Have UC and IC-- what meds do you take?

[cincurr]

I have just been diagnosed with UC and will be seeing the doctor in a few weeks, I would like to be well informed before then. I have been on several websites and seen all the drugs that can be prescribed and now I am wondering what will be the best in a patient who already has problems with immune disorders. Please let me know what you take if possible.
Cindy :dizzy:

[Katrina]

:grouphug: Very sorry about your diagnosis. Please don't let my case scare you with UC....I am very, very unique in how bad my Inflammatory Bowel Disease is. :grouphug::grouphug:
Ok my current diagnosis is ulcerative pouchitis....since I already lost my colon to UC and they made a pouch....which has UC. I HIGHLY RECOMMEND PROBIOTICS! The difference my probiotic has made in my symptoms is ammazing. I am on antibiotic treatment...I alternate weekly between Cipro and Flagyl. I am also on Asacol....I think about double the normal the normal dose...not sure it is worth it.
I doubt you will start with stuff like that...first treatments are normally suppositories and safer things....maybe asacol and probiotics since esp the probiotics are very safe. I don't respond to suppositories so we gave up on them a long time ago. I know the next step for me if what I named doesn't work is immunosuppressives or (dang I can't think of the word right now I'll come back later). (that was all just UC stuff) Oh, and I am taking iron since I am chronically loosing blood in my stools.

I am on a lot of vitamins to help boost my immune system and although they help some things not sure if they help everything.

The good news is in most cases the diet isn't as strict as IC. Oh, and although there are big risks with antibiotic treatment....I did think in the beginning it helped my IC some. Not anymore but at least it did at first for bit.

Am I missing anything you wanted to know???:grouphug:

[Betsie]

I too have this lovely combo. My IC has been in good shape for some time now, however, it can act up a bit when really struggling with my UC.

I was Dxd in October after battling it since March. I had assumed it was a stress issue due to a recent family death. It got pretty ugly, very painful and I finally contacted my Dr in August. I then went thru a myriad of cultures, etc. to rule out other possibilities. I am and have been a GI patient for many years.

I am far from out of the woods and am monitered constantly. I won't say I am in remission, but things are slightly better, or at least predictable. My biggest hurdle is when I have to veer off the course I have gotten used to...then things get out of sync and I can get quite miserable. :bonk:

I currently take Pentasa and Entocort (steroid). It's not perfect, but it helps. I also have Lomotil, which is a bowel suppresent and I try to limit the use of this to needing to be away from home, etc. This is an extremely frustrating disease and one that should not be dismissed. However, I find that eating anything is a major challenge and understanding all the options in treating it are confusing. :rolleyes:

My biggest problem now seems to be the impact on my bones (proven by a bone density test recently). Steroid use that is ongoing has an impact (or it can and probably has in my case) but my lack of nutrition is my biggest hurdle. With a recent DX of osteopenia, I am hoping to find ways to increase my foods, nutrition and now have to take calcium supplements.

It isn't the end of the world, but get lots of info and eat well and get exercise...I am learning all this the hard way. It can be an isolating disease, but in time I think it can be something we learn to live with.

I wish you much luck in getting good care and a regimen that works for you. :)

[Katrina]

:hi: Betsie!
steroids was the word I couldn't think of....man me and my memory.....we are trying hard to avoid them in me because I had a hysterectomy 2 years ago and am only 29 now...and am skinny, and not very active.....so high risk already...am taking treatments now to prevent what my doctor thinks may be inevitable things weren't great at my last bone density test and I am not yet doing steroids.

[Betsie]

Katrina!

I HATE the steroids - the ones I am on are at least low in side effects...but I too am young to have bone issues. Much older than you, but not thrilled to learn this. I have so far stayed off of prednisone....a life saver for sure, but a steroid I don't mesh well with...hoping to get to remission before my Dr goes for tough love! Don't get me wrong, it is a great drug for many reasons, and as we speak is saving my friends life...but it has a devastating effect on my body, so I am hopeful to stay clear of it unless truly neccessary! :rolleyes:

29 years old is WAY too young to have bone density issues already, but I do understand that your IBD issues are far more serious. I hope you are able to somehow get past the worst of this and get your body in tip top shape! I know all too well how the achiness from loss of muscle tone feels, so my heart goes out to you! hang in there... ;)

Cindy...be proactive and learn all you can, this is not something to ignore, but try to keep normal life in perspective too. :) Many UC patients are very successful with proper treatment and common sense.

[cincurr]

Thank you Betsie and Katrina :) I have checked on all the possibilities of medication and the side effects--- which are scary--- and will ask lots of questions when I see dr. I have such a hard time with what I can't eat now, I may ask my dr. what he thinks about seeing a dietician. Went this morning and had a blood test done-- one he didn't do a few weeks ago when they drew blood then-- on the script it said IBD first stage ( I am not sure what they are looking for). I have been having these symptoms for 3 years and he finally is believing me it is not just IBS. In the meantime, everytime he wanted to do a colonoscopy or sigmoidoscopy I was recovering from back surgery. I feel like a 90 year old some days and I am only 50!!
It's nice to know I am not alone. Thanks again.
Cindy

[Dawn1216]

Hi Cincurr! I also suffer from UC and was just diagnosed with IC. I had UC pretty bad only because I had a doctor who didn't know what they were doing. I went through some rough patches but now I am in remission. Knock on wood. Currently for UC I take: Asacol (400mg, 2 three times a day), and Purinethol 50 mg, once a day. This was put in place of steroids I was on for a few months a couple years ago. I am monitored every 3 months with blood drawn to see that my colon is ok and to check my blood count ( I was once anemic, with about half the blood in my body as I was supposed to) again a bad doctor, you will be fine.

Now I was just diagnosed with IC a few weeks ago! Ahhh! Another chronic condition! I am on Atarax, an antihistamine and Detrol. I know it will take a while to feel better as it did with my colitis. My main complaint about IC is the urethral tingling/burning after I go to the bathroom.

As with diet, it is very strict with IC and UC combined. However I try to watch it but don't totally stress because stress seems to make my UC worse. Oh yes, I am on Effexor 75 mg for anxiety. I used to not be able to eat out because of the UC. Now I am able to do all things I was always afraid of. And i am only 25! I know it is frustrating but please feel free to ask me anything! You have a friend here!

[holles]

i used asacol for non-specific colitis. not sure if they can use it for ulcerative or not. it works fine for me.

[Katrina]

Thanks Betsie :)
:welcome: to ICN Dawn...sorry you have UC and IC....(((((((((((huge hug of support to all of of us with this combo)))))))))))))))))))))Dawn, I was diagnosed with UC at age 10 and IC at age 24...I had both for years before diagnosis. :grouphug: Your not alone and I am always here if you need to talk. :grouphug:

Since these days my Ulcerative pouchitis is way worse than my IC I am really loving this thread....my pouch prolapsed and they think it is because of bad pouchitis...I was recommended by my doctor at Mayo to take a probiotic called VSL#3...you guys may want to research it and ask your doctors about it because it has helped me A LOT!!!!! You will see at their site that it was created for UC and pouch problems. I also got a lot of recommended from fellow pouchitis patients.