diversion colitis

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esoR
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Date Joined Jan 2007
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   Posted 7/5/2011 8:41 PM (GMT -6)   
Need input from those who still have their colon in them but have an ileostomy (long term or permanent.)

Due to irreparable rectal and colon injury in 2006, I had to have a permanent ileostomy in 2007. So far I had been fine with the periodic fleet-sized warm water enemas (no salt as that is irritating) to get out mucous from my rectum/colon. But when I did this the other day, (need to do this about once a month or once every 2 months) some sort of major irritation has started. I got the mucous out, but then had horrid cramps last night and today, tons of blood tinged mucous came out. When I have to have this suctioned out, sometimes my colon lining looks almost normal but other times it looks friable as in disuse colitis. I never had an issue with cramps before passing the mucous. Have had major issues now for 24 hours. I let the doc's office know and they said if it doesn't stop they would get me in.

I did some research and I did find an article that says cramping is possible with this benign common condition. It occurs due to lack of short chain fatty acids that usually nourish the inner lining of the colon. The remedy according to one article is short chain fatty acid enema's only 60 cc twice daily. Has anyone had experience with this?

So far so good with the ileostomy stoma itself and given the history of my original gut injury I'm lucky to still be here. BUT, I do need to address this. If anyone posts back, let me know if you had the cramping just before the expelling of bloody mucous or did your mucous come out without cramping? I'm the most concerned about that. I've always been a bit prone to slight bloaty feeling from some foods (yet don't actually look bloated), but I've never been prone to digestive cramps. (My concern is that before my ileo and lysis of adhesion surgery, I had multiple small bowel obstructions from adhesions, but these cramps aren't the same kind and so far ileostomy is working just fine and I feel fine otherwise.)

Thanks, Rosemary

pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 7/6/2011 6:17 PM (GMT -6)   
Just stumbeld over your post on one of my rare visitis here.

Anyway, I have diversion colitis in my rectal stump which contributes to the spasms. I's better now, but not gone. right after surgery, I got enemas with cortisone to treat the inflammation cause it was really bad. problem was that I could not expel the enema so my surgeon had to suck out the enema after some time in which the agent was absorbed.

Diversion colitis can be easily stated from biopsies obtained by an endoscopy.
My report cleary says diversion colitis. As you have your whole colon inside I guess the inflammation is worse and resemble much more a "true" colitis with blood etc.

hope this helps.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 7/6/2011 6:20 PM (GMT -6)   
oh yes, cramps are typical, at least for me. It's just my rectum which is spastic anyway but with the diversion colitis it was really bad.
inflammation typically leads to cramping pain, e.g. in chron's and UC.

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 7/6/2011 7:30 PM (GMT -6)   
Hi Peltz,

Thanks for visiting and responding to my post. Good to know the cramps are just from the diversion colitis. I will follow up with my surgeon as he would have to suction out the cortisone enema as I cannot expel it either due to my colon rectal injuries, reason for my ileo.

As I remember your code name from here, you are Sarah? I hope you are getting all your issues resolved. I remember they were very difficult but you were on top of them. I wish you so well and I thank you for responding to my post. Especially the having to have the enema solution suctioned back out as I know too much absorption of the steroid is not good for our bodies. Is that correct? Am I right on that being the reason your doc suctioned it out for you?

Thanks, Rosemary

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 7/6/2011 8:55 PM (GMT -6)   
Yes, I am Sarah. It has been a very difficult time for me in the last three months - I still struggle day by day.
The enemas were suctioned out as I could not stand the rectal spasms. My rectum is dysmotile either and anything in int worsens the situation. I dont think long absorption of the enema would do any harm, though.
if you like you could follow my struggel at my caringbridge site I created in the beginning of this year.
www.caringbridge.org/visit/cippelztier86

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 7/6/2011 9:38 PM (GMT -6)   
Hi Sarah, Good to have contact with you again. So sorry your problems are continuing.

Oh, I see, it was the spasms that made you have it suctioned out, not the steroid absorption.

Did you have to have ongoing treatments for awhile, or was it one steroid enema and that took care of the diversion colitis?

My rectal bleeding output episodes are letting up. Does that mean I don't need the steroid enema or would I be smart to get one? The nurse is checking with the surgeon about this. I would not mind a steroid enema. With all I've been through if I need it I would gladly get it. If you need it and don't get it can you go on into problems from not getting the diversion colitis treated?

I went to your site once before and could not get on. I will try again as I want to catch up with how you are doing. Tracy is in difficulty see the thread titled Not Doing Well.

Thanks for info, Rosemary

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 7/6/2011 10:00 PM (GMT -6)   
i had the enemas for 3months. every 14 days.

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 7/6/2011 10:21 PM (GMT -6)   
Oh, OK Sarah. Great. Thanks for the info. on the schedule. Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/7/2011 1:01 PM (GMT -6)   
Sarah,

If you are still checking in, my new ileo surgeon who took over for mine who retired emailed from AUstralia that I should do another warm water mucous enema! That is what triggered the whole diversion colitis thing in the first place. NO WAY am I doing what caused the issue. He said to soak in warm water. This does no good. The diversion colitis IS the cause of the spasms and cramping NOT the other way around. Oh, God, here we go again. I am at a loss. His nurse was very nice and I said what would you do if you were in my shoes and she said I could have him call you tomorrow. I said, that would be great. Rosemary

GutsyOne
New Member


Date Joined Jul 2011
Total Posts : 4
   Posted 7/10/2011 1:13 PM (GMT -6)   
Rosemary and others,

Check out http://www.uoaa.org -- General Discussions Forum. You'll see much info re diversion colitis, fatty acids, etc. Search "rectal stump" there. Unfortunately, most of the ostomates on the (terrific ostomy site) who've suffered from diversion colitis as a result of ostomy surgery recommend removal of the anorectal area which isn't small surgery and I've had enough! However, I'll admit, they're pleased w/ the results.

Due to pelvic floor syndrome and "non-relaxing puberactalis muscles," I had a sigmoid colostomy. After about 8 mos, the mucous started (only slightly bloody which is normal) but then the cramps. Recent trips to my surgeon resulted in prescriptions for Canasa suppositories and Rowasa enemas -- different forms of the same basic med. I can't see how a plain warm water enema would cause the condition -- ??? You might ask the doc for a rectal tube to withdraw the mucous but that doesn't help with the cramps. I just started taking emu capsules for inflammation -- we'll see!

I'm eager to learn what you all learn to ease this discomfort. Good luck!

GutsyOne

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 7/10/2011 3:03 PM (GMT -6)   
Thanks Gutsy One. I will check out the site and print out the suggestions. Rosemary

Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 11/3/2011 4:58 PM (GMT -6)   
Just stumbled upon this post.. and wondered if you have any suggestions?

I'm nearly 4 months post surgery for a permanent ileo (long story, started with diverticulitis, perforated colon, peritonitis, then reconnected, but developed colonic inertia, so had ileo put back) ANYWAY... I think I'm now developing symptoms of diversion colitis. I still have most of my colon but it's just stapled up and bypassed.

I'm now passing large formed lumps of mucus, hard to pass and starting to get spasmy pains and abdominal discomfort. I have no colonic motility, so passing the mucus is nearly impossible.

What do you suggest re: irrigation or enemas? have no idea about that so any advice/suggestions welcome. My surgeon mentioned this might be a possibility and said I'd need to have my colon removed and have a rectal stump if it got too bad. UGH! cannot face more surgery.

Aside from that I'm doing great!

Thanks Sarah
Sarah - 39 year old mum of 2 boys, runner/triathlete from UK
June/Oct 2010 - Peritonitis/perforated diverticulitis. Sigmoid colectomy, temp ileo then reversed.
DX Colonic dysmotility.
July 2011 - Permanent end Ileostomy after begging surgeon to put it back
Follow my blog - http://bagthatruns.blogspot.com/

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/3/2011 9:00 PM (GMT -6)   
Hi Sarah,

Just met with my ileo surgeon yesterday and have the 3 steps that he uses:

1. Anusol HC suppository steroid
2. Canasa Suppository anti inflammatory
3. Butyrate enema (short chain fatty acid) this is what our colon is lacking due to disuse.

I have my whole colon and rectum in permanent disuse. Usually have mucous suctioned out rectally every 6 months. usually despite all my colon rectal scarring i can get out what i need to with a warm water enemas in between suctionings. however this summer after i did an enema i had a week of active disuse colitis with severe low cramps and actual running to the bathroom to poop out blood and mucous that came out in actual liquid form. this was one week out of four years. i was terrified it would happen again. so far not but it can. so i asked what my surgeon would use on me if an episode never cleared on its own and these are the things he said they would use at his practice. Good luck. Rosemary

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 11/6/2011 5:09 PM (GMT -6)   
Ah.. that's great thanks Rosemary. I think I'll make an appointment to see my surgeon and see what he suggests. Just when I was hoping I'd never have to darken his door again! AGGHH!

Wish I'd pushed him to take it all out when he re-did the ileo. Grr.

Who does your suctioning??

Thanks Sarah
Sarah - 39 year old mum of 2 boys, runner/triathlete from UK
June/Oct 2010 - Peritonitis/perforated diverticulitis. Sigmoid colectomy, temp ileo then reversed.
DX Colonic dysmotility.
July 2011 - Permanent end Ileostomy after begging surgeon to put it back
Follow my blog - http://bagthatruns.blogspot.com/

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/6/2011 5:22 PM (GMT -6)   
My original ileo surgeon's replacement does it now. Original ileo doc retired. Any of these colorectal surgeons should be able to do a suctioning. It is just a slim sigmoidoscope that is put in a bit of a way. You can actually see the clots of mucous on the TV. They just spray a bit of water and suck them right out for you. Just think I have my whole colon and rectum to accumulate mucous; my ileo doc could not remove my colon at the time of the ileo as I was already in too much trouble with the small bowel scarring from the original surgery that lead me to need the lysis of adhesions and ileostomy Rosemary

smackie
Regular Member


Date Joined Feb 2011
Total Posts : 55
   Posted 11/8/2011 6:02 AM (GMT -6)   
When my surgeon did my recent scope he said it was all good except for some diversion colitis.

He commented that this was expected as the colon wasn't getting the nourishment it needed.

When I asked him what he meant he said my colon just needed a good meal of poo.
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