  If the rectum and anus has crohns, I can understand the bleeding and I probably would finish the removal.   Why it would leak afterward is another thing that shouldn't happen and that I don't understand.  We barbie butts do not leak.  I think I'd get another doctor and some answers.  I'm sorry I can't help you with the exact problem you're having, but none of it sounds right to me.  Hopefully someone else on the site has been through exactly what you are going through and can tell you what they did.  

My best wishes are with you that you find some answers. Dont give up.  The answers are out there.

My rectum was removed 7 years ago (but not completely) due imflammation and fistulas. I already had an ileostomy long before that. The rectum tissue that was left behind still produces slime which comes out from time to time. The reason part of the tissue was left behind is as far as I know because it's interwoven with nerves and blood vessels. There's (high) risk those might be damaged if you were to remove them completely.

Complications can be from becoming impotent, incontinent and having erection problems. Because of my still young age I've decided I can live with a bit of slime now and then for now. 

Those are all very much possible issues you have to be aware and take into consideration if you do decide on that removal surgery.

I can't comment on the bowel movement problem... No idea.

Hi again,

Yeah...The bowel movement makes no sense whatsoever to me. I would sure find out about that one.  I know that if part of the rectum and anus is still there, mucous can still be produced...and the crohns would explain the bleeding.

THey told me the same thing about the barbie/ken butt surgery because things are so close to the urinary tract, but problelms seem to be pretty rare.  I know lots of men on this site have had the surgery without any problems.  Hopefully, one of them will respond to your concerns.  Hang in there! 

warrior,

  I have to concur with withed and weird.  I've had an ileostomy for 24 years now due to Crohns, rectum/rectal stump still intact.  I was told the same thing as withed, that there was a 10% chance I would have issues with impotency and ED.  Being 23, I said don't remove it.  To this day, I don't regret the choice I made.

  I deal with the feeling that I have to have a bowel movement once in a while and I still have bleeding and mucus.  It doesn't feel great and stinks to high heaven.  Sometimes the blood/mucus congeals and forms black or brown chunks one could mistake for poo.  I'm guessing that is what is happening to you.  If your rectal stump is no longer connected, having a BM is not possible.  But the congealed blood/mucus is.

  I'll have an episode like this 1-2 times a month and it's manageable.  I'll wear panty liners to prevent stains in my underwear even though I'm a guy....lol.  I've been told I can do medicinal enema's or suppositories, but I don't like ANYTHING going in my a$s anymore.  I don't know if this is something you would or have considered.  The only reason I would take the route to have it removed would be if it was beyond painful or if cancer was involved.  Just my 2 cents.

 

Bain

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

you all are too kind. thank you for all the wonderful feedback so far. to explain better, by bowel movment (bm) I am talking about that litttle tingle u get when u know u have "to go" and u sit there waiting for discharge.  to me at least, if ur sitting on the throne waiting for some kind of discharge, to me thats a bm.  what else would u call it? an evacuation? a discharge? I can discharge/evac a little if i cough or sneeeze when standing...  but was that a bm? nope that was an accident. so I apologise for any misunderstanding using bm to show im discharging/evac, bleeding from the rectum which has been disconnected from the removed intestine.  but like  nj bain said, and u nailed it perfectly.   the brown chunks or as i see rabbit turd is what i think of as poop.   if there is anothe term or phase for this action, let me know and we shall be schooled properly.

So this must clear alot of misunderstanding.

the urinary issues are something to think about. mind you having a freaking bag hanging out of stomach is enough of a kill joy. now you cant get it up?  i have to answer the others, Bain u were last to reply. thanks man. we are same age i believe. and i found yur answers more enlightening than what my doctor told me.  let me get to the others.  hear form you soon.  abd thank u again.  now to the otheres....

Warrior,  Yes, what Bain and Withed said explains things.  Clearly a misunderstanding with the BM thing.   They gave you some great advice on possible ways to deal with things.   I knew people would come through for you.  There are a lot of neat people on this site who have been through it all.  I got some really great advice when I first got on here too, which I REALLY needed!   When you're new to this kind of stuff, you don't know anything...but you do eventually learn what works and what you can live with.  I'm sure you'll figure things out and come the right decision for you.   Cheers to you too!

I see, I call it an 'urge' myself instead of your bowel movement. I have it from time to time as well even though I've only ever pooped normal for a year in my life. (Had my full colon removed at 1 and 29 now.)

warrior,

  No worries man.  Just let us know how it goes.  Hopefully you don't have an issue with your rectum like I do.  The area is very constricted due to scarring.  Before I had the surgery, my poo was smaller than a cats.  I had a constriction there and in my decending colon.  Since waste wasn't passing as it should because of the constrictions, the surgery was suggested.  I was miserable before the surgery.

  So being pain free, bag to collect my poo and some blood and mucus out my a$s is far better than being in pain all the time, taking 5 different medications 3-4 times a day and potentially shxtting myself at any given notice.

  I do suggest you get a colonoscopy or sigmoidoscopy every year or so just to make sure nothing bad is going on there.  Another thought came to mind writing this.  I know some people pack guaze in their wounds and some even in their rectum to prevent messes.  I'm wondering if anyone has ever tried to use a tampon to soak up the blood and mucus?  Any thoughts?  I'd try this myself but unfortunately, my rectum is no bigger than the circumference of a pencil.  Lucky me.  I define the word tight a$s...lol

Bain

Unfortunately I can't really go without panty liners and I've thought of that as well but I'm a tight ass like you. Usually when I ride my motorcycle for a lengthy time I stuff in non-woven swab as an extra. The slime that still comes out doesn't go well with warmth and it can get quite warm sitting in motorcycle jeans/leather. By putting a swab up there I can spend a day not having to worry about it. 

Hi Bain had my surgery February 28,2019

Hey Rider!  Glad you're still around man.  NYBLUE and I were getting worried about you.  Glad you went forward with the surgery.  How are you handling it?

 

@ withed,

  I hear ya.  I don't have it all the time.  But yeah, when I'm riding, I usually use the liners as well just to be sure.  What are you riding?  If you saw my pics, I have a 2003 Yamaha R1.  Just took her out for the first time this year last weekend.

Bain

Sweet! I ride a 2003 Kawasaki ZX-12 and a Honda chopper on the side. I like the grey colour scheme, not a fan of the usual Yamaha blue.

Bikers with butt issues. Imagine that on the back of leather jacket? ha ha. Just chiming in. It's been awhile. Havent driven the bike much in the last 2 or 3 yrs. Its a honda 1200 ACE spirit. Started looking for saddle bags for this but haven't found  anything affordable or fitted.  anyhow, Bain, you're from Jersey and you ride. What issue do u find on long trips? I need to prepare I guess. Iron butt? hardly.  have a safe summer. 

@warrior,

 

  I don't do much in preparation for a ride.  But then again, I don't ride for more than 8 hours.  When I do a day ride, I just stop every few hours to check things, dump the pouch if need be, usually when I stop to eat.

  Also, I have a very light breakfast so I know the pouch won't be filling up anytime soon.  Once I eat, I know I have about 4 or 5 hours before I see any output.  So maybe time your output depending on what type of ostomy you have.  Hope this helps.

 

Bain

cool. Sounds about right. Just like driving a car..important to know your output timing. Thanks. .

great info. Great advice. No judgenents. Real life answers. I plan to get back to riding the motorcycle asap. Haven't been riding in long  time. I guess my leakage isn't as bad as I thought. Altho not riding inc3 yrs post op, I can't say... My leakage at night while sleeping, has stopped...i now sense when urge comes, I definitely HAVE TO GO! Then... Dont put that urge off. Nope. Adjustments. Daily..routinely. The steriod   is ucleris. I have to credit it. Dont enjoy the procedure but its the most direct way. Think enema style. Once in back riding ill report. Thanks guys..keep chin up, bag down or sideways, whatever works...,cheers.

update. feels good to ride again. damn bumps in road suck. really shake your ass up.. or in this case, your bag. have belt, will travel. zoom zoom. :)