Advice/support from those that have been through it

[Denise]

Hi everyone,

Well I was diagnosed with "most likely" crohn's in May 2011 after a colonoscopy found a granuloma in my terminal ileum. My doctor want to do a VCE (pill camera) to see if it was elsewhere in my small bowel. Waited until mid July to get the VCE and got the results mid August - no crohn's in my small bowel (minus the terminal ileum), so that is good news. I just saw my GI 2 days ago, fully expecting to go on some type of med. He is talking about sending me for a SBFT since the VCE can miss "stuff". So instead of getting treatment I was sent for bloodwork (6 tubes!). He mentioned that he still thinks it's crohn's because I am symptomatic.

- joint pain
- sharp pain in lower right adb
- decreased appetite
- 20 lbs weight loss since April

I also was in ER in June with signs of a bowel obstruction but I was backed up with stool despite having D. So he also thinks I have severe IBS (diagnosed with that 10 years ago but I was thinking misdiagnosis) on top of CD. So I have been actually taking a laxative.

Anyways, on to my question. He mentioned possibly starting me on Asacol. Now I have done some research and it shows that it may not be effective with CD. So is anyone on asacol that has crohn's in their ileum?? Did it work for you? Also what is the cost of this med in Canada?

Thanks for reading! :heart:

 

[archie]

Hi and welcome. Sorry you had to join us but hopefully you'll get some help and advice here. I wanted to respond as you sound similar to me last year. I was diagnosed with CD in the ileum may2010. The small bowel series will show the extent of thickening in the small bowel and seems to be pretty standard test. I was put on pentasa (I think is asacol) but it didn't fix my damage. I was put on pred shortly after as I became quite ill with the crohns and it made me a lot better. Whilst I was waiting for all the tests etc I did suffer an abscess though so my advice is if you become very Ill (fever , temp, pain, dizziness etc) get yourself to hospital and don't delay (I did).

I got it all sorted in the end and feel great now but it does take time and patience to get the right treatment plan. Hope you start to feell better soon.

 

[Entchen]

Hi Neighbour: Welcome to the forum. Sorry you might have Crohn's! Can't comment on price of Asacol, sorry, but if you do not have 100% drug coverage you might want to look into Alberta Health's Non-Group insurance plan, which is administered through Blue Cross. About $70/month and you'll never pay more than $25 per prescription (3 months filled at a time). I used the plan this summer while I was in between contracts that offered insurance.

 

[Welsh-bird]

Hi Denise. Sorry to hear of the possibility that you may have Crohns.
With regards the Asacol, I thought it was a drug that was given to patients with problems within their large bowel, whilst Pentasa was used to treat small bowel disease. Think they're the same drug but the formulations mean they break down in different parts of the GI tract. I could well be wrong here, but its how it was explained to me when I was dx'd with UC and started on Asacol, but then changed to Pentasa with my new Crohns dx.
Wishing you a speedy recovery.