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[Cwells1]

Hello everyone! My name is Clayton. Here is my background: Had a total collectomy in June 2015. I was supposed to only have a section of the transverse colon removed, but they had found the colon had perforated and I was already septic. What a surprise waking up after being on a ventilator and in ICU for several days and finding an ileostomoy on my side! Fast forward a year and a few months, after getting back in great shape and at the top of my game( I play in a 50 and over basketball league) ,I had the J pouch surgery on October 3rd ,2016 and am still at home recuperating. I'm planning on having the reversal in early 2017. The only thing that concerns me is the fact that my current ileostomy output is very watery most of the time. I can't seem to get it under control for any amount time! I take loperamide, eat potatoes, applesauce,tapioca pudding any and everything I can think of to remedy my situation, but nothing seems to work for any substantial amount of time. Sometimes I get some thickened output that sort of resembles something in between the consistency of pancake batter and oatmeal, which would work fine for me post reversal, but more often than not, I get a very watery output. At night for instance, I'll try to eat dinner early so that I'm not "active" at bedtime, but I still find myself having to get up 3 to 4 times a night to empty a very watery bag. I'm scared to death that I'm going to have control issues once the reversal is done because of this. Does anyone have any suggestions, or feedback that might put my mind at ease? Any information would be greatly appreciated! Thanks for your time!

[Doris+]

I'm sorry, but the loperamide won't do it alone. I take 6 lomotil, 6-8 loperamide and 0.6 ml opium 1% tincture 3 -4 times a day. Plus potatoes etc. My doc wouldn't do a J pouch. She said there were "too many problems". Like you, I have very little colon. Even with all this medication It's hard. But I manage fairly well! About 8 BM's a day of a consistency that I can "hold" till I get to the toilet. I wear a thin sanitary pad when I'm "runny". Without a fair amount of colon you will probably find the reversal difficult too....but not impossible. For now, add lomotil (Rx) to the loperamide and see how that goes. The opium has helped a lot but is very expensive and should be a last ditch effort for obvious reasons. Good luck. Doris

[To Good Health]

Welcome, Clayton. You've been thru a lot. I think Doris' suggestion to try to thicken up your output while you still have your ileostomy is good.
I was on Immodim and lomotil after my reversal but ultimately it was unsuccessful. Some folk have a test before reversal (which I didn't have) I'm not sure what it is.
Doris, you are on a lot of meds - do they have many side effects?
All the best,
TGH

[Cwells1]

Thank you Doris and TGH for your feedback! I will speak with my doctor about the lomotil, but will try and take a few more loperamide tablets. I'm only taking 2-3 a day. I notice that they make me a little tired, but it could also be that I'm still recuperating and trying to build up my stamina. The "leak test" is called a gastrograffin enema I believe. I'm looking forward to the reversal because I'm tired of this bag and all of the skin irritation that comes with it.

[To Good Health]

Clayton, do you spray your dry skin (then dry with hairdryer) before putting on the flange. I mean with something like Cavilon or a cheaper brand.That can help with skin irritation from liquid output. I have liquid output too and the irritation is annoying. Sometimes it makes me grumpy!
TGH

[Cwells1]

Yes I do. After I put the flange on, I also use a heating pad to help seal everything up. I have had trouble with my appliances staying stuck on my skin since day one, which causes me to change it daily, otherwise I will have leaks. I use
barrier strips around the perimeter and also surgical tape occasionally. I find if I can go two days without changing the appliance, my skin condition drastically improves. But unfortunately that doesn't happen very often, because keeping everything dry in the shower is damn near impossible!

[To Good Health]

Hi Clayton,
You sound to be doing everything 'right'. Yes, changing daily is hard on the skin. After having ostomies since 2007, I finally discovered "Press and Seal" I believe it's a Gladwrap product - so superior for keeping pouch dry in the shower compared to normal Gladwrap. Funny thing is with my ileostomy when I could go 5 to 7 days before a pouch change, getting it wet in the shower didn't matter at all. I'm lucky to get 3 days now and only because I use the Bravo strips. Good luck,
TGH

[Cwells1]

I will have to try that! Thank you!

[Doris+]

Hi, To Good Health. Side effects? Almost everything has side effects. That said, I can't say the side effects are significant enough to stop the Rx. I don't exceed the max dosage on anything. The opium tincture (schedule 3 narcotic) is a potential problem but it is strictly monitored. If I take too much it can make me groggy and lightheaded. The lomotil is also an addicting drug and closely monitored. Same side effects. It's important to maintain adequate liquids and food on a timely basis (I write down every dosage/time). Both drugs require either monthly "call in" refills by the doctor or monthly written scripts by the doctor.....a big pain in the ass. Neither Medicare or my Rx supp. plan pay much. I'm 70 yrs old and weigh about 150 lbs. Reasonably active and live alone. I'm very careful with my meds as an "accident" would either kill me or put me in a nursing home. Keeping my ostomy with it's difficult hernia was quickly becoming a serious problem so I accepted the reversal with it's own set of problems. Please understand, I never had a problem living with an ostomy. It was the developing side effects that got to me. I would not recommend this course (with all the meds) to someone that was doing well with the ostomy. For those people who have problems, there are options, not perfect....but options. Aren't you glad you asked! Hope you have a great day. Doris