Crohn's Disease Forum » Your Story » So, I got Crohn's...

02-01-2018, 03:25 PM   #1
Join Date: Feb 2018
Location: Belgium
So, I got Crohn's...

Hello, my name is Sander and I'm from Belgium.
A few months ago I felt a little nauseous and had some pain in the bottom of my belly. I also felt like i had a fever so I rested for a few days hoping it would go away. The pain got worse and was moving to the right side of my belly so when I talked to friends they told me it could be my appendix. I went to the doctor and she sent me to the hospital immediately. They took some pictures and saw that I had an infection in my small intestine. After a Colposcopy and an MRI it turns out I have Crohn's disease. When I think about it I have been thinking for a few years that there was something wrong with my intestines because I had to go to the toilet more then other people and sometimes really urgent out of the blue.. I also have been very tired and low on energy without knowing what was causing that. I guess I have been having this thing for a while now and that was what was causing these things. Now the doctor from the hospital prescribed me pills called Azathioprin Sandoz. It's 100mg tablets and I should take 1,5 every evening. I went online and found that these pills could have some horrible side effects so I actually prefer not to take them. I am looking online for other solutions and can find alot about certain diets. What do you guys think? Is it best to take the pills or can I try an alternative way?
I think I got a mild version of Crohn's cause most of the time I feel fine. I try to eat healthy but I could eat healthier cause sometimes when I don't have alot of time I cheat and eat fastfood. Right now I am writing down everything I eat and how I am feeling in general. I noticed that after the tests I sometimes feel a little nauseous but maybe that's just because i pay more attention to it. Also when I drink (lots of) alcohol, the next day I have to go to the toilet alot, maybe like 3 or 4 times, on a normal day 1 or 2 times a day. I also read that drinking coffee is bad. Now I have difficulties staying awake at my job, i am sometimes so tired that I go to the toilet and rest my eyes for a few minutes. I used to drink coffee to get me through this but now it's really hard. I am an engineer so I sit at my desk the whole day. I know I have alot of questions but I'm new to this and trying to find people that have the same and can give me some advice...
02-01-2018, 04:21 PM   #2
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Join Date: Oct 2013
Location: vienna, Virginia

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I would take the medicine your doctor prescribed. You can also talk to your doctor about your concerns about the medicine. I think it is good you are keeping track of what you eat and how you are feeling. Everyone is different. I myself have trouble with coffee but I don't think it affects everyone. Have you been tested to see if you are anemic?
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-01-2018, 07:09 PM   #3
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Join Date: Jul 2008
Location: California

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Iím ok with one cup of coffee a day, if I work late I drink tea instead which gives me the caffeine boost I need without so much acidity.
I would take the meds, discuss any concerns with your doctor. Diets seem to help some, but not all people so be careful when relying on diet alone.
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.

"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
02-01-2018, 08:15 PM   #4
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Join Date: Jun 2016
Location: Cheshire, United Kingdom

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I agree, itís best to take the medicine prescribed by your doctor, they will have weighed up the risk vs benefits before deciding on this choice. If you have concerns they will be able to explain the risk vs benefit in more detail with you.

Also I would advise asking for your iron to be checked along with vitamin B12. Deficiency in both of these can make you very tired (I remember it well!)

I also find coffee doesnít agree with me which is horrible when you feel so exhausted. I would advise going to your GP who should be able to do further tests now you have been diagnosed and get you on the right path.

Good luck and let us know how you get on!
Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
02-11-2018, 03:06 PM   #5
Join Date: Feb 2018
Location: Belgium
Has anyone used the book 'listen to your gut'? Seems interesting
02-11-2018, 04:10 PM   #6
Join Date: Feb 2018
Yeah, it doesn't look like any "good" medicine (without crappy side effects) gets prescribed for this, but my doctor said diets generally won't fix the problem on their own and the intestines will get more damaged while you wait. I am not familiar with that specific drug though.

As far as the tiredness, I have noticed it too lately and have also been cutting out coffee. My doctor did check my iron levels and they were a little low. He prescribed me iron supplements (simple over the counter vitamins) and they seem to help a bit. But check with your doctor about it because appearantly too much iron is toxic for your body, so you don't want to take too much.

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