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Crohn's Disease Forum » Your Story » My story and should I go for Imuran or not


04-05-2017, 07:14 PM   #1
whocares61
 
Join Date: Apr 2017
My story and should I go for Imuran or not

Hello Crohners,

I am 31 years old, recently diagnosed with a mild Crohn Colitis (only colon is affected).

I came to the doctor after couple of months having a flare. Symptoms were mainly mild, though they were getting worse gradually.

After colonoscopy and diagnosed with CD, I've been on a 3 week course of Clipper 5mg steroids. Clipper helped me in 1-2 days already and after 3-4 days I had no symptoms at all.

Afterwards the doctor prescribed me Calitofalk (Mesalazine). After a week I started to have new types of pain in the belly and the doctor assumed it was pancreas side effect, so we stopped with Calitofalk. The day I stopped with Calitafalk the pain passed.

We decided to give it a try without any pills.

After 2 months I started to get my symptoms again. They were mild, but increasing every day. I came for a check up and my colon was inflamed again.

Now I have two options:

1. Since the lightest pills with Mesalazine give me pancreas we need to go to the next level with Imuran (immunosuppressants).
This requires my blood being taken every week in the beginning and the fact that my immunity is suppressed scares me a bit.
2. Take Clipper again for 2 months. Second month I will take it every 2nd day. Then try again without any pills. Doctor says that taking Clipper for 2 months shouldn't cause any serious side effects, since it's a locally working steroids. However, he thinks that most likely I will get a relapse soon (since I got it only 2 months after I stopped taking any pills) and that we just postpone the treatment, but he doesn't mind to try.

The moment I started taking Clipper I felt like the flare passed on the next day. Now taking it for a week already, I have no symptoms at all.

I prefer to go with the second option, since this gives me a chance to be pills free, even if the chance is low. I will try also probiotics and turmeric, since this can't harm. I also know that without any treatment and staying on low symptoms flares and waiting for it to pass can cause problems in the future that can only be resolved by surgery. I would prefer to avoid this of course. Therefore, if I feel that I have a flare I will go with the first option. So my goal is to see if I can stay WITHOUT a flare and without pills for long.

What do you think I should do? Should I try option 2 or go with option 1 already?

When I do have a flare these are my symptoms. If I understand these are mild symptoms compared to others, since they are mainly discomfortable:

- Feel like want to go to the toilet but cannot go, usually bloated or feeling like I have a tire in my stomach. That's not exactly constipation, because I do go 2-3 times a day.
- After BM for up to 1 hour feeling like my bowels are exhausted, the more I push while BM the more exhausted it feels afterwards.
- The longer after BM the less I feel something. Usually all the discomfort is only after food and after BM
- Stool is not solid, explosive in the beginning, then not liquid, but not solid. Like small pieces coming out when I push (sorry for the graphics .
- If I overeat I immediately feel like I need to go to the toilet. It's not urgent, but I will feel better if I will go. This is also when I am not in a flare.
- There were some cases here and there that I also had whining mild pains (like not sharp) in the night and a feeling that I wanted to go toilet, but I push and push and nothing comes out. Not painful, but not pleasant.
- Weirdly but the doctor says that if I have CD Colitis then when I have a flare it must come with diarrhea, however in my case it feels more like a constipation with not a solid and not a liquid stool. Not the typical diarrhea for sure.

Things that help:

- That's weird, but when I am going out I rarely feel the discomfort at all, even after food.

To ease the feeling of exhaustion after BM:

- Greek yogurt with honey
- Peppermint tea

Thanks for your opinions!

Last edited by whocares61; 04-05-2017 at 08:13 PM.
04-05-2017, 07:55 PM   #2
cmack
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Location: British Columbia

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Hi whocares,

Welcome. I'm not sure of the answer. I can lend you an ear if you need to talk or vent. I would go with whatever the doctor decides is best. You obviously have to do something. The longer the inflammation, the worse the damage can become.

I welcome you again, pm me any time,

cmack
04-05-2017, 08:26 PM   #3
ronroush7
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I would try no 1. I don't know anything about clipper steroids. I have been on imuran for years.
04-07-2017, 08:59 PM   #4
whocares61
 
Join Date: Apr 2017
I would try no 1. I don't know anything about clipper steroids. I have been on imuran for years.
Steroids is the standard way to quickly go back to a remission, as far as I know..

How is your experience with Imuran? any side effects?
04-07-2017, 09:03 PM   #5
ronroush7
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They check my blood regularly. I think it has caused my hair to thin out some.

04-08-2017, 07:17 AM   #6
my little penguin
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Steriods are a med to induce remission
But they are not a maintenance med
Which means when stopped the inflammation tends to return
And they are needed again
Prior to immunosuppressants and biologics
All they had to treat Crohns was steroids
Which were cycled on and off
Allowing inflammation and scar tissue to build up resulting in surgery for some not all
As well as side effects from steriods
Eventually the steriods become less effective


That said some are "lucky" and only have one or two flares It that is a very small percentage

Ds was dx at age 7 and is now 13
He started on pentasa and moved to 6-mp (sister drug to imuran) quickly
It was not enough to keep him in remission since the drug kept raising his liver numbers
But no real side effects
They checked his bloodwork often and once the liver numbers increased the med was stoppped

He now takes humira and methotrexate
He has been on humira for 5 years

And mtx for 4

Most pediatric GI will not use imuran or 6-mp any more for kids due to increased lymphoma risk

They are using methotrexate instead (not as high of a lymphoma risk )

Fwiw Ds was dx with mild Crohns as well

But the meds keep his instestine as healthy as possible for as long as possible to avoid the inflammatory cycle which can lead to surgery

Good luck
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