Ileostomy and Ongoing UC Symptoms: Seeking Advice and Support

Just over a month since my perm ileostomy. Have had moderate to heavy anal discharge and thought it was the rectum healing/weeping (surgeon left a rectal stump) or an infection.



Saw surgeon last week ... he's saying it's the UC in what's left of the rectum

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I see my GI specialist tomorrow.



Darn - I still have to use a heavy menstrual pad and am back on the Salofalk suppositories. And I'll still have the unpredicatbility of flares. Pre-op, my flares were months long.



I was SO stoked that my UC would be a thing of the past.



Of course I asked why he left/made a stump? .... Here are the reasons I was given:

- apparently so that there would be the possibility having the pouch operation (although he said prior to surgery that he would not recommend this for me- so huh?)

- removing the rectum would add significant time to the surgery and I was in bad shape physically (emerg surgery) and they preferred to keep the surgery time to a minimum

- the rectum removal can result in more post-surgery complications -- it's a more complicated surgery as well (dealing with pelvic floor, etc.)



Anyone else have this happen? I know it's not the end of the world, but some reason this is really upsetting me ...



Thanks - I needed to vent.

You vent away hun... will do you the world of good! Not my field really so can't advise - though my previous surgeons at the last clinic visit were asking me to think about whether or not to have a permanent ileo or colostomy and whether or not I wanted to have my rectum removed - and that was before they do the fistula repair; so hard to be positive when you have that negativity about it not working from the surgeons before they even start! My new surgeon was much more positive about stuff... anyway, I need to know what the pros and cons re rectum removal are just in case .....



I can understand that it does feel like the end of the world actually .... you expect to go through all that and feel better at the end of it, been there too...



Hugs



Rachel xxx

Hi Beatrice



Sorry to here about the flares.   I can understand your frustration thinking the UC was over and now this.  



Often when UC flares badly, it can be an urgent or emergency procedure to remove the offending colon, wait and see how the rectum fares in terms of more disease or not.  I think your surgeon gave you valid reasons for sparing it at the time.  Lots of folks are so ill at the time, it can be a risky and long surgery with complications for healing if the rectum is  removed at the same time.  If you were on steroids to boot, further issues ofor healing.  Many folks do want the option of a J pouch also.  Even if you didn't, it sounds like your surgeon was doing what was best given your health picture at the time.



Please do see your GI specialist.  Hopefully there can be some control of the stump flare.  I would expect that once you are stronger they would be considering removing the rectum.  Not fun to contemplate another surgery, but neither are the flares and other consequences of a diseased stump.



Hang in there.  Hard as it is, it sounds to me like you have a good team of physicians on your side.

Beatrice,



     Having suffered with UC for 24 years and having the worst BM,s and rectum urgency issues,  the very thought of leaving it in scares me to death..............Now  why the doctors leave it in is exactly as you say.....................Doctors always think it s  better to leave in just in case you want to go back......................In my case I never want to go back ..I love my Ostomy..............The complication regarding surgery is true too...it s a complicated surgery and requires a rather lengthy healing time.............and as far as pelvic floor too that is a concern,  but Here is my advice............Once you are healthy and feeling good physically and you want that rectum removed,  go see a surgeion who is confident and can do a good job with regard to the surgery..............IM SO HAPPY TO NOT HAVE MY RECTUM I COULD SCREAM IT TO THE WORLD.................No more issues ever with stuff coming out of my rectum   YAHOOOOOOOOOOOOOOOOOO...........I feel so good physically I cant comprehend it yet because i was sick for  what semed to be my whole life.......

  What doctors dont understand is  that when  a rectum doesnt function well or right it affects the patient so terribly but they believe its better to have it than remove it.  I say remove the friggin thing because the patient suffers with a non working rectum with disharge and urgency feelings....NO colon, no rectum, no anus.....................and one very Happy Osotmate........Michael

Thanks all - I've relaxed a bit (for now) about the issue. .



beyondpar -- like you I was at the end of my rope with the flares and rectum issues -- I really thought that nothing would be coming out that end after my operation.  I also want to scream to the world that my ostomy is a huge relief after the years of pain, poos, meds and such. I am feeling the best I've felt in so long ... except for the rectal 'emissions'. If I can get that resolved ... look out

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world!



Whoa -- thanks for the encouragement. And yes, I am lucky to have a good medical team on my side. But I do not want another surgery. I have probs with anaesthic/pain control ... I'll do what it takes to make another surgery my last option.



Lottagelady -- I'll definitely pass on what I learn about rectum removal.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Beatrice, I too have a rectal stump and also went through the same, left due to emergency surgery, however my consultant did say that he would try to give me alternative treatment, to see if he could heal the stump in a hope of avoiding having the stump removed , as you stated due to pelvic floor muscle disruption and possible bladder problems and erectional problems. but to no avail and so I'm due the operation this year when I've lost some weight, and I have a little problem of pyaderma infection round my hole. So I do sympathise with everything you say and the problems you have been through if you wish to chat about it e-mail me. Good luck



Paul

Hi Paul - you know exactly what I'm talking about/feeling! Sorry to hear that the alternative treatments didn't work for you

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.  Would you mind telling me what they were?



Did you ever feel that you could just put up with what was happening with the stump and not choose the surgery route?



I looked at your profile and see that you work in construction ... if your bum output is anything like mine these days, ... I can see you visiting the port-a-potty many times a day

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- pad or no pad.



p.s. was going to private message you ... but I'm not a full member yet

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- must sign up

Hi Beatrice,

well the short and tall of it all was when i developed  necrotising faciatus (flesh eating bug disease) due to a fistula track, caused by chrons.

I had an abscess the size of a grapefruit which got infected, so they created a loop to prevent waste going to my bum area, this was then treated with an infusion called infliximab which i believe was developed for arthritis, but the effects on UC and chrons is good but it didn't work for me, the idea was to remove my large intestine to which i didn't know about the stump idea until after the operation, they then tried treating me again with infliximab to try and quell the inflammation and hopefully reconnect, but as i still have an abscess on my stump which they can't seem to get rid of and what with excess still coming out, even though I've no large intestine, they have now decided to remove my stump and hole and rebuild my a*@e the six million dollar man style (LOL). So no double bum cheeks for me any more i reckon my bum will look like Dan Akroyds' in the movie the Coneheads

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Anyway anything more I can help with just ask I too am a non member Paul Roberts from leeds England  (koobecaf)

I just have to say, y'all are amazing, brave, awesome people.  

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Hannah

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Why thank u Txgirl, just remember your fantastic too coz we all suffer here and you got to believe in yourself, i do, i believe in you all, for if it weren't for reading other peoples problems I would drown in my own self sorrow, but hearing others like myself fills me with confidence to forge ahead.



thanks Tx girl

Paul

[quote="pghjr"]

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Why thank u Txgirl, just remember your fantastic too coz we all suffer here and you got to believe in yourself, i do, i believe in you all, for if it weren't for reading other peoples problems I would drown in my own self sorrow, but hearing others like myself fills me with confidence to forge ahead.



I agree Paul, if it weren't for you all being here, I would feel very, very alone.



It sounds Paul as though you've had a really rough time of it, I hope you feel better soon - you too Hannah as I know things aren't so good with you today also.



Lots of love 'n hugs, Rachel xx

Paul~ I agree 110%. When I read of everyone's trouble, it makes mine seem so small. I know it's not small but I guess it makes me feel so "not alone". Thank you for the nice comment.

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Rachel~ Thanks so much honey. I so appreciate your support. You are a wonderful friend.



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I am so grateful that I came across this site. I have met the most amazing people and gotten such great advice, tips, etc. too.

I have such admirartion & respect for you all, I love you.



Hannah

Echoing your thoughts, Hannah -- I feel like I have a family of friends here who truly understand.



Paul - my troubles pale in comparison. I'm sending hugs your way. What a good attitude you have.



p.s. saw my GI yesterday ... still have a bad UC flare in my rectum. Now on a higher dosage of Salofalk suppositories and have a corti-steroidal foam to use if I don't see improvement in a few weeks. He said that UC flares in the rectum (after ostomy) can be particularly stubborn and slow to 'cure'. Testing my stool for C-Diff (which I had prior to surgery) and anal discharge (for C-Diff and infection).



Take care all.

Beatrice~ send you warm thoughts & big {{hugs}}...I hope all goes well.

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Beatrice, I went through the same after I got my ileo and had not expected to experience the UC as I had before, so I was disheartened and disappointed when I realized that this too would be ongoing (apart from two doses of steroids, after which I ended up with blood clots on both lungs
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, my UC was severe and constant for 3 years as meds didn't work for me) and I got very ill again, with almost the same intensity as having pancolitis. I also didn't want another op - especially not this one as the thought of having a "Barbie butt" made me cringe and feel sad, angry, freaked out, etc. I also always get nausea and sickness with anesthetic or drugs, which makes things more uncomfortable. I had to postpone my decision for several months, as my mum was diagnosed with cancer and I was fortunate to be able to care for her at that time and get her through her treatment, but then my symptoms stepped up and I had a very bad 6 months while waiting for surgery - pain, bleeding, nausea, and vomiting daily, plus 5-7 trips to the loo just to pass mucus. Day in, day out, until I had a completion proctectomy on 30th Sept 2009. I ended up in the hospital for 3 weeks but the actual op was successful, I was just unfortunate to develop some complications (internal bleeding and then abscesses) which almost took me out, but getting rid of the UC was the best thing I did! It's done its absolute best to get rid of me. I feel well for the first time in 3 years and it's wonderful! I'm free of it at last and also free of the worry of long-term risks. Before, I always felt like I was running on half a tank to empty. Besides, I wasn't using that part of my body anyway, except to harbor this disease, and so I don't miss it at all. Or the meds!
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I was existing with UC. Now I feel alive again.
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I do understand your feelings, fears, and concerns. I too was holding out in hopes that I could maybe manage without the op, until I was no longer able to. It wasn't what I wanted, but I did what I needed to do. I wish you well and the strength and courage to do whatever it is you need to do. x

Thanks for your thoughts.  A Barbie Butt may be in my future. Right now I'm holding on to the hope that the meds will send this flare into remission. Then I can catch my breath and decide what's in my future.



I want one trip to Hawaii for snorkeling before I'm in the hospital again.  You know ... priorities

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All the best.

Beatrice, I hope you get your wish and that the meds beat it into submission or better still, knock it out for the count!

Oh yes, priorities. Hospital can wait if you can. hehe

Wishing you well. x

I'm kind of reviving this thread as I am going through a similar issue, and was given the same reasons by my surgeon as to why the rectal stump was left.



I am now 4 weeks out from my ostomy surgery and I have daily discharge from my rectum. Most of the time it is a light pink with some material in it, and as I become more active on my feet, the frequency increases. However I have also had a few episodes of hemmoraging where I have lost significant amounts of blood which have required a transfusion on two occasions. This seems to coincide with my taper down steps on Prednesone. I have seen my GI specialist and he says it is just going to take time before my body realizes that it doesn't need to function down there anymore.



I guess I'm just frustrated because the whole Ostomy thing is already a life changing event and I just want to move on. Yet here I am still dealing with at least one UC issue that I had prior to the surgery. I can live with the bag...I don't want to be reconnected...I want my anus to cease all operations.



I'm wondering if Beatrice is still on here and how she is doing 1.5 years later. Has the discharge stopped? Did you have surgery and get a "Barbie Butt"?



Thanks,

Aaron

I had my rectum removed 12 years ago, as the UC just didnt go away.



In fact it got worse over the year or so I had it, culminating in me having several uncontrolled bleeds, and having to spend each day in constant pain.



So I had it taken out, took me about 2 months to recover and have never looked back.



Until recently.



I had a groin hernia op in late June, and two weeks after this surgery, my rectal scar tissue started to itch, started to feel sore, and cold even. I can feel wind and stuff against it sometimes, it seems to be worse when I am standing for a long time, and walking. Seems there is a piece of tissue that is being stretched in a funny way, yet there are not real outward signs of any soreness. Twinges when I sit down, and sometimes seems to work in sync with my stoma. I still have some little skin webs there which pull sometimes too. Its worse when I sidestep or climb stairs. Gets worse at the end of the day too.



But the funny thing is, I am getting odd feelings of abdominal pressure against my lower back when I sit down sometimes, maybe its pressure on a nerve somewhere. It goes off when I drink alcohol too.



Been referred for an MRI scan in a couple of weeks, so maybe they can suggest something.



They are scanning me for a hernia there, though the consultant said that it was highly unlikely.



Very annoying though, especially this long after my original surgery. I reckon it has to be linked to the routine op I had in June.



I'd say though that having my rectum removed was a good thing, and I'm sure that you wont have the odd problem I have got at the moment.

Hi all!



Yes, I'm still here ... with my rectal stump. My surgery was scheduled for Sept 2 ... I got bumped but am waiting for a call any day now to set a date for early Oct.



mtnbiker72 - that is exactly how I felt after my ileo ... ok, got a bag, let's move on. But the UC and other probs with the rectum kept me in the mindframe where I was still thinking/feeling unwell. In fact, with the UC I did have remissions where I felt great and actually forgot about bodily functions

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. Haven't even felt that way for close to a year. Pads, blood, discharge, pain.







So still wanting my Barbie Butt. Yes, I know that it's not necessarily going to be a perfect "end" to my lifelong autoimmune/gastro problems. But it WILL be the end of the rectum and possible cancer starting there. Hopefully, it will be the beginning of a something good.







Will keep in touch. And don't hesitate to ask me questions. Got SO much good information from my hospital pre-admission appointments. The biggest 'aha' moment was when it was explained to me that with any autoimmune disease (like UC) ... you can get rid of the parts where the disease manifests itself (wrecked colon, pain in the a$$ rectum) ... but the overall auto immune disorder can still be there in the body. This revelation (why did no one explain this to me over almost 30 years) came out when I said that I hoped I'd no longer feel achey, tired, joints sore, etc.







Really, the only thing that a rectum removal can guarantee is that you will not get diseases like cancer in the rectum - because it's not there anymore. With bowel/rectal cancer in my immediate family - that's worth going for.







All the best,



Beatrice

Beatrice,



How did your surgery go last October. I am seeing my surgeon on Wednesday to get scheduled for stump removal. I got better for many months and was able to start doing all my fun activities again only to have my stump flare up in late January. Now anytime I do strenuous activities I get discharge within and hour. I am now back to being anemic which sucks.



I am hoping to get it all taken care of soon. I would love to hear about recovery time and complications (if any).



-Aaron

Hi Aaron!



It went very well for me (ileo Dec 09, stumpy gone Nov 11) -- have written about it on other threads ... can't think where right now.



The surgeon did the op lapariscopically. Not many surgeons do it this way. Because of this, the recovery a breeze - compared to the conventional surgery.



Do you know the specifics of your surgery?



I was sitting no problem right after the surgery (because they didn't go in from the butt end). I was in hosp for only 2 nights. They wanted to keep me an extra night, but there was C-Diff on the floor and I wanted out! Been there done that - didn't want to take a chance on catching it.



Teeny tiny incisions on my belly.



Haven't had a problem with that end since the operation

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  It is amazing to me how freeing and wonderful it is to not have to wear a pad. I had been wearing a pad for the majority of the last 10 years solid. On and off before then since my late teens. Seems like a little thing, but it just feels wonderful.



Every now and then I get a little 'twinge'. And sometimes a little almost phantom ache (very mild). Both high up in the bum. Doc said that's common - no worries.



What a relief to be without that little stump!



Interesting - I'm experiencing a 'flare' right now. I had heard/read/discussed that with Ulcerative Colitis ... you can experience the non-bowel symptoms even after a ilesotomy (the auto-immune disease can still be active). And I am ... sore joints, creaky, flakey skin, low energy. The same things (and in the same intensity) as I experienced when I still had my bowel.



But I don't care - those things I can easily cope with ... the major problems (bowel and butt) are gone

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Hope it goes well for you. If you have any more questions, just ask.

I am in the same position as you, had an ilieostomy in July due to severe Ulcerative Colitis,the rectal stump was left,but still having discharge and bleeding,have just been back for yet another scope and they now tell me that there is still severe uc in rectal stump and as medication hasnt worked for me in the past there is no point in putting off the inevitable operation..not looking forward to that.as I have had a lot of problems regarding infections since my op.