• 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.

New here so...hello!

Well my story...Around last July I started to feel very unwell I got a silly choke cough,and stomach pains,fever and so tired like I'd never had before(was getting up going to work,getting home going to sleep,waking for dinner then back to bed).So took myself to GP and they decided I had infection so gave me some antibiotics,at this time I was still just about dragging myself to work,anyway after week I went back as was no different,was basically told its only been week,but few days later saw another GP and she decided to do bloods as thought I might have helibactor by now I had gone sick at work,but after week I returned to work,still having bloods done as they showed didn't have helibactor just no idea what was wrong! well I lasted a week at work and was off sick again! GP now had no ideas and I was getting worse,but on a visit to GP I was tachycardia and he had me admitted to CDU. Which turned out to be total waste he told me I had a problem as I was breathing in to much air,and was just run down! By this time I just can't eat a thing,bringing up bile to add to other problems. GP again admitted me to hospital,this time I stayed 2 days and was released being told had to be realeased to have MRI(within 2 weeks) as the bloods showed something wrong but no idea what! Well 3 weeks later my GP told me to go to A&E this time I was in a week and they told me think its crohns and I finally got the MRI done private and this showed crohns,I was released and within week DR from hospital rang and gave me 9mg of budesonide granules,I also following week had to have the lovely backside test! And crohns was confirmed! Just before Christmas I was down to 3mg but starting to get slight pain again so was put back upto 9mg this time tablet form which I didn't find so good as granules.At this time I also had blood test to start Azathioprine,finally 20th Jan I had letter to say I could start Azathioprine.All ok till this Tuesday(4th Feb) started to have the really bad stomach pains again,by Thursday I was unable to complete my days work went home and phones crohns nurse and Friday she told me to stop taking the Azathioprine and Monday she ringing me and I have to go and see Dr at hospital.So now I have no idea whats going to happen up until now I felt I was doing so well,i was able to return to work and do my job,now Im kinda like??? Also up till now work have been ok,they have gave me a DDA but that was to help me,now though im off sick again after taking nearly 3 months sick last year,trying not to stress!
But on a whole I would say the past few months has taught me im a lot stronger than I ever thought!:smile:
 

valleysangel92

Moderator
Staff member
Hello, welcome to the forum :)

I'm sorry to hear that you've joined us crohnies, but i'm really glad that you have found us, this is a very supportive community and it has really helped me over the last year and a bit.

Were you having regular bloods done while you were taking the Azathioprine (Aza)? There are some cases where aza causes liver problems and pancreatitis, so this might be why the nurse advised you to stop it while you wait to see the doctor. The chances of this happening are less than the chances of complications from untreated crohns though, so if the pain isnt drug related, dont let the potential side effects put you off taking them again. It may be that the Aza hasnt fully started to work yet as this type of medication can sometimes take a while to start kicking in.

For stomach pain you can take things like paracetamol, or if this isnt enough and the pain is severe your GP may give you some codine or tramadol, just be careful that they dont constipate you. Stay away from NSAIDs such as ibuprofen, these can worsen crohns and encourage digestive bleeding. Heat packs are good for crampy pain and muscle aches, you can get wheat packs that you put in the microwave, or you can even get heat pads that stick to your skin which are pretty much invisible under clothing, allowing you to go about your daily activities as normal. If you try these, stick to well known brands (such as deep heat and curaheat) dont be tempted by the cheaper prices of lesser known brands (I got horrible burns and torn skin by a sub-standard cheap substitute after only wearing it for half an hour). Also, peppermint and ginger can be very good for settling the stomach.

If you have an issue with the amount of sick leave you need and your work starts saying they cant pay you anymore, you can apply for ESA (employment support allowance) as it covers those who are in work but need time off as well as those who are unemployed.

You may also want to consider keeping a food diary, which can help you to keep track of any link between what your eating and the severity of symptoms. However, some question the reliability of this as some people simply have symptoms because they've eaten, not because of what they've consumed. Generally, if you are struggling with meal, plain, simple foods like chicken, rice, mashed potato etc can be better options. If you feel you are struggling with fruit and vegetables, you could try blending them to make smoothies or juicing them, which breaks down the fiber and makes them easier to digest so that you can still benefit from all the vitamins and minerals.

Trying not to stress is indeed one of the best things you can do, stress and crohns are not very good friends. If you need a rant or have questions, or just need people that understand what you're dealing with, you're always welcome to do so here, we will all do everything we can to answer your questions and support you.
 
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