New to Forum

Hello, I am new to the forum. I was dx'd with IBS and UC well over 20 years ago, don't actually remember when. I am a 62 year old woman. Originally I was on azulfidine  & for many years it worked, then went to Acacol, then Lialda and now on Apriso 4 tabs daily for over a year. As each one failed I was changed to another. My last colonoscopy last spring was negative which shocked even my doctor and for a good 7-8 months I was doing really well with minimal diarrhea and semi formed stools. My Dr. had been doing them once a year for the past couple years on me since I was so up and down.

 

Three days before Thanksgiving I just went to bed one night and the next morning woke up with horrendous diarrhea and from that point forward was going 10-15 times a day, even waking up in the middle of the night having to run, and it was all water. Plus the second I ate it went right thru. I couldn't leave the house for weeks because I had no idea when it would just come out so the couple times I HAD to go out I just didn't eat anything from the night before and after my morning explosions and nothing being left I would venture out petrified I would poop my pants somewhere. This is a horrible way to live!! It was so draining and I was feeling very fatigued as well, although I was very careful to drink a lot of water with electrolytes added. I work from home so luckily was able to continue to work during all this. After a couple weeks I called my GI doc who told me to take 2 Imodium twice a day and 2 tablespoons of Metamucil two times a day, but the only thing I got out of that was that eventually it slowed down to like 6-8 times a day. I began to worry that I had some kind of parasite or something, or even salmonella (because I have water turtles) so he had me do all kinds of tests (but telling me that he didn't think I had anything) but it was all negative so it is obvious it was a huge flare. He put me on three weeks of prednisone (thank the Lord!) and it got me to my baseline of about 5-6 times a day. BUT, when I went to see him last week he said that he was pretty positive that as I came off the prednisone it would all come back again which is not what I wanted to hear. He has been telling me for some time that I am most likely going to go on the "big guns" fairly soon and so when I had the remission period I was incredibly relieved.  Well, I guess I am there now though. He wants to put me on Imuran and quite frankly this stuff, as well as Humira and all the other ones scare the living daylights out of me. I have a very strong medical background which may not be to my advantage because it means I look at the side effects way too close. MY GI doc is wonderful, patient and understanding, spends a lot of time with me, and knows that I am petrified of going to the next level but is insisting that I am not going to have a choice as not treating the symptoms I am having is more dangerous. And he was right, coming off the Prednisone the diarrhea is returning as is the frequency although not as bad as before because I still take the Imodium and fiber. I have what is called "Autoimmune Syndrome" with multiple subsets of auto immune disorders as well but they are all relatively under control and actually the prednisone course made EVERYTHING feel better. But, I will not go on long term steroids. This whole thing sucks and it is nice to find a place where when I say all this other people understand. My son (34) is freaking out about my taking the Imuran and doesn't want me to, and my daughter 42 is in the midst of her own poop crisis currently being evaluated by my doctor for the same issues.

 

So how many of you have been on Imuran and how many of you have had side effects?

How many of you refused to take any of these kind of meds and if so what did you do instead? Also, I read some stuff about probiotics but no one has told me I should be on them, should I?

 

Have4Paws

Post Edited (Have4Paws) : 1/4/2016 12:42:54 PM (GMT-7)

OK welcome to the forum
firstly, get retested for C. diff infection (esp cuz your daughter is going through some issues as well and I might guess that you were near each other on the holidays or thanksgiving)

Imuran or biologic medications are far safer than the inflammation caused by flaring
and they are also safer than prednisone or steroids
although they do have some serious side effects listed they are very rare
entyvio does not seem to posses the same risks that other immune modulators have
in your personal case I would not recomend entyvio for the following reasons. 1) you have other immune conditions and entyvio is gut specific so it will only help your IBD and nothing else 2) it takes a bit of time to work (remicade seems to work the fastest in those who respond) imuran will also take some time to kick in and that would require a steroid taper to carry you over until the meds kick in (about 2 months for imuran)
if you decide to go with something that will require steroids i recommend something like budesonide as it is not as systemic as prednisone and does not have as many side effects
it is also easier to get off of

I am on imuran and I got some side effects in the begining which were mostly alleviated by taking it will a full meal

there is no research with RCTs that indicate probiotics are effective
many find success iwth them and some actually get worse
it also varies for each specific probiotic in many people
if its something you can afford and want to try I would go with VSL (if you get a script insurance may cover)

those who get C. diff should probably take florastor but again, there is no really strong statistical evidence for it

imo 4paws, your uc hasn't or isn't being managed well - it's probably to time to step things up a bit -

definitely get the c-diff tested again -

have you ever or are you currently using rectal meds ?

and yes, you should be using probiotics - it can be a challenge to find one that works for you - do some reading using the forum "search" function -

If it helps any I have been taking Imuran for two years now. 150 mg/daily. I have no side effects other than a general tiredness, and even that I am not sure is from the Imunran.

When you start it, they monitor your blood work weekly for a short time, and then monthly if all is fine. It seems to be quite safe and a very well worth a try I would say. My blood work has always came back perfect.

I do hope you chose to try some medications versus leaving things to fester and perhaps become worse. You can always stop the medication(s) if you are having trouble with them. Personally, I think it's awfully risky to try a dietary or natural approach alone without meds. Been there and done it... as have many.

Many, many thanks to all of you who responded to me and offered support and ideas! It really means a lot.

I am at a stand still right now trying to figure out what I want to do. I have been doing some research also and am beginning to wonder if I truly have UC or if it is just severe IBS. In all the things I have read they say UC has bloody diarrhea and pain. I have never once had blood in my stool and no pain at all other than my rectum obviously gets sore from pooping so much. My last Colonoscopy was completely normal. That may be because I was in remission or it may be because I don't really have UC. I don't know, I know I am probably just in denial but I am going to talk to the doctor about it and see if trying IBS meds first would be ok just to see if it makes a difference.

Despite those of you who are telling me that you are on Imuran and having no issues I just can't seem to get past the possibility of hepatosplenic T-cell lymphoma (HSTCL) which is quickly fatal.   It just petrifies me that I could be the one. I know that isn't maybe rational but honestly it is a crap shoot (no pun intended), we don't know who that one will be.

I am, since tapering off the prednisone, having more frequent diarrhea, now about 6-8 times a day but that is better than 15. The Imodium and Metamucil help a little but I still have to go right after I eat ANYTHING no matter how small so yeah being out and about is not really something I look forward to. If I have to be out I just don't eat for many hours before and take a bunch of both the fiber and the Imodium. It may or may not work and I am becoming quite familiar with bathrooms all over the area I live. I have my little emergency kit I carry with me all time time now with "Poopourri" :) extra underwear, baby wipes and feminine hygiene products in case I have an accident. (Sorry if that is too much information) but I wish I didn't have to worry about it.

Sigh, well I will update you all when I figure out what I am going to do. Thanks for all the understanding and support !!

if you have never had blood, your IBS theory could be correct. Even c-diff usually causes pus or blood.

Maybe try the new IBS drugs, but don't skip next year's scoping.