almost 5 months post take down

My primary question is why is your surgeon against you taking Imodium, especially this far out from your takedown? I can sort of see it early in the post op period, but really, he isn't the one who has to try to cope!

If he has a valid reason, OK, otherwise I think he has some explaining to do. This is something that there is no clear consensus on. Some surgeons like to see if your gut will adapt on its own. But, I think there is a limit to anyone's patience. Other than that, it seems like you have a good handle on things. Some of us just need additional bowel slowing and it shouldn't be a crime to treat it.

Jan

Have you kept a food journal to see if there are any correlations to loose bowels and particular foods? I am only a month ahead of you in j-pouch experience but I defecate only 4 to 6 times a day unless I have a food issue or an infection.

Some of my current problem foods are mushrooms, feta, animal fats (beef, cream, butter), beer and red wine. Some people also have problems with caffeine and chocolate. Our bodies are very individual so what you react to may be quite different.

I use Pepto Bismal for gas problems. It works very quickly. I used to take Immodium but had to stop because it started making me constipated! For a while it was a life saver and then it was just plain painful.

I did have a bout of pouchitis with similar symptoms to what you describe. I thought it was just normal and just tried to live with it until the pain became too severe. My symptoms started with constant mild pain behind pelvis, bms doubled and became very smelly and completely liquid, unexplained muscle fatigue and finally crippling abdominal pain and fever. The first time I asked my surgeon if I had pouchitis he said no because I did not have a fever. I think I already had pouchitis when I called the first time.

Two weeks later, my symptoms were much worse and I was finally put on a four-week dose of Flagyl and Cipro. I developed pneumonia while on the antibiotic cocktail so it is taking me a while to recover to full strength.

I would check back with your doctor at the very least about using Immodium or loperamide. You do not really sound like you have pouchitis but it is something to keep in the back of your mind.

In spite of all of this, I will be doing my first half-marathon this week-end. Something I could never have done before the j-pouch. I do believe you will get better. It is only a matter of figuring out what to do with food and meds.

I hope you feel better very soon!

Hi Jan and Subzero
I am not really sure why the surgeon was against the immodium. Maybe he wanted me to develop the pouch and ability to hold things in on my own? I am not really sure. Other than after the first 6 weeks after the surgery I have not seen him. I see him again the first week of Dec and that will definitely be a question I have for him.
As for the diet, as I mentioned I also have celiac so it is a challenge. When I was going through the colitis I found the Specific Carbohydrate Diet and it was a life saver for most of the colitis symptoms. I have tried to just do the celiac diet but find that certain things still bother me alot like sugar, rice, corn and to a certain extend potato. That does not leave me with very much to eat! If I eat the foods I just mentioned I get severe gas, pain, bloating and am going to the bathroom more ofter. I was so used to eating lots of fresh fruit and veggies that it is hard to not eat it anymore. I want to make sure that I am getting all the nutrition that I am supposed to get and with my diet so restricted I am not sure that I am .
Do you know of a suppliment that is pouch friendly that will give me the nutrients I require?
Thanks again to both of you for responding and giving me hope! My goal is to get back to teaching, I miss it so much but right now with having to go every hour I just can't do it.
Oh one more question. Do either of you know how I would use the benefiber or metamucil? How much do I take, in how much water or juice , when and how often and what do I do about drinking liquids....not for a couple of hours afterwards? Not really sure. Thanks!

Ensure is pretty safe in all regards, gluten and lactose free, so it is a good supplement.

I bet your surgeon was talking about the first 6 six weeks or so after surgery in regard to not taking the Imodium. If you haven't seen him, have you at least contacted him about the trouble you are having? They assume all is well if you do not contact them. Now, if you have and he still said no Imodium, I just don't know and do not get it. I do know one thing, I would have been a real pest to my doctor if he was not helping me get relief.

It is possible you have bacterial overgrowth even if there is no pouchitis, and antibiotics would be appropriate. And by the way, fever is not typical for pouchitis. It does occur, but it is not diagnostic. I never had it with mine.

I tend to not drink fluids with my meals, unless I am eating soup, and of course, I like wine with my meals. But, I am more than a decade out from surgery, so I think I am more adapted. Back when I was a fresh pouchie, I would wait 30 minutes or more after a meal before drinking more than just sips.

With the fiber, it is basically 4 times a day- with meals and at bedtime. Use only a little water with the regular dose. But, I could not tolerate Metamucil, made too much gas for me. Citrucel was better, but did not slow things down. It just made it more bulky. So, in that regard, I quit taking it. I did eat fresh fruit and vegetables all along. Some are better actors than others. Spinach is especially speedy in transit, but I eat it anyway.

Hope that helps a little.

Jan

It took me what seemed like a long time to recover after the take down. It was by far the worst recovery for me. At first i only took imodium and it didn't do anything for me, i was in so much pain. Then i went back to the doctor and they recommended citrucel or metamucil. I don't know if that is something you can do on your diet. That is what really helped me from going to the bathroom all the time and the burning. Also my favorite but cream is calmosite, it works! My take down was in 2007 and i still use the bathroom 6 to 10 times a day but Im good, much better than before surgery. Hope things get better!

Crick,
I tried Ensure but it has too much sugar in it for my body to handle. I am not a celiac but my body responds better to a wheat-free diet. I also have to be careful about eating the white foods (sugar, rice, potatoes) in small quantities or not at all.

I do not have a problem with corn but I rarely have any. I have been eating this way long before my colon ruptured so it does not seem very hard. Two of our four children also prefer to eat this way. We have had a lot of fun experimenting with different ethnic foods to find recipes that work for us. So far our favorites have been Thai and Vietnamese standards.

I have not found a good nutrient substitute. I eat a plant based diet that is pretty heavy on the protein. I do like my gluten-free vitamin and mineral supplement. It is Trace Mineral's Liquid Multi Vitamin-Mineral. I also take 5000 IU of Vitamin D a day. The last piece of my arsenal is VSL #3 DS, one packet twice a day. I have been thinking of adding psyllium husk to firm things up a little more. It is similar to Metamucil but without all of the sugar or artificial colors and flavors.

It is important to your well-being to stay active in the areas you love. Would it be possible for you to do on-line tutoring? It would be a shame to waste your passion for teaching.

I hope each day brings you a little closer to feeling "normal." All the best, Szm

The squeaky wheel gets the oil--find out which doctor's in charge of your bowels now, GI or surgeon, and ping them till you get some relief. There are approximately 972 threads on butt burn on this site, so you should be able to find plenty of good ideas for managing that here. Good luck!

Thanks everyone for all the advice. I have had a couple of good days the last few days as far as the pain goes. I went back to the SCD diet and am wondering if that has anything to do with it.
I started to take the benefibre the last couple of days as well but can not really see a difference. Is it supposed to make the consistency thicker? I am taking 1/2 teaspoon in my applesauce in the morning and the same amount at night with dinner. By the time late afternoon and evening arrive I am going a lot and it is very liquidy almost water.
Last week I took an immodium before bed and slept through the night but by mid afternoon things started to get looser and looser. I was afraid that it had slowed things down too much and then when it was out of my system, things went crazy. Does that make sense?
I also tried the pepto bismol the last couple of nights but am unsure of what it is supposed to do. I am not the type of person who takes medicine if I do not have to so was wondering what the benefits of taking it are and how often I can take it.
Any other means of thickening things up? Food does not seem to do anything no matter what i eat. The best seems to be with the imodium but again I am afraid of doing damage or hurting things if I continue to take it.
Sorry about all the questions! I would just really like to get a handle on things.
Thanks again for all the advice and support.
Crick

it was 6+ months for me before I started to find some stability.......
I'll give you a handful of thoughts to either try or toss to the side....

1)Potatoes and pancakes were (and still are) two of my best safe foods. I find they bulk/slow things down and they go through smoothly for me. Homefries, mashed, baked all work for me. And pancakes are great too.

2) Can you take Lomotil? I actually take a couple Lomotil first thing in the morning. I then can typically eat breakfast and lunch and go until mid-afternoon (?) before bathroom trip(s).... I will take some Immodium during day and then another Lomotil before bed. I'm ~20 months post-takedown so different for me than you right now.... but when I was where you are I was taking many Lomotil during the day.

3)Try getting most of your eating done early in the day. It will make your sleeping smoother. You might try sleeping on your back if you can?? I find sleeping on my side will make urges more likely.

4)Put a big tub of Noxema Deep Cleansing Cream in shower (blue tub) and when you are burning and in pain jump in the shower and use that deep cleansing cream liberally... it will soothe and cool... and make you feel way better........ Noxema deep cleansing cream helped me when I was about where you are and I have used it ever since and still use it every day......

good luck... hang in there... !!!

Hi all
Thanks for all the advice.
I will try some of your suggestions for sure!
Again the hardest thing for me is the eating. The diet that I am on is very restrictive....no corn, wheat, grains, potato, rice, dairy, sugar. This seems to keep the gas and pain at bay. That leaves me with meat(thank goodness I love it!), fruits and veggies and I grind my own nuts to make muffins and bread. The fruits and veggies is the hard thing....makes me watery. I am concerned that I am not getting all the nutrition that I need if I cut down on the fruits and veggies, otherwise the nutritionist at the hospital said it was a great diet, just add salt and butter/olive oil.
I tried the ensure but it has cornstarch and other ingredients that seem to react negatively with me and I get pain and gas...AHHH frustrating to say the least.
I posted in the help section today because I took an imodium last night and did not have a BM until late this afternoon and it was hard to go. I freaked out a little and am still a little concerned. Thank goodness for this forum. Taking Jan's advice and sticking to liquids and moving around.
Will definitley try the noxema, what a great idea!
Will go to the health food store this week to see about suppliments for greens and the VSL3, although I am not sure it is carried in Canada in caplet form.
Thanks again for all your help!