new here, having problems after ileostomy reversal

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RE: new here, having problems after ileostomy reversal

by billsjan on Sun Mar 28, 2010 09:58 PM

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hi nice to hear from you i have now had my reversal nearly 4 years i still go to the bathroom up to anythink as much as 20 30 times not had many good days but the bum burn has not happened for a week but i wont speak to soon my weight is still low i have to see my surgeon to moz for my check up do you have trouble with certain foods as i find some food i just cannot eat but i also have to go emmediately when i have eaton i now find that if i take 2 loperamide and 2 co-codamol in the morning i seem better that is what i have started to do and it seems to work and i take 2 co-codamol befor i go to bed i was told to do this along time ago but did not want to go down the road on pills but my doc said it will be fine and it is hope you get better soon as we are all different take care good luck

RE: new here, having problems after ileostomy reversal

by billsjan on Thu Apr 22, 2010 08:25 PM

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Hi i had my reversal nearly 5 years ago had very many problems i went days with out eating thinking it would stop me going to the bathroom every 5 mins but i have just found out why i was getting the burning and stinging every day because i was not eating right i have had the best month in 5 years you have to eat to stop the burning i did not eat yesterday and i had the burning which i have not had 4 a month i also take 2 lopermide in the morning now i can go out and feel safe hope this helps you as it has given me more of a life

 

RE: new here, having problems after ileostomy reversal

by paulaines on Wed Apr 28, 2010 03:38 AM

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On Apr 22, 2010 8:25 PM billsjan wrote:

Hi i had my reversal nearly 5 years ago had very many problems i went days with out eating thinking it would stop me going to the bathroom every 5 mins but i have just found out why i was getting the burning and stinging every day because i was not eating right i have had the best month in 5 years you have to eat to stop the burning i did not eat yesterday and i had the burning which i have not had 4 a month i also take 2 lopermide in the morning now i can go out and feel safe hope this helps you as it has given me more of a life

 

Hi! I had my ileostomy as a consequence of a surgery to remove colon cancer last year (in May 2009).  On April 5 this year I had my reversal, and it is really tough for me because of all the water and the weight that I am losing.  I started to take 2 immodiums every four hours today, and I have not had any BM since the first dose at 11am (I went 4 times before that time).  I also had vomiting so I did not feel like eating or drinking anything... Today I went to the doctor and got some hydration (iv fluids) which made me feel better.  I also got Aloxi, an antinausea medication, which has helped me keep an Ensure (shake) and some crackers with cheese down.  What bothers me the most now that I am better from the BMs, are the cramps and bloating from gas accumulating in my belly, and that a medicine I take for one symptom (e.g., diarrhea) gives me another (in my case dyspepsia).  I have not had a good night sleep since my reversal.  I'm confident this will change, but I just want to share that you have to be patient and know how your body reacts to each food.

God bless everybody who is going through all these tough times.  Only He, who suffered in His passion and cross more than we can imagine, will give us the patience and trust in Him to defeat our sufferings and be healed.

RE: new here, having problems after ileostomy reversal

by Carole_Anne on Thu May 13, 2010 02:21 AM

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I had an ileostomy reversed 3 years ago also as a result of colorectal cancer.  I had a number of cluster movements and alot of gas each day.  I asked my doctor what I could take and he said metamucil may help with the cluster movements (going more then 7 times in a row).  I take it in the evening before I go to bed and it seems to help but I had to find something for all the gas and cramping I was having especially after dinner.  I went to a health food store and it was suggested that I get a digestive aid that you take just when you sit down to eat.  It is made by Vitamost and called Ultragest (It is available in Canada) but not sure where you can get it in the US.  The important ingredient that is in this digestive aid is Bile.  You can google Ultragest and it will give all the ingredients (they are all natural ingredients).  I checked for it in the US when I was there in the winter but was unable to locate any with Bile listed.   It has been a life saver for me.  I can't remember the last time I had gas or cramping.   I have been taking these pills over 1 1/2 years now.   Hope this helps you.

RE: new here, having problems after ileostomy reversal

by jslee on Fri Jul 09, 2010 04:38 AM

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Hi,

I had surgery for rectal cancer in April of this year.  and currently going through 8 cycles chemo. I should be having my reverse ileostomy sometime in the fall.

What I've been reading about in the posts above is scaring the bejeezus out of me. What I want to know is what is the normal? While it might be expected that there could be problems initially while your body adjusts and heals, what percentage of people actually have the serious and chronic issues as described in this thread?

RE: new here, having problems after ileostomy reversal

by cybersharque on Fri Jul 09, 2010 09:27 PM

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First of all, there is no normal. There is what you have, and there is what everyone else has, and the only thing that matters is what you have.

My own experience: March 2009, DX rectal adenocarcinoma, T2NxM0. Received 42 GY of radiation in 28 fractions, together with continuous 5FU. After chemoradiation, waited 8 weeks and had an LAR. Turned out to be VERY low, with a 2cm rectal cuff, so it was ALMOST a coloanal anastamosis. Because it was so low, I had a temporary ileostomy.

Ileostomy was a bad experience. I'm overweight, so I had a short spout and had to use a LOT of convexity and a LOT of adhesives. Fungus was no fun and made leaking a regular event.

Ileo was reversed February 2010. Initial reaction was that I wished I still had the ostomy. No sensation of impending bowel movements, extreme urgency, frequent soiling. And I had gotten the ostomy under control to the extent that leaks were rare, and only when I (stupidly) tried to set a record for length of wear. Of course, the prize in that contest is a leak!

#1 Just because you're off the stoma does not mean you should halt the immodium. I am now down to 2 in the morning and 1 at night. Makes a big difference. Still discontinuing the immodium every other week, timing the floodgates for the weekend. Sometimes, there is just a slight increase in frequency. Sometimes, it is insane and I can't even get off the loo to answer the telephone.

But it does improve. I now know the difference between a fecal bolus and a fart. And I have not had an accident in a month, except for one day when I had a bona fide intestinal flu and real diarrhea.

#2 Depends is indispensable.

#3 Keep a complete change of clothing and wet wipes in the office.

#4 Work with your WOC Nurse. We tend to ignore the fact that after the wound is cared-for and the ostomy is brought under control, the nurse will help you overcome the incontinence problems. It takes time. In my case, I had to get the stricture at the anastamosis to stretch. Then I had to encourage the distal sigmoid to stretch to serve the same function as the rectum.

#5 Experiment with foods. I find that oatmeal for breakfast makes a world of difference.

#6 If you are burning, apply diaper cream. Some people recommend exotic (expensive) butt creams and you might find them needed, but in my case, simple, cheap diaper ointment worked wonders when my butt was burning (which it tends to do when you're having 18+ BM's per day--but it does abate).

#7 Give yourself some time. It took a while for the effluent from your ileostomy to turn creamy/pasty instead of watery. It take time for your intestines to recover from the insults of surgery. But bad as this is, it is not as bad as Stage IV with mets and a death sentence.

Everyone's course is different. The scariest stories (I find) are those who had a colectomy (e.g. for UC). That doesn't mean that recovery from a proctectomy for rectal cancer is easy. But it does mean that you should not place too much weight on the horror stories.

RE: new here, having problems after ileostomy reversal

by deborah.lightfo on Tue Jul 27, 2010 12:22 AM

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On Sep 19, 2007 12:00 AM Carole_Anne wrote:

 

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.


 

I am so happy to have read your story.  I too am having those dreadful cluster bm's and they are so painful.  I don't want to eat because I don't want to go through the trouble of going to the washroom at least 10 times or more, but I can't starve either. I am going to ask my doctor on Wednesday about the Metamucil, I am 3 weeks post reversal so maybe it's kind of early for me to add that to my diet, but I will surely ask her.  It's so uncomfortable, and my bum burns so much.  I am having sitz baths at least 7 times per day or more, just to have some relief.  I am on a low residual diet right now and am suppose to introduce fiber to my diet at 4 weeks, so that should be interesting.  I appreciate the support.  At least now I know there is hope for me, and that there is light at the end of the tunnel.

 

Thank you,

 

RE: new here, having problems after ileostomy reversal

by deborah.lightfo on Thu Jul 29, 2010 11:05 PM

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Thank you it was most helpful to read your article.  I was never told of the problems  I would have afterward with the rectum area and that the stool would  be little and frequent due to the area not holding as much as before surgery.  The were going to do an anal excision on me first but opted for the LAR. I am having frequent bowel movements ,cluster bm's. Much pain and I'm using Eucerin cream. I was to the surgeon yesterday and they told me to take immodium in the morning and evening.  He said it would slow things down. I asked about metamucil but he declined to suggest it as he said it might make me bloated. I do not know about either but you tend to follow doctors orders.  I took my pill 1 hour ago and it has helped already, no sudden urges to dash to the washroom.  Hopefully it won't constipate me as that would be another issue to deal with. I had stage 2 rectal cancer but it metastized to my lungs so all in all I have had 5 weeks of chemo/radiation prior to rectal surgery, followed by more chemo, the after the lung metasis had more chemo. Survived all of it with little side effects. I just wonder if the immodium will do the trick has anyone had luck with this.? I would appreciate any replies......Regards

RE: new here, having problems after ileostomy reversal

by cybersharque on Wed Oct 13, 2010 06:59 PM

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I don't know if I would call my experience with Imodium to be "luck," but I cannot live without it. I begin each morning with three tabs; three more at lunch; and two after dinner. Approximately every two weeks, I advise everyone in my life that I am going to have a lost weekend and discontinue the Imodium after the Thursday morning dose. By Friday evening, the serum level is low enough that function returns. Saturday is spent catching up on all the bowel function that has been suppressed.
When I do not have a lost weekend, I find that the ensuing week is hellish; even with the heavy dosing, I will have more than a dozen voluminous movements per day, and the trip home from to work becomes parlous. As long as I stick to this protocol, and avoid foods of danger (first among which is grilled chicken from the Halal Cart down the block), I do not cramp and I do not have accidents; but if I deviate, then the problems are essentially immediate and severe.

My takedown was eight months ago, and while things have not reverted to what they were BC [before cancer], matters are immeasurably better than they were during the first two weeks post takedown. The terminal ileum stretches and I have learned the sensation that announces that I need to get to the bathroom.

Just remember to eat enough fiber daily, or the imodium will produce constipation comparable to concrete, which is not picnic either.

RE: new here, having problems after ileostomy reversal

by annejones on Fri Oct 29, 2010 01:48 AM

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On Mar 14, 2010 2:14 AM SurvivorLou wrote:

I was treated for for stage III rectal ca in 2001 and 2002.  I had the standard radiation, chemo, LAR treatment as most of the folks here are all too familiar with.  After years of struggling with 15-20 bm's a day, I was finally ready to have a colostomy.  I even had an appointment with a colo-rectal surgeon.  During my research on colostomies, I learned that folks with colostomies can "irrigate" their bowels and have very few or no bm's in between irrigation sessions.  I decided that I could approximate the irrigation procedure by using tap water enemas.  After clearing this with my doc's, I tried it.  I can tell you that it works beautifully.  I give myself an enema every other evening, then I usually have no bm's between enemas.  It takes me about 45 minutes for the whole thing, including setup and cleanup.  45 minutes every other day is far less time than I was spending in the bathroom going 15-20 times a day.  I have been doing the enemas for over a year now and I can tell you it has made a huge difference in my life. 

I feel bad when I read the struggles of all the people coping with the after effects of rectal cancer treatment.  I wish more people would try the enemas and regain some kind of normalcy and control in their lives.  I have a write-up of the procedure I use for the enemas.  Send me a pm if you are interested in more info on this.

Lou

my husband has had reversal of illeostomy and I would like

to know more about the enema treatment you wrote about.

I feel that may be his answer... thanks in advance

 

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