Ljk, so sorry to hear you're dealing with all this. I can only imagine since I haven't gotten surgery yet. Based on what I've read, this is what I understand. Hopefully, some of this will be helpful.

I've heard the loop ileostomy is a pain compared to the end, since it's further up the small intestine. That's probably why it's more of a hassle to deal with and more liquidy. It should not be that way though once connected and I believe the output and what you're seeing how will be a lot better after takedown since more of your small intestine will be used then.

I think the drug you're talking about is Lomitil. I'm not too familiar with it but I believe it's similar to immodium just stronger. Basically, a prescription strength anti diarrhea med. Members on here can definitely give you better advice than myself on how to use this or what's recommended. Don't want to steer you in the wrong way.

I hope things get easier for you. Hang in there. I hear that it's s bit rough during the step before takedown but once that's done it should be a lot easier. Sending positive thoughts your way.

I replied on your other post.

Immodium and Lomotil, while antidiarrheals, are not the same med at all. Lomotil is by prescription because it's a Schedule V controlled substance (two meds in one - diphenoxylate/atropine); Immodium is an over the counter medicine called generically loperamide.

How long have you had the J-Pouch? Keep a diary/log of what foods you eat and how many times a day you go to the bathroom. You will soon discover which foods do not agree with you and the info will be useful to your doctor.

Lomitol helped me reduce my bathroom time by 50%. Immodium does nothing for me. I had my take-down in April, so I am still considered a "newbie".

I think we all start out feeling the way you are feeling very frustrated and fed up because you just want to feel better which is why you originally got this surgery but unfortunately it is a long recovery and you are still going to have some tough times and wonder if this was the right decision. What I've noticed from people in your situation going through a lot of regrets that they were not as educated or explained fully how everything was going to be from their surgeon or Dr that recommended the surgery. I had a great surgeon and he was honest and didn't beat around the bush. I also read obsessively about it and read blogs of other peoples experiences from when they had UC and now their days with their jpouch. I realized that the people that were suffering with terrible UC that got jpouch surgery were very satisfied. I believe you are going through the scared, frustrated, and lost feeling we all felt at some point.

I can honestly tell you it will get better with time. Is it going to be the same as having a healthy colon....absolutely not. Its just an adjustment you will get used to over time. This is a good site to get other people's experiences and look for compassion because we all have been through a lot of tough times.

Lomotil is a prescribed antidiarrheal medicine that would be prescribed if immodium or other medicines don't work for you. You need a prescription due to the strength of the medicine. Unfortunately it is not the answer for everyone as I found it still doesn't quite do the job for me. I took Citrucel with very little water 3 times a day and that seemed to help. You also should do some research on foods that will thicken your stool or maybe consult with a nutritionist. We are all here to support each other and we have all been through the tough times so you have support. Feel free to let your frustrations out on this site because there are thousands that understand and can help you get through things or make the proper suggestions on who to talk to. Good Luck!!

I posted on your other thread first. My answer is over there.

Leakage is a bit more common right after takedown, often it's at night, but generally tapers off over time. I don't have leakage at all now. If it happens at night ever, it's because I'm usually very sick with some GI thing.

Your sphincters are normally closed, so you don't have to consciously "clench" all the time. However, at first, it may feel that way. That is because initially, everything is sort of irritated/aggitated and you have that sense of urgent diarrhea. But, this calms down after a few weeks.

Jan

Take this with a grain of salt, since I never had the ileostomy. But, from what people say here, it is absolutely typical for this slippery mucous to be next to impossible to control prior to take-down. However, once take-down occurs, and stool is coming through, continence returns.

I know it must be difficult to deal with all this, not knowing for sure what will appen next. Try not to panic and assume the worst will happen.

Jan

I too had no control most of the time. I had takedown for less than 24 hours and believe it or not the mucous stopped. Of course it came back after a week or so, but that's because I went back to an ileostomy. Don't worry, just wear a pad.

It totally is normal. There's nothing you can do, while diverted with a loop ileostomy, to make the mucus "stop," but it WILL taper in time, and once connected, it's mixed with stool again and isn't an issue. Just keep Kegels as a priority, to keep your sphincters toned, which can help in time.

A little tap water enema will not hurt anything, and will serve to rinse out the build up of mucous. Otherwise, there is not anything you can do about it. If it helps to know this, the mucous production is a sign of healthy mucosa. Normal mucosa sheds mucous and cells as part of what it does. If you are really worried about ordinary pads not holding the leakage, you can try adult briefs.

Jan

I wasn't permitted to put anything in my resting pouch. I know 1steps don't have a rest time, but I'd seriously check with your surgeon before you do an enema.

I didn't have continual leakage, just spasmy moments when it would come out. I didn't even wear a pad by month 3... I hope it slacks off for you, soon.

An enema is fine in an unconnected pouch. This was required by my surgeon to expand the pouch for takedown.

Sue

Leslie,

You should get an email to the address that you entered for your membership here when you are sent a PM. In it will be a link to the message here where you can reply. If you can't find that email, you can access your messages by clicking on "J-Pouch Community" above, then "Personal Zone" which will take you to your profile. On the left, click on "Private Messaging" and you will be taken to your list of messages. The format is the same as forum posts, but they are private.

I will send you a test message to see if you get it.

Jan

Well it been 1month since I had the surgery (step 2), and I am feeling Ok still trying to regain my energy. I have been pushing myself, I make a list of things to do and try to complete them all. This seems to help a little but still tired, and I am not the kind of person that likes to sit around or sleep alot. Still struggeling a little with the output, its still a little runny so I have increased my immodium. As far as the enima, well no I have not had the courage to go that far, athough I was told on here the it would strech the j-pouch and I would be more prepared for the end result( using the bathroom like anybody else does). Now to put my focus on the last step,which is about 3 weeks away Wow time flies, I just hope I am happy wih it as I have read that some people arent at ALL. This does concern me Alot. I dont want any infections,accidents aspecially in public, ant I want to eat the same way I have been. I hope I am not asking to much out of all this, I guess only time will tell.

Well today was a very bad day for me. It started off good but it just fell apart. It was time to do my ostomy change, no big deal right! Well as I was trying to put in on I noticed drainage just like the same out of my butt it was coming out where the stool comes out it was coming out at the bottom of my stoma towards my vagina. My thought was SOMETHING is WRONG!! I went ahead and put my pouch on but I called the Cleveland Clinic right away. Of course they had to take a message and was told they would call back later. No big deal I continued with my day cleaning the house and so forth then luch time came around and my husband and I had roast beef sandwiches toasted. Well about a half hour later what do you know I started to leak again. This wasnt from the stool it was the drainage that was the same out of my butt! I thought this is it I am calling back and they are going to have to get me someone to talk to, well the nurse called and said with a loop illeostomy the stoma has an opening for the stool and another opening for the drainage, this was all NEW to me! She said the nurse knowone ever explained this to you, I said NO of course not why do think I am calling I thought something was seriuosly wrong!! Again the nurse could not believe it!!! Believe me, me either its like what else are they leaving out?? I was so angry when I heard that knowone cared to share this information to me, unbelievable!!! At the same time I was also relieved that this is supposed to happen.Anyone ever herd of this bull?

A loop ileostomy is like a not quite cut in half intestine. Think of a garden hose. If you cut almost through it, and bent it back, so the two holes are side by side, and the rest of the hose is behind them. That's a really basic picture of a loop ileostomy.

Where is your ostomy? I'm confused, you said "Well as I was trying to put in on I noticed drainage just like the same out of my butt it was coming out where the stool comes out it was coming out at the bottom of my stoma towards my vagina." My ostomy was no where near my vagina!

The one hole in the intestine of the loop is where your stool comes out; the other side is the part that is the top of the intestine attached to your pouch - it is still functioning intestine, and will produce mucus. Is that what you're saying? You saw the same mucus at the stoma site that you see coming out of your resting pouch? That wouldn't be totally unheard of... I never saw mucus there with mine, but my stool output was so high, I doubt that it would have had time to not be mixing together.

Hi Rachel,
By the way, I have an older sister named Rachael! My stoma is located on the lower R side on my tummy located about 2 inches below my belly button. The reason I explained it that way previously is because when I called my Dr., whoever answered was not getting what I was trying to tell her, until I used the word vagina!! Everyday is a learning curve with this but I can say I have done OK. Things just might be a little better if I was properly explained the surgery. I saw her 2 different times with questions before proceeding with the surgery. Im just a little pissed all that worrying and frantic phone calls was for nothing, and just added extra stress that I really dont need right now. Again, when they finally called the nurse was very shocked that knowone offored this important information to me or my husband. WHAT THE HELL???