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disuse colitiis/ what do to now??

Posts: 106
Joined: Nov 2004

Hello everyone. Even though I do not post as often I do read the messages. I feel as though everyone here is family and my heart goes out to each and everyone of you. To briefly update I was dx. with CA/COLON AUG. 2003. 8/20 lymph nodes positive. Right colon and terminal ileum removed left with an illeostomy on the right side. Part of the colon disconnected on the left side. Sigmoid colon removed. Rectum closed off with a hartmann pouch. Recent petscan in July 2003 as well as MRI's of abdomen and MRCP of bile ducts due to elevated pancreatic enzymes have been normal Thank God. Now left with MDS (myloid dysplastic syndrome) which is the pelvic bone marrow is now working properly possibly due to pelvic radiation. I am tranfusion dependent every 6- 8 weeks and have developed iron-overload from the transfusions. I now have developed severe lower back spasms which phsyicians feel it is muscular/skeletal because of the weakened muscles in the abdominal area. Also I have osteoporosis of the lower spine and tend to get insufficiency fractures in the right pelvic area as that is where the radiation was mostly targeted. Since the operation I have developed this disuse colitis in the rectum as well as the draining mucous fistula which is actually part of the disconncected colon. The GI Dr. calls it disuse colitis and that is all he says. I now placed a call to the surgeon in Manhattan and scheduled an appt. to discuss what to do with this rectum and remaining part of the colon. I am betwixed and between of going thru an operation now to re-connect in 2 areas at the same time. Surgeon will not know until he goes in how much damage has been done by the radiation. Also I have had previous surgeries before this cancer dx. for severe endometriosis in which I have received a total hysterectomy in 1999 and back then the surgeon stated the scar tissue was like drilling thru cement. So with all this in mind and now this disuse colitis which is bloody at times I am thinking of removing the remaining part of the rectum and colon. Not too sure until I see the Dr.
in Manhattan. I think I can handle living w/an illesotomy as opposed to facing the consequences of a double re-connection and not healing properly
due to much scar tissue which I already had. I also had many complications after the first surgery including being re-opened up 3 weeks after colon operation for adhesions. Then developed DVT and pulmonary embolisms. The tought of surgery right now scares the hell out of me.
I do know from this site many of you out there had reversals. Any advise would be appreciated. I do use the Shaz's ostomy support group site as well. Your friend Fran from Long Island

KathiM's picture
Posts: 8077
Joined: Aug 2005

Oh, Fran....not from personal experience, but I do know that my beau's cousin lost his entire colon to chrone's (sp?) disease. He has had an illiostomy for years now, and it does NOT get in his way of traveling to remote China, and some third world countries. He and I compare notes on active bacteria stuff to help digestion, etc...but this guy is just amazing! Attitude is a BIG factor...HE thinks I have the harder challenge!!!!

I can speak only from the aspect of osteoporosis, because that was one of my gifts from the beast. I am now on Actonel to increase the density. AND, I have found a number of calcium-rich foods (my treatment made me lactose intollerant) that really helps.

One more thing my friend from above shared with me...."You know, Kathi, I fought so long against losing my colon, I was miserable most of the time. The difference in the quality of my life is huge now...I feel like I can get on with it".

Just one bear's point of view....

Hugs, Kathi

Kanort's picture
Posts: 1275
Joined: Jan 2004

Hi Fran,

I have no words of wisdom, but just wanted to say you have had more than your share of challenges. I am so glad that the pancreatic enzymes are now normal. I remember what a scary time that was when they were so elevated. I know that your final decision will be made with a lot of thought as well as information.
Sending you my best.



Posts: 156
Joined: Mar 2006

hi fran,
although i have not been thro your same experience, i do have a permanant colostomy. life is not as bad as i envisioned and i can honestly say that my life is not that much different. removing the rectum would certainly cure the behind problems. dont get me wrong this is not a piece of cake surgery, the recovery time is weeks, but after all you have been thru im sure you can handle it. good luck with your decision. take care, cherri

ron50's picture
Posts: 1722
Joined: Nov 2001

Hi Fran,
Think of the positives mate.We know more about the human digestive system than most doctors(even the ones treating us).We also know bigger words than most academics and we can spell them . Yep that is about it. This disease breaks my heart especially when it picks on my dear friends. Everything that they do to us causes two other problems and if you don't do it and have problems you get an "I told you so". It really is survival after cancer because it bears no resemblance to normal life. Pity there are no immunity awards you could sure do with one.
you really are amazing Fran ,no matter what happens you just don't give up. I don't think that I could have handled it as well as you.I've said it before you are a rock. What medicine can't give you I hope that the people on this board can ,a bit of hope and the willingness to endure against horrific odds.If we could distil the love and empathy from this group ,we would have our cure for cancer. A big hug for you Fran as always I wish you well,your friend.Ron.

Moesimo's picture
Posts: 1080
Joined: Aug 2003

I also have diuse colitis, but it is manageable by wearing a pad.


jerseysue's picture
Posts: 626
Joined: Oct 2005

Have you talked with anyone about getting a J pouch? That is where they remove the entire colon and instead of the colostomy bags you have a little pouch inside of you. Most of your bathroom experiences would be "runny" and not hard anymore. Just a thought instead of having a bag all the time.

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