How soon after take down surgery did you start taking Imodium? I'm waiting to hear back from my surgeon but starting to feel a bit desperate for some relief.
Many people take it immediately. Personally I wanted to let my body find its own rhythm before I started changing it with drugs. Not sure if there is any merit to my approach, it's just what I did and how I felt.
You should know that immodium isn't a magic cure though, especially in the early days. The effect is nowhere near as dramatic as when we had colons, and at the moment you are using the bathroom a lot because you are swollen sore and sensitive after major operation, and not because you stool needs drying out/slowing down. In fact I'd think the last thing you want with a sore pouch is to thicken and allow the output, but like I say, I seem to be in the minority which that line of thought
What is your diet like? When you left hospital after reversal, did they give you a list of foods to eat and what to avoid in the first few months? I was around 8 times a day for the first three weeks, then developed pouchitis which pushed it to 12 + times per day. Only then did I start taking Imodium because I didn't know I had pouchitis. I was given Cipro by my doctor which helped the pouchitis immediately, by the third dose, and cut the frequency and thickened everything.
I found that eating white rice or pasta or noodles with protein helped to thicken too. I avoided tomato sauce and citrus because of the acid burn, but now I can eat both with no problems. I avoided foods that are insoluble fiber, ie., hard vegetables, corn, mushrooms, leafy greens, salads, lettuce, nuts, seeds because it either caused frequency or caused stoppage, followed by bum fire. Now I can eat everything, so it might just take your pouch time to adjust. Ate lots of sunny-side-up eggs or scrambled eggs, toast with almond butter, which helped slow things down and provided much needed protein to heal the tissue damage of surgery. Try a soluable food such as zucchini, but don't eat the skin; peel it, and eat only the cooked flesh for now. Zucchini will give you a soft soluable fiber and can help thicken things. Later on you can reintroduce insoluable fiber. You are probably still swollen inside and your new j pouch does not like having any type of stool (loose or firm) against it so it's working overtime to expel it. Your pouch is still learning how to be a colon. It spent your whole life being a small intestine, just quietly absorbing nutrients and suddenly it's expected to be a colon. Take Imodium if you absolutely need it, but try whole foods to help your new pouch adjust, chew all foods thoroughly, try lots of fresh fish, baked chicken, tofu, to help your output. Try to space your three meals -- and maybe two snacks -- evenly throughout the day so that your body doesn't go into starvation mode if you stop eating by the afternoon. Give your pouch time to recover and learn how to work. Best wishes.
Thank you for the feedback. Unfortunately, I was discharged from a small hospital (not the one my surgeon and his team usually work out of) and on a statutory holiday. I was discharged by the general surgeon on call and had very little guidance on what to expect. No dietitian, no chance to ask my surgeon questions or have him give me more details on what to expect... I've been pretty in the dark. Of course I had a lot of info going into the surgery and was obviously warned of the pooping frequency, but no chance to talk about diet or other means of attempting to control my output. So... very thankful for all of you!
To be honest doctors advice is probably overrated at this stage. They have done what they can, they have no way of knowing how well your body will cope, what will help, what will hurt etc, it's all individual, and you already have more experience of living with a pouch than they do!
Usually post take down people stay quite closely to the ostomy diet sheet and slowly introduce be food.. so basically white and beige processed food that mulch down to nothing.. simple did such as chicken, fish, white bread and pasta etc, avoiding accusing food or anything with a high fibre content.. then slowly build on that.
Personally I ate a lot of veg prior to the op and was keen to get back to that for the healthier lifestyle (I find veg soups etc anti inflammatory on my gut) I figured my body needed food nutrition at this difficult time more than ever. Even though I was used to it I did suffer, in fact even now 12 months on, veg still greatly increases my volume and number of visits and cramping. But I figure it's worth the hassle. Others disagree.
If say that a good quality probiotic is the most useful thing you can do for yourself in the early days. Plenty of threads in here about that, and again others disagree hth
SK, I've attached a link to a site that has lots of simple, sensible information about the surgery we've all been through. It refers to cancer, but it relates to the diet that j pouch patients should follow. You can search the site for what you need. I hope you can access it. I don't know if I copied or pasted it correctly.
Another resource can be the hospital your surgeon and his team work from. Major hospitals usually have a dietician on-staff who will be familiar with ostomy / j pouch surgeries, especially if your surgeon works from there and specializes in this type of surgery. Call that department, tell them you are Dr. X's patient and ask for a diet sheet for ileo anastomosis patients. Or ask your surgeon's office for a food sheet. My surgeon specializes in this type of surgery and they were prepared with a thin binder of information (and j pouch pictures!) given to me a few weeks in advance. For anyone else preparing for this surgery, remember to ask your surgeon or his assistant, or the pre-admission nurse, for a diet sheet so you can prep your kitchen.
My surgeon scheduled out how much and when to take Imodium/loperamide and metamucil. That was right after surgery.