Colitis then Crohns

[Gutsy]

Hi Everyone, I'm 47 years old, got very ill last year, after the usual several misdiagnosis, finally was diagnosed with Colitis. Went on Asacol, 2 x 800 mg three times daily plus 4g daily Salofalk (messlamine enema.) Started feeling better but side-effects included my hair started falling out like crazy and my scalp was very itchy, also caused liver problems. Reduced slowly to 2 x 400 mg twice per day plus Salofalk every other day, seemed to be keeping things in check for several months. New doctor now says it's Crohn's which caused gallstones. Same doc suggested Imuron but I was feeling pretty good so reluctant to try. Had my gallbladder removed four weeks ago which is causing another flare up. I hate to up the Asacol again because of the side-effects, doctors aren't really any help, so if anyone has advice I could sure use it.:sign0085:

 

[crohnicaly stinky]

Gutsy, Did they do a biopsy when they did the colonoscopy? The pathologist can see if it is colitis or chron's. At the end of the day it's really sort of the same thing, colitis tends to be in the large bowel and chron's in the small, but it can be anywhere. Crohn's is inflamation of all the layers of the intestine where colitis is more the mucosa. I'm going from memory so this may not be exact.

Your dosage seems pretty high on the Asacol. I have chrons in my small and large bowel and I take 400 X 4 once a day of Lialda, same active ingredient as Asacol. 2X800X3? Plus the enema? Others can chime in but my gut reaction is wow, that's a lot!

Tomorrow I start Humira because my last scope showed I stll had inflammation. I was diagnosed a year ago March and I am on my third doctor. Don't feel bad changing or going for another opinion. We're lucky that we have our whole lives to enjoy this disease! lol The point is, it is important to find a good doctor and you must educate yourself.

Good luck!

 

[ameslouise]

Hi Gutsy - Sorry to hear about your recent gallbladder surgery and current flare up! There are still many drugs out there that you can try. I would question the doc about upping the Asocol, especially since it caused you liver troubles.

You can read around here about different experiences with different drugs that are out there.

Good luck - hope you can find something that works without so many side effects for you.

- Amy

 

[David]

Hey Gutsy,

Welcome to the forum! I'm pleased that you're here, I hope it helps you out

I'm afraid that I don't have any advise for you but wanted to chime in and offer you a little support and some *hugs*. It must be tough to be in a flare after gallbladder surgery, I'm sorry you had to go through that. I hope you're able to get that calmed down soon.

I wish you all the best. See you around the forum!

 

[JetWhite]

Hi Gutsy and welcome

It sounds like you're having a very tough time :hang:
I have UC and was initially put on Pentasa and just kept having flare ups. I queried this type of Mesalazine a few times and eventually they gave me Asacol which made perfect sense because it is designed to release much later, which I need because UC is just in the colon, not the small intestine.

If I understand correctly there are a few forms of mesalazine with different delivery methods, maybe see if you can try a different one, I think Pentasa is the most easily accepted.

I am now also on Azathioprine and have heard that, amongst the many side effects, you can lose hair but I had not heard of that with Asacol but we are all different and I'm hoping I'll be okay on Azathioprine.
If it's any reassurance I am on 1200mg of Asacol twice a day, as well as the Aza so it maybe that your dose is not a worry

Good luck with it all and I hope you find a suitable drug for you soon

 

[Gutsy]

Pain on the left

Thank you for your generosity in replies, very helpful, this place is the best source of info on Crohn's anywhere.

Just wondering if anyone else has had gallbladder out and if they started getting pains after that on their left side?

With respect to Asacol, does anyone notice they go right through sometimes?

In reading around here, I am starting to suspect my hair loss was related to being seriously ill and hair cycle interruption - thinning, as opposed to side effect from Asacol, although if you go to askapatient.com and enter Asacol, there sure are a lot of people who complain of hair loss. Either way, I'm good as my hair is growing back now, so that's a positive!

 

[teeny5]

I was on Asacol and the enema for a bit. I actually ended up with more pain. I too had my hair falling out. I actually have Crohn's Colitis...just means that the Crohn's is only in the large intestine. There are many ways that they can clasify IBD to indicate where it occurs. I would talk to your doctor about your concerns with upping Asacol. There are many drugs available now to treat Crohn's and there may be a better option for you.