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Hello Everyone, I was diagnosed with Crohns a couple of years ago. I am now 45. My symptons have been mostly mild. But when it comes on, it comes on bad. I have lost track of time, however, I think I was on steriods about 2 years ago for a few months, which helped ease the pain. My doctors have been keen on getting me on medication. And I have always been against medication, believing that once I was on medication, I would end up being on it for life. 

Anyway, a recent episode and a meeting with a speciacilist who persuaded me to go medication. She basically said, if I kept on avoiding medication then my internal damage may get to a point where I may need surgery. The thought of needing surgery at some point in the future scared me. Even though I have what I would describe as mild symptons of Crohns, if she thought I should be on tablets, then I assumed she knows better than me.

Basically, although I have blood in my stools, its not every day. My stomach pain comes and goes. So, I will have months of being okay and then a month or a few weeks of pains and dhiarea. I have considered these symptons mild compared to the symptoms of other people - which I have only read about since I don't know anyone else who has this disease. However, my symptoms have effected my life in a big way and has forced me to changed many of my life plans. 

I started on 150mg Azathioprine about 3 weeks ago. I was told if I was successful on it, I may need to stay on it for the next 5 years to life. I was given the run down in detail about the various symptoms/side effects of this medicine. The first week I was normal. Then one day I felt sick. The day after, I started getting constant headaches, and then very violent vomiting. The next 2 days was  violent vomiting and constant headaches, and not being able to keep any food down. My face was swolen, I was so exhausted I couldn't leave my room. In the end I emailed the medical team and decided the medication wasn't for me. They were understanding and said that the medication is not suitable for everyone. 

Since stopping about a week ago, I have been suffering from fatigue. I was only able to eat a descent amount of food 4 days after stopping. I am still exhausted a week later. I am hoping the effects of the medication will soon pass and my normal energy levels will return hopefully within 2 weeks of stopping.

I regret trying this medication. It felt the cure was worse then the disease. I would be interested to hear from anyone else who has tried this medication and stopped because it didn't suit their body. Were there any consequences for you? If so, what?

Thank you.

Reply posted for Louise90.

Hi Louise,

Thank you for taking the time to write a reply. Yes, your reply helps.

I have been going crazy with regards to the fatigue.  have always been a very high energy person, and since getting diagnosed with Crohns and getting these periods of fatigue that seems to go on forvever.

I am happy to hear that are feeling better and things working out. I have always wanted to avoid long term medication - because I believe once you are on medication, you end up needing them for a very long time. I am not anti immunisation or anything like that, just want to avoid toxins as much as possible. But I have had to accept the reality that with Crohns I am not going to have much of a choice. 

I am trying to do some research to see if there is a way to find a "liveable solution" using food/diet. I am struggling to find comprehensive info out there. Although this forum is great, I find it a bit frustrating as its very difficuolt getting replied to threads, and sometimes you have to wait weeks, and the notifications links don't always workl. 

If I can find a middle ground using food I want to publish it online so that others can benefit from it. But it's hard getting responses from people to see if anyone has had any success with foods.

Anyway, thanks again. 

Reply posted for RyanLondon.

Hi, I also had a pretty bad reaction to Azathioprine and have refused to be put on it since. I also suffered with incredible fatigue (I fell asleep standing up at work at one point) Suffered with nausea, hair loss and a lack of appetite also. We ended up referring to them as my zombie meds. I refused to take them any longer and my consultant (who is really fabulous) tried me on a few mixes of other medications such as sulfasalazine and pentasa. I did have to dip back onto steroids on a couple of occasions. I can't say how long it took me to lose the side effects, could have been a couple of weeks, maybe slightly longer. I am now medication free under the strict instruction that any niggle is reported immediately and after a capsule endoscopy to make sure I was healthy enough. This is purely due to my body hating absolutely everything we tried and me being well enough to take this path, we discussed humira if my condition were to get to the point I needed to be back on medication Hope that helps a bit Louise