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07-16-2012, 08:41 PM   #1
poppanewt
New Member
 
Join Date: Jul 2012
Location: Saint Joseph, Michigan
New Joiner

Hi all. I'm new to the forum, so will take a moment to introduce myself.

I was diagnosed with Crohn's at age 52 after experiencing very bad abdominal pain and fairly serious weight loss. I had travelled to Mexico on business (I customize and implement software for a living) and while I was there I got bad diarrhea along with nausea every time I ate. I had experienced the nausea, although on a lesser scale for a year or more prior to going to Mexico, but had dismissed it, not following up with a doc about it.

As I was in Mexico, I, along with the first doctors I went to, thought it was a GI bug I had picked up via food and tried to treat it with various kinds of antibiotics, Cipro among them. I would seem to get a little better, then relapse at the end of the course. During this time, I ate less and less, due to the nausea, and lost around 40 pounds (on top or 25-30 I had lost dieting prior to the trip to Mexico). I would also have waves of abdominal pain and took various pain relievers for that.

Finally, my wife got concerned and made arrangements to go to Mayo Clinic for an evaluation. She didn't know what was wrong, but was very worried, as I was vanishing before her eyes. After an initial interview, I was admitted and had a team of doctors trying to diagnose the problem. After about a week, they decided to do a CAT Scan and discovered that I had a large abscess in my abdomen as a result of my large bowel perforating from the flare up.

They immediately put a drain in the abscess and put me on IV antiboitics, along with a liquid diet. This relieved the pain, but the Crohns was in full force by then, and I developed fistulas to my bladder and skin. I had chronic bladder infections, along with stool passing in my urine and through an opening close to my navel.

I started Remicade infusions, however they did not resolve the fistulas, so after a few months I underwent a bowel resection. They removed part of both my small and large bowel, as well as repaired the fistulas.

Unfortunately, there was another abscess that had formed on my bladder and had engulfed my left ureter. When they removed it, they nicked the ureter and had to repair that. The repair wasn't successful and I underwent a second abdominal surgery to again repair the ureter in order to prevent damage to the left kidney.

After the surgeries, I started taking Imuran (actually I use the generic - Azathioprine). It is a low dosage which supresses my immune system just enough to keep the Crohn's in remission, for the most part. I still have occasional flares, but not frequently.

Those ocassional flares is why I discovered this group. I was looking into alternative treatments for the nausea and pain which led me here. Am looking forward to searching others posts for possiblilities.

Mike
07-16-2012, 08:57 PM   #2
ohboyscott
New Member
 
Join Date: Jul 2012
Location: San Diego, California
Welcome to the forums ! Hope you can find what you are looking for here. I'm new myself. Cheers
07-16-2012, 09:40 PM   #3
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi Mike and welcome to the community! I'm glad you found your way here and joined. Would you be interested in answering some questions? It might help us point you in some directions:

1. What dose of azathioprine are you on and how long exactly have you been on it?
2. What are the specific symptoms of the flares you're having?
3. I assume they removed parts of your terminal ileum, ileocecal valve, and cecum. If I am correct, has anyone mentioned vitamin b12 supplementation to you or have you been tested for deficiency?
4. Where specifically is the pain that you're experiencing?

Again, welcome to the community.
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07-17-2012, 02:30 AM   #4
SherryLynn
Senior Member
 
Join Date: Jun 2012
Location: Florida
Welcome Mike,

Im about your age (50) and recently diagnosed. Currently on Aza and Pred. However tommorrow may be starting my pred taper.
07-22-2012, 09:35 PM   #5
poppanewt
New Member
 
Join Date: Jul 2012
Location: Saint Joseph, Michigan
Sorry for the slow reply, the last few days have been kind of crazy for me.

In reply to the questions David asked,

1. 50mg daily, I have been taking Aza for 6 years or so, started it shortly after the resection.

2. Flares usually start with a quesiness and abnormal sensation of movement in my gut. It then progresses into diarrhea and more intense abdominal pain. It's hard to describe the pain, but it comes in waves. At peak, I can't talk through a spike. Slight degree of nausea usually accompanies this making me not really want to eat.

3. To my knowledge terminal ilieum was not removed however would have to get out my surgical reports to be positive. I do not take B12 supplements and get B12 blood work done annually to monitor my ability to absorb B12. I do get monthly blood draws for a CBC, LFT quarterly, and as mentioned, B12 annually.

4. The pain is low in my abdomin whenever the disease rears it's ugly head. Intense enough that I don't really want to get out of bed. Fortunately, I don't get this often, 2-3 times a year on average. But when it happens, I'm not a happy camper.

The normal response my doctor uses is a course of steroids. These are effective after a few days, but I'm not enthused about long term steroid use. Plus, while I wait for them to calm things down, I don't have any good way to address the abdominal pain. For that reason, I started reseaching alternatives. I happen to live in a state with a medical marajuana program, so am looking into that as a possible alternative. That is how I found this site, I have been perusing that forum as well.
07-23-2012, 02:36 PM   #6
David
Co-Founder
 
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Join Date: Feb 2006
Location: Naples, Florida
Hi Mike

In addition to medical marijuana, you may want to look into low dose naltrexone. I know some here have done very well with it.

In addition, you may want to research in our enteral nutrition forum. Taking some enteral/elemental nutrition when you feel a flare coming on may help and allow you to avoid the steroids.

Do you know what your B12 level was last time you were tested? And have you ever had your vitamin D levels tested?
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