Hi. I'm "new" to the forums in that this is the first time I've posted. I've been reading for months as I've had my colon removed, my j-pouch made and finally connected about a month ago.

I'm sort of at a loss right now. I'm having a hard time adjusting to the pouch (really missing the pain free days my ostomy gave me) with lots of burning and trips to the bathroom.

I kind of feel lied to when both my GI and surgeon told me that having a j-pouch meant I wouldn't have to take meds. Now my surgeon is basically telling me I have to take imodium in order for my j-pouch to work right.

I know it's not such a bad medicine, considering I was taking remicade only a few months ago, but it is medicine, especially in the large quantities he's recommending.

I hate how it makes me feel. If I take two pills twice per day (the most I've been able to make myself take - he recommends two pills three times per day) my insides ache and are sore the next day. However, if I take only fiber, I am constantly running to the bathroom and my skin suffers for it.

I guess my question is... is there anyone out there who started out like me but is now able to live without drugs?

If I'm going to be popping pills again for years on end, I'd definitely like to go back to my ostomy.

Sorry this was so long. Thanks for reading.

Hi lulugirl,

I have had my pouch for 20 yrs, and I still take immodium daily ( 1 in the am, and 1 in the pm before bed).

To answer your question about drugs, Me personally, I am not able to go without them. You will have to decide for yourself what works best for you. I don't think that anyone can give you an answer as to what will work best for you. Trial and error will help you determine what works best in your situation.

The jpouch website is very helpful because it gives people and opportunity to see a wide range of experiences with the jpouch. In the end, what works the best for each individual depends on a number of factors. This site will allow you to gather information from the experience of many others, and hopefully, make an informed decision about your own care.

God Bless,
Markus

I have been taking Imodium for 16 years. But, initially I took 8 a day and now take 4 a day. I also now take AZulfidine and Simponi (used to take Humira), but those are for enteropathic arthritis, not pouch related issues.

My point? There are no guarantees. Why should you assume you'd never need drugs again? I guess if your surgeon led you to believe that, it would be disappointing. But, in the grand scheme of things,having to take a bowel slower for better function is amall price. You could have other complications or other unrelated issues that would require medications. If you put it in that perspective, it seems reasonable.

Give it more time and you may be able to wean off of it. It is too soon to tell right now.

Jan

Jan is right -give it some timne to adjust. took me a full 18 months to adjust but it is worth it....'good luck

You are WAY early in the recovery process! You need to be more patient and lower your expectations in these early days.

I think most of us have taken both fiber and bowel slowers in the first few months. You have to work out for yourself the amount to take and when. Not everyone is the same. I also didn't like the feeling I got from imodium/lomotil so I adjusted the amounts and times I took it until I didn' have that backed up feeling those drugs gave me.

In time you may find you don't need anything. I had surgery about 11 years ago and for the past 10 years I rarely take imodium/lomotil and I get all my fiber from food instead of from a can. Be patient.

Sue

I have never taken imodium even right after surgery so I would say it's an individual thing. You may need it now but there is a great chance you will not need it down the road.

Imodium use varies considerably depending on the individual, and a lot of it is trial and error. For those who do use it, the number of tablets also varies considerably. Some people do find that they need to continue taking imodium to regulate frequency. Other people find they do not need it. These days I take it only very infrequently, and in fact, I've never taken it regularly. Although my surgeon said I could safely take up to 6-8 tablets daily as needed, he preferred me to try without anything at first, which I did. In the first 6 months I did not take any at all. After that, as I got more used to my body's own routines, I started to use it only when if I wanted or needed to slow myself down. I take imodium now only prophylactically, such as before a long car trip, or when going to an event like a wedding where I know I won't have regular access to a washroom. More rarely, I'll use it if I find my frequency has increased for some reason, or if I get diarrhea. On those occasions, I might take between 1-4 tablets in a 24 hour period. I've never taken the full 8 tab dosage. In general, I can go from one week to the next without having to take any at all.

This message has been edited. Last edited by: Spooky,

Thanks for all of your replies. I know it is way early in the process and that everyone is different. It is comforting to hear that not everyone is dependent on them, though.

My big thing is that I really do feel I was lied to and I'm not comfortable with that. If I had the information that I had now, I probably would have gone ahead with a permanent ostomy. I developed UC when I was 25 and in the four years I had it, it was never under control. At this point I'm tired of stuff not working and if after the one-two years it takes to normalize with this pouch I decide to go back to an ostomy, it's just that much more time that was taken away from me.

I developed UC 7 months after I was married and my husband and I haven't had the opportunity to start a family yet. That's probably the biggest thing that's adding to my impatience. I feel for everyone out there who has trouble getting pregnant, but I wish I could find a support group for people who are waiting to even try.

Anyway, thanks again for your feedback. I'll try to cool it and continue to experiment with what works for me.

Hopefully, with time, you'll get over your anger. I also hope you have shared your feelings with your surgeon. If not, you should. He deserves to know the impression he gave you about this surgery, so he can either change his explanation for future patients, or explain to you how you misunderstood him. My surgeon probably was over confident also, but I later learned that I was his first patient to develop complications. Being a nurse, I knew things can and do go wrong, and I did my own research too.

Another thing to remember is that an ileostomy is not without its own challenges, so you cannot assume that had you made that choice, you would have been happier, even though life seemed carefree when you had one. The hard truth is that there is no perfect surgical option for UC. I guess the good news is that if you find the j-pouch is a failure for you, you know you will tolerate an ostomy well. That is a fear I have, since I've never had an ostomy.

That said, I can certainly understand your frustration and anxiety about having to put off your family planning. Many of us here have had illness get in the way of our lives. Be sure to go to the women's forum to learn and share information about pregnancy and other women's issues. You definitely are not alone.

Jan

I am 10 years post takedown and take no regular meds for j pouch issues. I have no j pouch issues! Every now and then I find the need for a couple of Imodium. The few times I've had pouchitis, Flagyl takes care of it. So...nothing on a regular basis.

so those that take imodium every day... how many times do you go to the bathroom vs. when you don't take it? Just curious.

6-8 times/day with Imodium

8-16 times/day without

Jan

Perhaps you should look at this as something temporary (and yes, it may not be temporary). But if you had some other illness you probably wouldn't be concerned about taking medications. For instance, if you came down pneumonia and had to take antibiotics for a period of time you'd think nothing of it.

If you had heart by-pass surgery and had to take medication to keep things running smoothly you'd probably be okay with that because it's better than a heart attack.

If you take vitamins, you probably think nothing of it. The point is, that even healthy people take supplements or medications. It just adds to our quality of life.

Just because your doctor is recommending imodium, that doesn't mean you have to take it if you'd rather be med-free.

One other thing to consider is that your displeasure with what you were told might also be a symptom of PTSD. Anger is often an effect of PTSD. Some of us went through that after surgery. It sneaks right up. Talk with your doctor about that as well. And yes, sometimes a course of anti-depressants can smooth things out but it's not forever.

If you truly think that life with an ostomy would be better for you then, by all means, go back to it. There are truly advantages to each solution. I wouldn't have any problem going back to an ostomy if I had to.

Please keep coming back and letting people know how you're doing - you'll get some wonderful advice.

kathy

Hi! The first months are the pits. It does get better so hang in there. Taking immodium is a personal choice- how much do you hate being in the bathroom versus how much do you hate medicine? There are times that you need to take it ( ie.very watery output). Taking immodium is different than UC meds. Don't take your UC meds-nasty flare.Don't take your immodium, more trips to the bathroom (not more bleeding, not worse inflammation,). I guess what I'm trying to say is the UC meds were to save your life The immodium meds are to make you more comfortable

With any luck, you will be noticing marked improvement in function over the next 8 to 12 weeks and then continued improvement over the next months and even years.
I did try immodium and lomotil as well as metamucil in the beginning--the beginning weeks and months are so hard that you have to try something. I did not like how immodium and lomotil made me feel--it did decrease my trips to the bathroom but it made me very aware of the pouch if that makes any sense. I also got a headache from it. I used metamucil once or twice a day for about a year. I have had my pouch for almost 13 years and I do not use anything. IN fact I would rather my output be thin so i feel like my pouch is empty. I do get up at night to go the bathroom which I guess is a bit of pain but like Kathy pointed out in her post--most people deal with something or other. I am not sure how many times a day I go to the bathroom--maybe 8?? I feel good and am used to it so it is not an issue for me. It has become "normal" for me.
It sounds like your surgeon lily coated things. You can feel good and go on to lead a great life with a j pouch but that does not happen over night by any means. The first months are difficult and it is best to know that going into it. there are no perfect solutions and you shouldn't have been led to believe there were but with a bit of luck you can do really well with a j pouch.