new here, having problems after ileostomy reversal

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new here, having problems after ileostomy reversal

by Ruth_Ann on Mon Jun 11, 2007 12:00 AM

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Hi I am new to this site. I was diagnosed with rectal cancer Stage II in Mar. 06. I had chemo and radiation prior to surgery in Aug. 06. This last March I had my temp ileostomy reversed. Since the reversal I have had a lot of problems. I am having lots of pain during bm's and blood on tissue. Went to see the doc and he at first said it was an anal fissure, but then two weeks later he said it was just complications from the radiation treatments. Has anyone else ever experienced this and what was your solution to it? I am on 2 antibiotics and hydrocortisone cream for the anus area. Thanks, Ruth

RE: new here, having problems after ileostomy reversal

by Thankful on Fri Jun 22, 2007 12:00 AM

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On 6/11/2007 Ruth Ann wrote:

Hi I am new to this site. I was diagnosed with rectal cancer Stage II in Mar. 06. I had chemo and radiation prior to surgery in Aug. 06. This last March I had my temp ileostomy reversed. Since the reversal I have had a lot of problems. I am having lots of pain during bm's and blood on tissue. Went to see the doc and he at first said it was an anal fissure, but then two weeks later he said it was just complications from the radiation treatments. Has anyone else ever experienced this and what was your solution to it? I am on 2 antibiotics and hydrocortisone cream for the anus area. Thanks, Ruth

I am new to this site as well.  I am 8 weeks into an illeostomy reversal, and having problems.  It all started a year ago, when I was having problems, blood, urge to have a bm but nothing came out.  I finally had a colonoscopy done and the doc said there was a tumor there.  I go in for surgery, expecting the tumor to be removed, but it was rectal cancer, which is best treated with radiation and chemo to shrink it before they try to remove it. So they put in a colostomy, left the tumor, and sewed me up.  A week later I had to have the colostomy fixed as it had gone necrotic, and so then I was given an illeostomy, on my right side.  After weeks of radiation and chemo, I had surgery to remove the tumor and all was well.  Then I had to have four more months chemo to make sure they got all the cells.  Finally I had the reversal surgery, 10 months after the first surgery.  I find I go to the bathroom a lot, and only small pieces come out.  My butt burns like hell.  I don't know if I should be taking stool softeners, or fibre, or what. Maybe my stool will always be like this?  I don't think the docs have the answers - so I"m looking to people who have had this surgery.  Do we every really get back to normal?  Will I every know if its going to be a fart or a poop?

 

RE: new here, having problems after ileostomy reversal

by Carole_Anne on Wed Sep 19, 2007 12:00 AM

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On 6/22/2007 Thankful wrote:

 

On 6/11/2007 Ruth Ann wrote:

Hi I am new to this site. I was diagnosed with rectal cancer Stage II in Mar. 06. I had chemo and radiation prior to surgery in Aug. 06. This last March I had my temp ileostomy reversed. Since the reversal I have had a lot of problems. I am having lots of pain during bm's and blood on tissue. Went to see the doc and he at first said it was an anal fissure, but then two weeks later he said it was just complications from the radiation treatments. Has anyone else ever experienced this and what was your solution to it? I am on 2 antibiotics and hydrocortisone cream for the anus area. Thanks, Ruth

I am new to this site as well.  I am 8 weeks into an illeostomy reversal, and having problems.  It all started a year ago, when I was having problems, blood, urge to have a bm but nothing came out.  I finally had a colonoscopy done and the doc said there was a tumor there.  I go in for surgery, expecting the tumor to be removed, but it was rectal cancer, which is best treated with radiation and chemo to shrink it before they try to remove it. So they put in a colostomy, left the tumor, and sewed me up.  A week later I had to have the colostomy fixed as it had gone necrotic, and so then I was given an illeostomy, on my right side.  After weeks of radiation and chemo, I had surgery to remove the tumor and all was well.  Then I had to have four more months chemo to make sure they got all the cells.  Finally I had the reversal surgery, 10 months after the first surgery.  I find I go to the bathroom a lot, and only small pieces come out.  My butt burns like hell.  I don't know if I should be taking stool softeners, or fibre, or what. Maybe my stool will always be like this?  I don't think the docs have the answers - so I"m looking to people who have had this surgery.  Do we every really get back to normal?  Will I every know if its going to be a fart or a poop?

Hi There:

I too went through rectal cancer, surgery and a temporary ileostomy and reversal.  I didn't have to have chemo as 30 lymph nodes were removed and tested.  I was Stage 1 and all the nodes came back with no cancer in them.  The temporary ileostomy was for 3 months and then reversed.  I experienced what you are going through about 6 weeks after my reversal was done.  It is called cluster movements and can be very painful.  I was getting them usually in the evening where I would have to go and only small amounts would come out.  I would get up and then have to sit down again because I didn't know if I had to go again or if I had gas.  It always felt like I had to go and I was never completely emptied when I got up.  These would go on for about 6 or 7 times in a row and then subside until the next day.  I called the doctor and the nurse told me to start taking metamucil daily.  The nurse told me that this can happen with the type of surgery and reversal that we had.  I was taking metamucil before my cancer surgery because I was having trouble with my bm.  Once I took the metamucil almost immediately the cluster movements stopped.  I still get the odd time when I will go 3 or 4 times in a row but I believe that may have something to do with what I have eaten.  I take metamucil every day usually after dinner.  I will probably need to take it for the rest of my life.  The nurse told me that metamucil can work both ways for diaherrah and constipation.  You may already have the answers you are looking for by now.  I only just found this web site tonight and thought I would share with you what I have done to help myself.


 

RE: new here, having problems after ileostomy reversal

by Life_is_worth_the_fight on Tue Nov 27, 2007 12:00 AM

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Same here... I am almost 2 weeks post op from my reversal. I'm averaging 10-15 movements a day.. some soft thin little amounts of stool and some downright diarrhea that is mostly water. I willl have a very sharp burning pain in my bottom just before to give me warning. I go to the doc on thurs for stiches removel. I will ask some questions then.

 I wonder about taking metamucil, imodium etc. he's not mentioned any of that but I am sure I will need to do something.

 

Any info would be appreciated.

Thanks

Anita

RE: new here, having problems after ileostomy reversal

by Waunema on Mon Mar 03, 2008 12:00 AM

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Hi there,

I was diagonsed with stage 3 rectal cancer and had the typical treatment: 5 weeks of 24/7 chemo through my port along with radiation, then surgery to get an ileostomy and then 4 additional months of chemo and then an ileostomy reversal on 2/8/08. I am now experiencing everything that you all are talking about...clusters, painful shooting pains in my rectum right before I have to go and sometimes just for no reason at all as well as anywhere from 5 to 20 BM's a day. I am in my 3rd week of recovery and have had 3 good days, then was in bed again all this past weekend. When will some of this subside and allow me to leave the house for even 2-3 hours/ I have 2 small children (5 & 6) and am a 36 yrs old female. Any advice is welcome! I will speak w/ my Colorectal surgeon on 3/13 about taking metamucil, that sounds like a God-send. Thnx in advance, Waunema

RE: new here, having problems after ileostomy reversal

by Life_is_worth_the_fight on Fri Mar 14, 2008 12:00 AM

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I just finished my 5th round of chemo.. I have 7 to go :(

 

As to my BM's it has gotten considerably worse. I ended up in the hospital with another blockage 3 weeks ago. Fortunately this time it cleared on it's own. I spent 6 days in the hospital. My colorectal specialist doesn't want me to take Immodium. He thinks it could cause more problems. I experience diarrhea most of the time but sometimes after taking Immodium I get constipated and pass very hard painful stool. I also have on a regular basis both at the same time. YES that is possible... the hard stool will pass with diarrhea behind it. I have now lost just over 30 lbs. I was already thin before this.. I am 5'9" and weigh 110 lbs. So my oncologist worrries about the diarrhea. Colorectal doc wanted me to take miralax every 3 days. BUT with all this diarrhea I just can't do it. So, I am trying to use a fiber supplement to regulate me. I started last Sunday on Citricel... doc says its  better than Metmucil as it doesn't cause gas. I noticed today I actually passed normal looking stool... then almost diarrhea came and went. So I THINK I may be getting a hold on this. Today was the first day I increased the dose of Citricel... I am trying to take it slow and figure out the right amount that will keep me somewhere close to normal if that is possible. I know I will likely continue numerous bm's a day and I can handle that if it's not diarrhea or constipation. I am still having the sharp burning pain in my rectum. It usually happens just before I have to rush to the bathroom. I told my colorectal doc about it and he seemed surprised and offered no explanation.

 If anyone else is dealing with this and has so helpful info please share.

THANKS SO MUCH...

 By the way... I am sorry you're having such a tough time.. I can't imagine having young children while going through this. It must be very difficult.

GOODLUCK TO YOU!

 Anita

RE: new here, having problems after ileostomy reversal

by Bingflo on Fri Apr 04, 2008 12:00 AM

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hi Waunema, take more patient. I am in my 2mo & 1 week of reversal and i am doing good compare to my first mo. i used Balneol ointment, psyillium. It works on me but i have to watched out my food intake. You'll getting there, it take a bit time. I know what you feel. Now I can go out but with precaution. I thank God for my everyday life. Hope is well with you. Don't lost your HOpe. Have FAITH  in God ALWAYS. He will not leave us nor forsake us, that's His promise. AMEN!

RE: new here, having problems after ileostomy reversal

by aalbaran on Sun Apr 06, 2008 12:00 AM

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My father had an ileostomy reversal 23Jan08.  He too had very bad cramping, many bm's per day.  He takes Immodium (2 tablets - 3 times a day).  This has definately helped him.  He can now leave the house and run errands.  He had his entire colon removed and part of his rectum in Aug06 due to colon cancer.

RE: new here, having problems after ileostomy reversal

by MaryElizabeth0827 on Fri Apr 11, 2008 12:00 AM

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My husband had his ileostomy reversal 1/10/07, with many problems following.  He was diagnosed with Stage III colorectal cancer on June 2, 2006, with chemo and radiation starting within weeks to shrink the tumor.  At that time he was told he might have to have a colostomy (he was marked for this prior to his surgery, because the tumor was so low in the rectum) his surger  was 9/27/06, an eleven hour surgery to remove the tumor and lymph nodes in the area.  Even after the seven weeks of radiation and months of chemo three days a week, the surgeon said there were live cancer cells in the pathology report.  The surgeon (who was wonderful through all of this) performed an ilostomy with the plan of reversing it in four to six weeks after the rectum and colon had healed. Thirty-six hours after leaving the hospital, he had to be readmitted due to several blood clots in his lung.  Another six days in the hospital and then home again.  He had to be placed on coumadin and reversal surgery had to be postponed until Jan 07.  Not what we wanted but it wasn't an option.  The ileostomy itself was very difficult for him, to say the least, HE HATED EVERY MINUTE OF EVERY DAY when he had the ileostomy.  He never once changed the pouch himself, I was responsible for everything.  I called every ostomy supplier there was, The ostomy nurse at the hospital wanted him to wear a two piece pouch; this was fine as long as he was lying flat on his back but the minute he stood up, it would come loose.  Oh my, what a time!  I tried convatec, hollister, coloplast and finally Nu-Hope.  My husband has a large stomach so when he stood up the ileostomy receded making it almost impossible for the pouch to stay on.  Nu-Hope was my God-send - the people were wonderful, the pouches were cut to fit his stoma and life was almost good for me again.  Prior to using Nu-Hope, I was changing the pouch as many as six times a day.  What a nightmare.  Then the reversal was scheduled and we thought it would be easy and life would be back to normal.  NOT!  It's been fourteen months and he still has bouts of diarrhea and/or constipation almost weekly.  The surgeon said this is his "new normal"  We have tried fibre, laxatives, change in diet, etc all to come up with nothing.  It has been a difficult year, I'd love to hear from someone with suggestions and or experience in their own life.  He now says that if he knew it was going to be like this for the rest of his life, he never would have had the surgery - that's on the really bad days.   Our lives are limited to being close to a restroom/bathroom wherever we go, perhaps I can talk him into trying the citricel or metamucil, the fibre pills did not work, just caused more gas.  He has had the same experiences the others who have written had as well, no doctor has any answers.  For the people who are going thru this, my heart goes out to all of you. 

RE: new here, having problems after ileostomy reversal

by heidelberg on Tue Apr 29, 2008 12:00 AM

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Hi,

I am also the same as many of you with  stage 3 rectal prior to surgery, temporary ileostomy, reversed August 07. (though in my case the reversal was delayed a while due to a leakage showing at the surgery site which showed up during a gastrogrphin enema x ray. My aren't they fun!)

Anyway the first few months were like hell. I was driven to tears a few times with the pain and the frustration of it all. I have been taking the tablets arround 3 times per day, after the doctor at the hospital told me they didn't want me to take them initially! They work now reasonably well. I still get the occasional period when I have the "runs". But on reflection it is slowly getting better. The only problem remainig is occasionally when exercising or during sleep, a bit of matter "sneakes out". This can be very disconcerting especially if I am playing tennis for example. Has any one had this problem? I haven't really done the exercises or tried bio feed back which I have read about. To me it seems that I have lost some sensation in the rectum, possibly due to the radiotherapy and/or sugery scars. Can any one give me some advice?

Thanks

Chris

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