• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Treatment routes, side effects and the ultimate goal of remission!

I was diagnosed with IBD about 3 years ago (the doctors have stopped trying to investigate whether I have Crohn's or UC), but I have been suffering with it for at least 5. I spent the first two years taking antispasmodics for IBS after a few doctors told me that was my problem without any physical examination at all. By the time I was diagnosed I was experiencing severe bleeding and was extremely anemic (my ferritin came back as 3 on a blood test at one point - I'm not entirely sure what that means, other than bad).

I was put on a high dose of prednisolone and 4g of pentasa a day, but the pentasa alone has never been enough to keep it in check for more than a few months. I've taken several courses of pred (starting at 45mg), I've taken budesonide, azathioprine and mercaptopurine.

All of this potent medication and nothing has made me comfortable for various reasons. The pred made me feel like a spotty water balloon, not to mention those hellish withdrawal headaches I got every time I tapered my dosage. The azathioprine gave me awful nausea which would result in me doing nothing with my day apart from sitting by the toilet, nibbling ginger biscuits. The mercaptopurine actually helped my IBD a lot! But I started getting huge bruises and had to stop it because my platelet levels had dropped massively. It's only in the past couple of weeks I've experienced real problems with pentasa and budesonide though. I stopped the pentasa after reading that it can cause lower back pain and a racing heart beat, two things I had put down to being a symptom of the disease and anxiety, respectively, but days after stopping the pentasa they stopped too. 2 weeks ago I was put on budesonide as a short term substitute but a few days in my feet swelled, my GP advised me to stop the meds in case I was having a bad reaction.

So currently, I am taking no medication and my tummy is feeling quite temperamental. I get very hungry but after a few bites I feel physically unable to eat but still hungry, I've tried to push past it the last couple of days but I just end up nauseous.

I'm so overdue for a review because after I requested my last appointment it didn't arrive through the post and last week the lab didn't send my blood test results to my GP.

I'm coming here to find out what medication has worked for other people, whether anyone has any home remedies for short term relief of bloating and fatigue until I can see my consultant, just anything that might help? I've heard great things about probiotic treatment.
 

nogutsnoglory

Moderator
Every treatment will get positive and negative feedback. They all have scary side effects but most are highly unlikely to occur. For me the best drug has been Remicade. If you don't want a biologic and want an immunosuppressive med like mercaptopurine you can look into methotrexate.
 
Every treatment will get positive and negative feedback. They all have scary side effects but most are highly unlikely to occur. For me the best drug has been Remicade. If you don't want a biologic and want an immunosuppressive med like mercaptopurine you can look into methotrexate.
Thank you for your reply. I've always been sensitive to medication. What is Remicade? I found that the immunosuppressive qualities of those drugs take a long time to recover from when I stop them. I was contracting all sorts of illnesses even after I stopped mercaptopurine. I understand that a lot of this stuff is part and parcel of the illness itself and the treatments that are out there and that I will probably have to settle for a compromise between health and side effects but I'm 20, (I'm lucky to say) I'm at uni and I will try anything to have a lifestyle that is as normal as possible. I don't got out and drink like my friends do, I don't even plan to start but my housemates go to the gym, they do a lot of revision, get to all of their lectures, they do housework and have spare time to do things they want to do. And even though I try to stay as healthy and active as possible the thought of doing even a third of that stuff wears me out. I just want to exhaust all of my possibilities before I settle for being limited. I know a lot of people have it worse but it's still difficult and if I can find something that instils some normalcy to my life it would be all I could ask for.
 
Top