Hello Everyone

Hey All,

I'm Jessica and I reside in North West Jersey and just came from my G.I.'s office.

I was diagnosed after emergency exploratory surgery with Crohn's almost 20 years ago. Came very close to dying and the Nurses didn't expect me to live. Ha, I fooled them :thumright:

First surgery removed the appendix and removed a third "bump" on the cecum. After three weeks of bowl rest on TPN and my organs starting to fail they operated again and removed the new, two "bump" cecum and part of the terminal ileum.

Was in remission for a long time, almost 9 years before everything flared up again. Since then it's been on and off with the flare ups with the last two years pretty much being all flare but no obstructions.

Currently on Pentasa, MP-6 and Sulfasalazine with frequent cramping and things are loose back there.

Hoping to find and connect with other Crohn's suffers and interested in new meds that are out there or soon to be approved by the FDA. As a side note I am a Nurse but my specialties are not GI related.

Hi, welcome to the forum!

That sounds rough. Very glad the nurses were wrong!

Have the medications helped any? Have your medications changed any since you were in remission?

Hopefully things will get better for you soon!

SarahBear said:

Have the medications helped any? Have your medications changed any since you were in remission?

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Hey SarahBear, I am soooo.. glad the Nurses were wrong too

My meds were pretty much Pentasa and Sulfasalazine once I was out of the Hospital. At one point ( I was in remission for 9 years after ) I didn't take any of the drugs for about three years. Then around 10 years ago I got my first of many flare ups with the latest one that has been going on for two years now.

During flare ups the Dr. added Prednisone or Entocort along with the occasional and the infamously less than fun, Barium Swallow MRI.

Currently he added 6-MP about half a year ago because things are getting worse but I haven't seen any difference yet. He did up my dose of 6-MP today so hopefully that will help.

Also I've been looking into the Medical Marijuana laws here in NJ but the GI doesn't participate and our Governor (Chris, can I get another cheeseburger, Christie) seems to be doing everything to prevent the program from getting started. It was approved and went into effect almost three years ago ( law signed by the previous Governor ) but it still hasn't really gone into effect and it may well be another year or two before it starts to dispense the drug to patients. I have read that it works pretty well for some CD sufferers.

Hi Jessica and welcome. I'm sorry you're in a long flare, that must be rough

What dose did your doctor up the 6-MP to? Did they do any testing such a TPMT before you started or metabolites since you started in an effort to optimize your dosage?

That's too bad you can't get medical marijuana as I do believe it can help many. Has anyone ever talked to you about enteral nutrition? Low Dose Naltrexone is also an exciting treatment in my opinion. Both are listed under our Treatment section if you want to learn more.

All my best to you.

David said:

Hi Jessica and welcome. I'm sorry you're in a long flare, that must be rough

What dose did your doctor up the 6-MP to? Did they do any testing such a TPMT before you started or metabolites since you started in an effort to optimize your dosage?

That's too bad you can't get medical marijuana as I do believe it can help many. Has anyone ever talked to you about enteral nutrition? Low Dose Naltrexone is also an exciting treatment in my opinion. Both are listed under our Treatment section if you want to learn more.

All my best to you.

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Hey David, Thanks!, and thank you for doing this website :ybiggrin:

Yes, I did do the TPMT testing and get the blood checked every month or two. So far things are fine with the blood work.

6-MP dose was 50 mg but it's been upped to 75 mg. I have to do 62.5 mg for a month before I get to the 75 mg dose. Then I go to my next vampire appointment.

Also taking Pentassa, 4 gm total daily and 1.5 gm of Sulfasalazine total daily. I also take meds for allergies, depression, insomnia. I used to joke with my patients in the nursing home that I was on more meds than they were when they complained about the number of pills they were on.

I haven't tried enteral nutrition because I love eating so much.

I did talk to the GI about Naltrexone a few years ago but he wasn't keen on it. He said that most of the people he has tried on it didn't respond. I also like to drink on occasion. I stay away from fermented alcohol's and usually just mix vodka with some crystal light type drink mix. When I do drink I only have one or two. Getting drunk is a thing of the past and I don't miss the hangovers.

I do love my GI guy and he is pretty much up on things and whats new. The latest colonoscopy showed more sores on the terminal ileum than a few years ago so that's when he added 6-MP to the mix. He also mentioned that he is paying close attention to the data on fecal transplants. That scares me as the thought of it is so revolting. Will be interested to see if there are any discussions about here on your forum.

Why does he have you on both Pentasa and Sulfasalazine? Do you have joint problems?

Has your doc ever tested your thiopurine metabolite levels to see if your 6-MP is in therapeutic range? The results would mention 6-TGN and 6-MMP levels.

Here's a good thread on fecal transplants

David said:

Why does he have you on both Pentasa and Sulfasalazine? Do you have joint problems?

Has your doc ever tested your thiopurine metabolite levels to see if your 6-MP is in therapeutic range? The results would mention 6-TGN and 6-MMP levels.

Here's a good thread on fecal transplants

Click to expand...

No big joint problems. I believe that Sulfasalazine contains 5-ASA like Pentasa does and the Sulfur has an anti-biotic and anti-inflammatory action. I was taking the coated pills until he found out that when I had stomach/intestinal pain I would cut the pills open to get a quicker response so now I take the uncoated version.

I do believe that my next blood work will include thiopurine metabolite levels. The nurse mentioned that I have to fast (never did that with GI guy before) before the test. When I asked why she said that I was going to be doing a full metabolite panel this time around. I guess that will include the 6-MP levels.

Thanks for the fecal transplant thread. I'll be clicking on that with great trepidation:ytongue:.