need HELP NOW!

Please help me I am so afaid!!!!!!!!!!!

I think it is very common to be going as often as you are for the first several weeks or longer. The feeling you are experiencing is a new sensation when you have to empty your pouch which is different than when you had a colon. As your doctor for prescription lomotil which can slow down your transit time.

I had an ilieus in the hospital and it gave me severe pain. You should not be eating a lot of fiber now as that may also give you cramping. If you do not feel better in the next couple if days I would call your surgeon for his or her advice. Try and remain calm. The adjustment period is very trying on some of us.

LJK,
You are in the worst transition period of you pouch's life...if what you describe is how your pouch has decided to act (and most do) then you are in for a rough ride...it is only the first weeks while your biology tries to figure out its new route and role...please use the lomotil and wafers as perscribed, try to stick to the BRAT diet (Bananas, Rice, Applesauce, Toast & tea)....it helps to slow things down...we seem to have a lot of success with peanut butter & toasted bagels, puréed carrots and mashed potatoes...heating pads on both your lower back and front, hot bathes and massaging your tummy with warm oil have all helped me a lot when in your shoes...you might ask your doc for an antispasmodic but he may decide that it is too soon (fear of causing an ileus?).....
There is really nothing else that I know of that could help...the others may have a suggestion....you should also used a very mild soap and water regularly to wash yourself down there to avoid the dreaded Butt Burn...
Hang in there...it is a rough ride but once you train your pouch to listen to you it will get better.
Sharon

Look into Bentyl. It is an antispasmodic and helped me a tons for 6 months post op to slow my bowel. I still use it on occasion since food goes through me in 5-8 minutes.

How do you use bentyl ( or other antispasmodics like hycosyamine)? As needed? before a meal? Only when you notice your frequency is up? My son seems to have the rapid
frequency in the evening now. Wondering about trying that for him. Thanks.

Antispasmodics help cramping so you take when cramping according to the directions on the prescription bottle.

ljk,
You can take up to 8 Imodium a day and go ahead and take as many as you feel comfortable with, 2 at a time. If your stool gets too formed then take less. If I were you I'd start out with 4 a day and increase if needed. Make sure you are drinking plenty of water so you won't get dehydrated. Use electrolyte replacement water too. I personally don't like gatorade as it has too much sugar and food coloring. There are many others out there that come in powder or tablet form, I order NUUN tablets directly from them on-line. The World Health Organization formula is good. Pedilyte is to. V8 juice and even pickle juice helps as well

Things will slowly get better. You are going through hell now. You have to look at improvement as a month to month versus day by day or even a week to week scale at this point. They were not kidding when they said it takes 6-12 months to recuperate and sometimes longer. People go back to work and come home and all they do is sleep as they are so worn out and then others are great. We are all alike but also all different.

You are not alone, we know what you are going through

It has been a while since I was a new j-poucher (I've had mine for 13 years now) but I still remember the first few weeks. I took large doses of immodium for the first 2 years or so. I can't remember the exact dose but you can vary it according to how your pouch reacts. Any way, I used enough that we bulk ordered it from an online pharmacy so insurance would cover it. My one warning about immodium is to pay attention to how your pouch and abdomen feel. The only time I've gotten pouchitis, I took large doses of immodium to counter the runs when I had abdominal pain. It was terrible and I ended up in the hospital for 3 days and missed the prom :P Make sure you aren't covering up symptoms of an infection and making it worse.

My other suggestion is to experiment more with foods. The BRAT diet never worked well for me. I don't do well with applesauce. I lived on yogurt and high protein foods like cheese and I still eat them when I don't want to go to the bathroom a lot (before long commutes or as a late night snack). You have to experiment to figure out foods since everyone seems to respond differently to things like dairy and fiber.

Good luck!

I took bentyl 30 minutes after I ate since it reduced the sleepy side effects. I had a lot of movement and hyper-active bowels in the beginning so it was a life saver for me. I had a lot of gas that came with c.diff and SIBO so it helped. If I have a IC flare I use it as well since it calms spasms in my bladder that my pouch sets off.

I use it when needed now, Maybe 2 times a month.
I tried lomotil once and it froze my bowels or something where food got stuck and my pouch twisted. So as much as it helps my transit it freaks me out. I think people with jpouches can comment on immodium use more. I just know Levison and Bentyl.

FYI
My Mayo GI writes me a prescription for Imodium as he says it works better plus my insurance covers it. Before that I was buying it in bulk too with no insurance coverage. As prescriptions go it's one of the cheapest I take.

Prescription is:
LOPERAMIDE 2MG CAPSULES
Take 1-2 capsules four times daily as needed for loose stools.

I think it gets in my system faster as before it took longer to see if it was working and sometimes I took too many before I figured it out.