Imuran- Not feeling well and desperate for advice or insight

[scumtastic]

A little back story. I started out on Imuran back in August of 2014. I was in a middle of a flare and so it took a about 3 months for the imuran to kick in and for me to taper off the prednisone. The dosage of the imuran was 75mg. When I tapered off the prednisone, the imuran improved symptoms but I still felt lousy and so they upped the dosage to 150mg. After the increase I had one good month with no symptoms at all, I felt great because for once I had no pain or diarrhea. I even had blood tests and cat scans and all showed normal with no inflammation that they could tell.

Well, after that one good month, for what ever reason, the disease decided to rear its ugly head. The pain and diarrhea was back and lasted for about 2 weeks till I called the doctor. He immediately sent me to do more tests, blood and ct scan(barium). The tests came back normal. He ordered me to stay on the imuran as the test shows no abnormal findings. I was happy that the blood and ct scans were normal, but I don't feel the same. . My stools are no longer consistent (I'm having loose stools) and I started having pain again. It seems like I'll have 2 good days and then 5 lousy days where the urgency still there coupled with pain (no blood), and no appetite. I then scheduled a GI appointment and explained my symptoms and for the 3rd time he sent me to do blood and ct scan (with barium). The following week was the follow up with the GI and he explained that the results showed normal. I ended up getting frustrated and breaking down at the doctors office because I feel like they're looking at me like I'm crazy because the tests "show normal levels" but I'm still suffering .

I'm at a loss and really don't know what to do. I feel so crappy!!! I was wondering if any of you had any similar experiences with taking Imuran but still having some symptoms even though all test showed normal levels and no inflammation?


Any insight or advice on what to do, please let me know. I would greatly appreciated. I'm feeling so sad right now because I feel the suffering will never end.

 

[worriedboy]

Hi There,

You have reached the right place; I am pretty sure some with similar experiences will reply.
In the meanwhile - did you doctor ordered a colonoscopy ?
Basically inflammation could also be active at the microscopic level, and that can be seen only by a biopsy (taken during the colonoscopy); obviously this will stwy under the radar of radiology scans.

Another thing -
How is your diet ?
Have you had you vitamins and mineals checked ? b12, iron, vitd, folic acid, calcium ...

I join those who believe that sometimes Crohns still needs a little "kick" to enter deep remission. Fro you tests it looks as if medication keep it under control. Maybe it's worth a shot to try a diet/sport/supplements regime if you haven't done so yet.

Hope you feel better soon.

 

[scumtastic]

Hello Worriedboy,

Sorry for the late reply. Looks like you're the only one who responded to the post, so I greatly appreciate that.

My doctor is hesitant to give me another colonoscopy because I had 2 last year. He said that if he is going to give another colonoscopy, it would be when we move on to the next drug, which is Humira. He said the choice is mine. I'm really not sure if I should just move on to Humira or not. Im really confused right now because I'm not really having diarrhea right now. Its just thin stool and I'm only going to the bathroom 2-3 times a day, apart from the occasionally really bad days where where I go 4-6 times. Also, the pain in the abdominal is still there throughout the day with constant gurgling. I just don't feel right.


My diet is pretty plain and dry. I mainly eat rice and meats. As far as vitamins, I take b12, fish oil, general vitamin pill and vitamin D. As you mentioned, its seems that the imuran has improved symptoms but still have some that are there. My GI recommended me to go on prednisone for one month, which I DREAD and really don't want to because of the serious side effects i get, to see if that helps.

You mentioned that there could be microscopic level of inflammation, could that still damage the insides and lead to surgery in the long term if untreated?

I'm lost and don't really know where to go at this point.

 

[liscol]

I did go through something similar while on methatexate. It turned out the symptoms I had were side effects from the medication. Not saying this is what is happening in your case but maybe something to consider and you may want to talk to your GI about this, you may do better droping to a lower dose.

 

[worriedboy]

Hi again,

To my understanding microscopic inflammation, while can cause horrible feeling, does not leave permanent damage in the form of strictures, fistulas etc.
However I sont know as for the increased risk to bowel cancer and thus regular colonoscopies still need to be done.

What side effects do pred. give you ?

In your case I'd really try to throw the kitchen sink ...
Try acupanture. yoga, tai-chi, changes in diet (some people have great success with scd for example), check your vitamin levels (you wrote that you are supplementing but you have to make sure they are absorbed), some sports (many feel very well with walks, swimming), stress management (take some time off to do things that give you joy).

I am encouraging you towards this since it sounds that time is by your side, your doctor is pleased with the test results, the what's the rush ?
I understand your frustration from this ongoing condition, wanting some real relief and steady health for a while.

But please try to be patient.
Treat yourself the best you can.
The n you will see if extra medication is really needed for you or not.


The forum is a great place to find information about things that help Crohnies.
From juicing and diet forums to self massage instrcuctions. Spend some time to look into what you think will suit you.


I really hope you feel better soon. Keep us posted.