Ileorectal anastomosis for chronic diverticulitis

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OddDodd
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/7/2009 4:47 PM (GMT -7)   
Hi there -
 
I am new here and there are so many threads going it's mind boggling.  I couldn't find a situation similar to mine so I am starting a new thread, but I guess the cause isn't as important now as the effect from the surgery.
 
I am six weeks out from a laparoscopic ileorectal anastomosis.  The first night home (after 6 days in the hospital) I had a couple of real shockers with incontinence.  I think I finally was getting a good deep sleep and slept through the wake-up call.  smhair   I was so traumatized by this I bought Depends and wore them for about 2-1/2 weeks, though never had occasion to put them to use.  The incontinence never did happen again, for which I am eternally grateful.  As is my husband. 
 
I was initially put on Imodium.  I take it every 5-6 hours while I am awake, making sure that I take two within 2 hours of each other before bed, no more than 5 a day.  More than that makes be crampy.  That has made it so I can sleep through the night, thank goodness.
 
I have had issues with what feels like my rectum to my lower esophagus cramping up while I am having a bowel movement.  Not every time, but often enough.  I call it High Drama.  It makes me shaky and chilled, my face and lips get pale and it takes several minutes after I leave the bathroom to completely recover.  And in general my belly feels half crampy all the time no matter what.  I saw my surgeon five days ago and he gave me Bentyl (dicyclomine) 10 mg three times a day.  That has pretty well stopped the constant cramping and I've only had one episode of High Drama since I started them.
 
He also gave me a prescription for Questran to try, as a couple times a week I have what feels like pure acid liquid episodes that actually cause blisters and make the skin peel on my netherparts.  He said the Questran would bind up the bile acids and make this less of a problem.  I haven't tried it yet as I don't want to mix up too many things and not know what's working or causing a problem.
 
I think that the Bentyl is making me tired, but the dosage I am on is pretty small so I am hoping I will get used to it.  It is supposed to be temporary, not lifelong as I assume the Imodium is, as he says that the small bowel is still adjusting to it's new placement and that with time this should get better.
 
I am able to make no sense of foods that bother me so far.  My norm lately is to start the day with something somewhat formed and proceed on from there to applesauce consistency and sometimes to just plain old liquid, which is what causes the acid burn.  I can eat the same things from one day to the next and one day I am relatively okay at 4-5 times a day, and the next I will be pea soup/applesauce to watery for the entire day for 6-8 times a day.  Go figure.
 
I guess I am just looking for people who are farther along in this process than I am and what medications work for them, what foods are pretty certain to be triggers, and how long before you feel like yourself again.  I go back to work Monday for 6 hours a day and feel pretty confidant that it's time.  But I am still so not myself, my energy level is low, and I tire very easily.  I have been walking probably a mile or so every other day and have returned to Curves hoping to build up my stamina.  Having had 8 belly operations of one kind or another, I know 6 weeks out is not that far and sometimes it's 6 months before real "normal" occurs. 
 
I hope someone will share their experience with me.  Thanks for listening.
 
 

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 3/8/2009 7:51 AM (GMT -7)   
Hi Odd Dodd,
I too had an ileo-rectal anamastosis back in August 2008. I had major problems with bowel incontinenc and major acidic diareah. What helps me is the metamucil powdered fiber, because the fibers bind up the bowel and helps not only firm it up to at least a soft firm, but it decrease the output because the bowel is sitting there getting firmer, so you would go as much. The incontinence part is because, for me anyway, the colon was no longer present so that I could not feel any pressure in my stomach to know I would have to go and also because the diareah was so watery(I could not even feel it coming out until I went to sit on my bum, and feel something not right) that it is difficult for the rectum to even try to hold it. But with the help from the powdered fiber, the bowel was more firmer and I was at least feel the pressure of it trying to push out of my rectum and butthole. Even to this day, I only know when I have to go when I feel pressure at the bottom of my rectum and anus, like it is about to come out, I do make it to the bathroom, but I have to literally go within a matter of 20-40 seconds, so I can make it. I do have incontinence when my bowels are extremely watery, due to circumstances like illness or accidently eating something I can not tolerate.
As for the foods, with me I have separate food intolerances because of other issues, not the actually surgery. But there are foods like acid foods, fresh fruits, anything with skins and nuts, will cause either more watery, increased output, and especially with nuts, I find with me, they come out like glass, and also with acidic foods because I don't have a colon to suck up the acid out of the food before I pass it, so it makes the anal skin on the outside of the anus very painful. The other foods, like fresh veggies, salads, and some other of the non-acid foods and even very high fibered food will cause increase output and even with the metamucil, since these foods would cause high output anyway because of the fiber content, I would wait a while, but eventually you are able to eat these again without issues. Also everyones body is different in how they react with foods, so keeping a food diary is the best way. Foods that make you uncomforatble or even give out too much out put, but my surgeon told me that everyone is different, so what make work for one person may not work for another. Remember, or small intestines are still finding there niche in the digestive system, and on top of that now it has a lot more room to move around, so foods will natural go out alot faster and in some instances may not even be digested where it will literally come out the way it came in, but agin with in a few months all this will settle down as the small intestine finds a permanent place to rest and not move around that much, but will still move around more than the average digestive system for a long time making foods in general go out faster than a person without a colon.
Well, Good luck with everything. I hope this helps alot. Even with it's inconviences, it will eventually settle down and trust me you will feel alot better that you ahd the surgery. I had slow transit constipation and my colon died when they took it out. At least since I got the surgery, I am not longer sick and I know in the beggining it is a pain, but after you recover, you will feel better and even alot better than you probably did before the surgery. I hope this helps alot. Welcome again to the board. We are all here to help answer your question, so ask away. Everyone here is here to help and they are very helpful. You are at the ebst place for support and help with your surgery. Good luck and I hope all is well.
Maya
Rectal Prolapse Surgery: December 2006
diagnosed with slow transit constipation: June 2008
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerances (gluten,lactose,msg,etc)


OddDodd
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/8/2009 8:56 AM (GMT -7)   
Thanks, Maya. I'm sorry you still have problems with incontinence. I have no problems sensing it's in there and holding it, even for quite a while. I consider myself very lucky in that. Do you take any medications? My husband also suggested a food diary, so I think I will start that. I have discovered nuts in any quantity are not a good idea. I am trying Questran (cholestyramine) today for the acid diarrhea issue and am hoping it works out for me. My best food at this point is a very small sandwich. I've never had trouble after a very small sandwich. I like your explanation about the intestines having all that room in there now and still settling in. Makes sense as to why some days I'm uncomfortable in one spot and then other days in another spot.

Thanks again for the reply. It's nice to touch base with someone who knows what I'm going through.

Julie

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 3/8/2009 4:52 PM (GMT -7)   
I had my surgery for UC, but I think that all in all, it's the same in the end. I was told that it takes a full year before the pouch fully adapts to it's new job. It seemed to take months for me to see improvements, and that is normal. I agree with the food diary and foods like potatoes, rice, pasta, bananas are all good to help firm stools. Getting a good cream for the skin is essential to keeping the area healthy. Calmoseptine can be found behind the pharmacist's desk and is pretty cheap, Nupercainal is also a great numbing cream for those "butt burn" episodes. Beano can be taken with meals to help with gas, if that's an issue & Immodium taken right before bed, helps me sleep through the night. 5-6 small meals a day are recommended, I think that this helps the pouch expand as well.

I had so much energy after my takedown, I really think that the loop ileostomy had all my food coming out right away and I was weak from that. I went back to work after 6 weeks, but maybe you have an iron deficiency that is causing you to be so tired. Have you had your levels checked since surgery? B12 shots are helpful for energy.

Good luck adjusting and hope you continue to do well.
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08

Post Edited (tbraz) : 3/8/2009 5:56:39 PM (GMT-6)


OddDodd
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/8/2009 5:25 PM (GMT -7)   
Thank you, Theresa. This all helps so much. I also find that witch hazel pads, like Tucks or the Preparation H brand, are very helpful for the butt burn. So, am I correct that you only take Imodium before bed, not during the day? Do you use anything else? I am guessing that at 6 weeks out the Bentyl for the spasms is temporary, and the Questran may be as well, but that Imodium is going to be my lifelong friend. Small meals are definitely a must. I have had some of my worst cramping episodes when I think I am hungry and eat more than I am used to. On days that I am feeling like myself I tend to make food mistakes. I have underthe tongue B12 that I use, but I have to have my thyroid level checked to make sure my Synthroid is being absorbed adequately and will ask about the other levels as well. Thanks for the good wishes and advice.

Julie

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 3/8/2009 7:29 PM (GMT -7)   
Julie,
I ate the Metamucil wafers and took more Imodium in the beginning mostly because of the burn. If you can get your output thicker, it will lessen the acidity and reduce the frequency helping to avoid the dreaded burn. The main thing to help me was hot baths that I soaked in for hours. Now I only take the Imodium at night when I have to work the next day just to make sure I sleep through. I only work part time, and I don't always wake up in the middle of the night, I just use it to be safe. I also tend to eat up until the last minute before I go to bed, and I refuse to give that up, so I am just using it in case.

It seems like no matter how careful your food choices are, the burn/gas just have to work itself out. I was very careful just after takedown, but eventually refused to avoid all foods, just suffered through it.
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/9/2009 6:19 AM (GMT -7)   
I am 8 years out from jpouch surgery, a bit more complicated than your surgery. However, the results can be similar in the early days. I recommend you keep a food diary. This will help you gauge your transit time as well as trying to find those nagging foods that are bothersome. Everyone is different on the food thing but some common culprits are citrus, tomatoes, carbonation, and sugar. You can try eating metamucil wafers, they bind up the acids and relieve the burning or slather on some calmposeptine ointment. Everything you describe is normal in recovery. Expect things to improve in six week increments over the first year. Imodium may or may not be needed for life. I don't take it nor do I take fiber. Time will tell. Your new plumbing will continue to adapt and evolve over the next 5-10 years. Have patience and remember if you find foods that bother you today, try them again in several weeks. There is not a food out there that I cannot eat due to my jpouch.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


OddDodd
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/9/2009 8:36 AM (GMT -7)   
Thank you so much! It is so good to hear these success stories! Sounds like the Metamucil wafers will do the same as the Questran/cholestyramine. I will give them a try. This site has done me a world of good. It's one thing for the doctor to tell me to be patient, but a whole different thing to hear from people who have been there.

Julie

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 3/9/2009 9:14 AM (GMT -7)   
Hi Julie and Theresa,
What is also great for the butt burn, which is use, is the wal-mart equate version of destin cream. It helps ease the burn and also helps calm the area when I also have other uncomfortable sensations. It is very cheap, I get mine for only $1.76. for a 4oz. tube. I love the stuff so much, and need it all the time, I practically invest in it, lol. I hope this helps find another solution for the butt burn. I hope all is well and good luck with everything.
Maya
Rectal Prolapse Surgery: December 2006
diagnosed with slow transit constipation: June 2008
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerances (gluten,lactose,msg,etc)


NCBELLE
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/7/2009 12:08 AM (GMT -7)   
Hello, I had the total colectomy ileorectal anasomosis 5 years ago. I had this surgery because my large intestine stopped working due to years of laxative abuse from chronic constipation. I havent had good results from my surgery, I am 47 years old and it has changed my life. Everything I do is based around my chronic diareah. I have tried mmodium and the questran niether helps. I havent found a food yet to help me with this problem. I am unable to hold a job working in a daycare ( I loved it), I used to travel a lot, not anymore, I feel depressed a lot because my life has changed so drasticaly. To go to my daughters soccer games and sit and watch , is hard to control my bowels. I have yellow acid stools all the time. My insides even burn from the acid. My rectum is always split with sores from the acidy stools. I use q tips and neosporin with pain relief every time I go to the bathroom. Sometimes I just cry I am so sore and it burns so much. I would appreciate any helpful imformation , anyone experiencing these issues could give me. Its hard to try to explain to people that I am unable to work because of my condition on the outside people think I am perfectly fine.. They dont understand at all. I dont want a bag, I dont think I can deal with a bag at this time in my life. I am also extremely tired , I take vitamis and liquid B12. If anyone can help my email is galliardtmona@yahoo.com, thanks, Mona

OddDodd
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 5/7/2009 7:29 AM (GMT -7)   

Have you tried the Metamucil Fiberwafers?  They have been a miracle for me.  I still have days where if I eat too much or snack too much where I get crampy and this will usually be followed by diarrhea, but otherwise these have made a huge difference for me.  I eat one after every meal.  They aren't bad, I think they are psyllium based and come in cinnamon or apple pie flavor.  Questran didn't help me either.  I do use Imodium, one half hour before breakfast and lunch, one just after those meals, and one either before or after dinner.  Between the two, they have cut down on the acid burn and things, while not normal looking turds, are almost formed and my control issues are virtually gone.  I am so sorry your surgery has left you in such misery.  Do try the fiberwafers for a week or so and see what happens.  My surgeon, before I tried them, said he didn't see why they would work as they act mostly in the large intestine and he was amazed when I told him what a difference they had made.  Also, for the raw bottom, I have had better luck with cleansing the area with witch hazel pads (like Tucks or similar) and then applying Preparation H cream, but since the fiberwafers, that is almost a nonissue.  Good luck.

Julie


Julie
 
Diverticulitis
Right hemicolectomy December 1987
Sigmoid colectomy August 2006
Ileorectal anastomosis January 2009

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