Flare or not?

[spiceman]

First of all I would like to say a big Hi to everybody on this site. Ive been reading the posts for some weeks now and decided it was about time to have some input.

I'm aged 36 and been diagnosed with Crohns since I was 18. The Medication that I started on was Pentasa, 3 tablets per day(500mg) each, which I took for many years without really much success. I say that because I still suffered with many trips to the toilet and severe cramping in my stomach which normally lasted for about 5 hours until finally passed on its own accord.

Then about 5 years ago my symptoms got worse and I was put on Azathioprine 100mg plus the pentasa. The severe cramping was getting more frequent say maybe 3 times per year. Each time the cramping started I knew I was in for some real pain but eventually it would pass with me being sick a few times.

Looking back now Ive been such a fool because I know there's been many times when Ive been far to relaxed about my condition and not taken my tablets regularly as I was told by my GI.

This is where I am to date - In pain and suffering!! My current bout started at the end of March with once again awful cramping and being sick. I felt fine until that particular evening. That night things felt so bad I went to hospital which they confirmed I had a partial blockage in my small intestine. I was on steroid drip and nothing to eat for 4 days coupled with shots of morphine and released after 8 days.

This was the wake up call I needed to start taking my medication correctly. I left the hospital with relief that I didn't need a operation but was upset that I needed to take the prednisolone tablets again! (taken those pills about 3 sessions in the past) Which after tapering down I felt fixed.

But this time something is going on different and I'm now worried sick. Ive now been on prednisolone and 150mg of Azathioprine since march. The problem I have this time is every time I taper of steroids I get a very tense/bloated feeling in my gut which feels like my insides are pushing out wards making me very uncomfortable. I've tried to taper of the steroids about 4 times now and each time without success and had to go back up to 60mg dropping 5mg each week. The pain just keeps coming back! Stools are fairly soft at the moment with me going about 4 times per day but manageable.

Today I had to see my general Doctor because once again stomach hurts at about 15mg pred. What has confused me is that last week I had a blood test done and he said my results looked normal and No signs of Flaring. I goto see my GI next week for another check up which I will have to explain these symptoms.

Please could anyone confirm if this is normal with Crohns or not? My question is if my blood shows fine why am I in this pain.? Does anybody else have this pushing out-swollen-bloated feeling after severe cramping. Like I said this blockage happened in March.

Thanks for reading this long post and from now on i will be taking my medication as prescribed for the years to come. Thank you everybody with all the useful information on this site - it really helps.

Thank you.

 

[Sojourn]

What you're describing sounds very common. I'm not really sure about the blood tests because my GI usually would not tell me about that, he'd just prescribe the medicine. A CT scan might be called for if the pain gets really bad.

I never really could distinguish between being in a flare and not. I had a couple of good years, but when it started getting bad it just seemed to progressively get worse. It was like a continuous flare that just got worse.

But that's not the case with everyone. Hope you get better soon.

 

[katiesue1506]

Your taper schedule could be way too fast. This is how I tapered from 60mg:

60--> 40--> 30--> 25--> 20--> 17.5--> 15--> 12.5-->
10--> 7.5--> 5--> 4--> 3--> 2.5--> 2--> 1.5--> 1 --> .5

I was on each dose for about 3-4 weeks each, except for the higher numbers I was on for 2 months at a time. All I know is when I was finally done tapering it had taken over 8 months and I didn't have any problems coming off of them.

My GI firmly believes that you must go very slow when tapering to allow your system to kick back in and start making its own cortisol. It was trying at times to realize that I wouldn't come off of my medicine for many months, but looking back on it, I'm very glad we went as slowly as we did, since I didn't have any troubles.

 

[B.B.J.]

Every blood test I have had since I was diagnosed has reported back that I am pretty normal on all levels even when i was in hospital with IV pred and loosing sooo much blood. Never been anaemic which confused me i must say to feel so awful and not have it reflected in my blood results. The docs just said there were signs of inflammation but nothing major to report. (???)
I do have bloating all the time especially on the left side where the bowel is with cramping and niggly pains. Still taking pred 40mg along with mercaptopurine
100mg daily which is taking its time to kick in. I put the blood results down to the fact that the body has its own resources to battle what its lacking in order to remain semi-stable. Im learning its all about patience when you have this disese :yrolleyes:

 

[mikeyarmo]

Welcom spiceman! I am so happy you decided to join and have found the forum useful!

I am very familiar with the "pushing out-swollen-bloated feeling after severe cramping" feeling. It was such a common occurence for me for a few months at one point that to this day I still sometimes clutch my stomach thinking I am about to feel the bloating, even though this is something I pretty much have not experienced since my surgery three years ago. I am glad you are more concerned over taking your medication properly from now on and hope you realize that what you are going through is perfectly normal.

 

[spiceman]

Thank you everybody for your replies. I feel that I've learnt more over this last month about my condition than I have ever done over the years... all down to people like yourselves posting back - Thanks.

I think the next step my GI will be taking is to increase my Aza up to 200 Mg per day and 6 pentasa. It very much sounds like I'm not alone with the "pushing out-swollen-bloated feeling, it sucks as you would all probably agree.

Sometimes I feel maybe I should just go and have the stricture removed and be done with it but what also worries me is that i hear that it can reacure next to place which was removed leading to more operations and then maybe not leaving so much of a GI tract in the body.

At the moment I'm self medicating with my prednisolone because I'm sure its not right what my doctor said by dropping from 20mg to 10mg within 1 week when I'm in this uncomfortable pain - I prefer the idea as Katiesue says of tapering very slowly.

Also today i went out and purchased the probiotic drink Actimel which i will consume 2 bottles per day and see if that helps at all.

With regards to an operation to remove the stricture what size of scar would I be left with and would this mean I may require a bag for sometime or permanent? I know all cases of Crohns are different but wondered how you guys and girls got on with this procedure?

There is still so much I need to learn about diet and to see if this has any affect at all because at the moment I can't pin point what disagrees with me - Its so difficult because the swollen feeling seems constant what ever I eat. My GI doctor as told me that diet plays no part in this Illness but reading your post it obviously does.

Thank you all.