MAJOR bowel problems after Illiostomy reversal...NEED HELP PLEASE!!!!

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sudeha
New Member


Date Joined May 2011
Total Posts : 7
   Posted 5/19/2011 6:49 AM (GMT -6)   
Hello
I am brand new to this forum and need some serious help. Where do i begin? diagnosed Sept, 2010 Rectal tumor, 5 weeks chemo & radiation, Dec. 10th 2010 6- 1/2 hour surgery, not a trace of tumor there!!! had a foot of my large intestine removed and my entire rectum taken out and given a temporary illiostomy. had major problems with illiostomy and my doctor reversed it 2 1/2 months later. but when she went to do this found massive amount of scar tissue that had grown in just 2 months that was hard as cement and wrapped all around my small bowels and bladder. turned out to be a major 7 1/2 hour surgery. great news is i was declared 100% cancer free in January 2011!!
Now here is what i desperately need help with. I am having severe bowel problems flip flopping every day 24 hours a day (NO exaggeration!) between massive diarrhea and then going into awful constipation with the stool that has the most awful burning acid in it trying to come out but can't. I am on the brat diet, taking lomotil, immodium, ativan for the awful anal spasms,and diladid for the pain. I am doing psyllium just 2 tsp. when i eat in a little bit of water like 2-3 oz of water. I can never ever ever sleep at night because i am either on the toilet with diarrhea or lying in bed with the most awful burning pain of my stool trying to come out but can't. my big question is that its getting worse and worse. what causes this acid burn in the stool. I don't know of anything to help with this because it up inside my anus. I have abut 10 different creams and ointments of every sort but can ONLY keep it on for an average of 2-3 minutes before i am running to the bathroom again. The best ointment i found is called Critic Aid either thick barrier cream or clear barrier cream by Coloplast. i have a bidet thank God and use warm wash cloths to sooth my anal area after i clean up. This is an awful awful horrible cycle that i cannot seem to break. I eat NO vegetables and no fruit accept banana's. i eat avocados, use probiotics and enzymes. its been 3 1/2 months since my illiostomy reversal and i know my doctor says it can take 8-12 months minimum for my bowels to relearn how to absorb more water. Without having a rectum, i will never be normal but my bowels she says will start to form a bit better. I have completely lost hope and patience because this insidious daily 24 hour cycle consumes me. and no i do not want to go through life with a permanent colostomy. Every now and then i am graced with a 2-3 hour time period where i do not have to go to the bathroom or have pain but that does not happen all the time. i had one good day in all this time and i took 1 lomotil every 6 hours on the clock but still that does not always work. I think i am getting clogged up when i take the lomotil and then i really need to take the pain med because i am in way too much pain to stand it and maybe the two together dried me up too much and causes the awful constipation. Has anyone gone through this and please share with me what you did to help yourself. I am at my wits end.

Thank you in advance to anyone who can help me.

Post Edited (sudeha) : 5/19/2011 5:52:55 AM (GMT-6)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/20/2011 7:18 PM (GMT -6)   
Pain meds can cause constipation. Have you tried going a few days without any medication to see how your body does? I know it won't be easy but you may get a better idea as to how your body is really adjusting.

I could be wrong, but I understood the rectum's job as more of a 'holding' place. The majority of the water is absorbed before it gets to that portion.

Have you thought about a second opinion? Some people do experience complications with radiation in that area...it might be in your best interest to have another doctor's opinion on your situation.

Welcome to the forum, too! Sorry, I don't have first hand knowledge but someone should be along.
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

sudeha
New Member


Date Joined May 2011
Total Posts : 7
   Posted 5/21/2011 12:28 AM (GMT -6)   
Yes i did try to go without any meds to see where i was and it was a disaster. took me 3 days to get back on track. I have pure liquid stool without meds, i for sure need them. I did just find out that the intense burning up inside is from the bile and my doctor prescribed this powdered stuff you mis with water and drink and in one day it took 80% of the burn away. Thanks for your reply, i really appreciate it!!

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 5/21/2011 7:01 PM (GMT -6)   
I read where several people have had total relief from the awful rectal burning and diarrhea when they started taking a medication called Cholestyramine. Have you tried this yet?
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

sudeha
New Member


Date Joined May 2011
Total Posts : 7
   Posted 5/21/2011 7:22 PM (GMT -6)   
Hi there

YES!! I JUST got this yesterday and after one packet in water of this stuff it is just starting to take the burn away. Wow i wish i knew of this sooner. i have been suffering for 2 months daily with the awful burning. Thanks so much

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 5/21/2011 9:26 PM (GMT -6)   
Sudeha, I am so glad that med is working to help you. Has it helped with the diarrhea too? One lady posted about it on the IBS forum and swears that it gave her her life back after years of uncontrollable diarrhea and rectal burning.
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

sudeha
New Member


Date Joined May 2011
Total Posts : 7
   Posted 5/22/2011 1:11 AM (GMT -6)   
I pray I pray I pray this will be my outcome for me because seriously it is way too hard day by day to live in such pain and every single night all night being sleepless. I am only on day two of taking this stuff. i did learn today that is also works to dry up the diarrhea and not just stop the burning so i had also taken my Lomotil so i went super dry today which also cause horrible awful pain for me. so now i will take two packets of this stuff. Once in the AM and once at dinner time and do less lomotil and my other anti diarrhea meds. It is such a huge trail and error 24/7 job and i am beyond exhausted after months of this, its just way too hard and i have had NO life outside my home. in the last few days i have given up all hope that this would ever change. I have been so strong for so long but just lost in the other day. so now i am the tiniest bit of hope that this powder stuff will help me and give me some sort of a more normal life. we will see.. there is no in person support group here where I live and of anything that needs support..this does in a big way. because we have the surgeries and go through the treatments and then are sort of left on our own to figure things out and its just awful. i have wonderful doctors but really all they can do is try another drug but its up to us to figure out what to eat or not, when to take the meds, how often etc.. so I am so grateful for this forum and for you sharing with me. too hard to go through this alone. and my wonderful family and friends feel awful they can do nothing to help me. so thank you so much for sharing.
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