Results are in. Not good! Advice appreciated.

[SumCiA]

Hi all. I had my first ever colonoscopy last week one year after my hemicolectomy (resection of terminal ileum).

The results are pretty depressing. It looks like i didn't get much of a crohns free innings. After my surgery last year, the surgeon told me he had removed all of the diseased bowel and what was left was clean as a whistle.

My new terminal ileum (the join between the small and large bowel) is now so narrow the scope could not pass through it (AFTER ONE YEAR!!!!!) All my Doctor could do was get the scope as close as possible and shine the light into the small bowel to take a look into it. It showed a section of shallow ulceration within the small bowel. He took some pictures and the test was over. After explaing what he found he told me to come back in a months time after my next set of blood tests.

I had pretty much resigned myself to the fact that the crohns will have returned at some point in the future but was not expecting it back so soon. I have been taking 25mg Azathioprine (very low dose because white cell count was getting too low) every day, which doesn't seem to have done much to delay the crohns relapsing.

I've been out of the loop for a while now. Are there any new meds other than Aza (Imuran) that i should be asking him about? Would it be worth having some other form of exploratory test to look into the small bowel? Has anyone else had a similar relapse so soon after surgery?

Thanks in advance. Take care.

 

[D Bergy]

Sorry about the bad news. I always wonder if things are going on as well inside as the seem to be outside. You never know for sure until the scope or scan.

Since the Imuran is not doing the job, ask him about trying Low Dose Naltrexone.
It is not going to work any worse in any case.

Dan

 

[mommy1st]

Freddo, I completely understand what you're going through. When I was 21 I had my second surgery then at 23 I had my third. When I had my third surgery, my doctor was shocked to see how much damage the Crohns had done in that time. I just had my forth surgery at age 29 and I am still taking Humira and Imuran 200mg I just hope that this will be my forth and final surgery. I had a UGI and small bowel follow through done to see how much of my small intestine was narrowed, it gave them a good idea of what was going on. Good Luck and I hope they find the right meds to turn things around for you.

 

[Colt]

LDN is really only a viable option in mild cases or as a long-term maintainence therapy once the flare has stopped. This gentleman seems to be in serious danger of another surgery.

Freddo, over the past few years an entirely new class of drugs has been developed called biologicals. They are basically immune cells reprogrammed and infused into your body to take out the other immune cells that are responsible for the damage done to your intestines. The most well known are Remicade and Humira and they have revolutionized the treatment of crohn's disease. They are often extremely effective and are the first medications to ever show repair of damage done due to crohn's disease. This is now the standard treatment for severe and/or medication resistant crohn's disease.

Compared with Imuran the only real negative is the extreme cost of these drugs making them extremely difficult to get in countries with private health care. You can develop a resistance to Remicade (the older and cheaper of the two) causing it to stop working suddenly, but Humira does not have that problem and is an option should that happen. Always keep in mind that even if a drug is very effective, it's never perfect. There's no cure for crohn's disease and probably won't be for a very long time.

 

[SumCiA]

Thank you everyone. Alot of info to consider.

My Azathioprine (Imuran) dose had gradually come down from 150mg to 25mg solely due to the effects it was having on my bloods. Straight after my Doc had finished the colonoscopy, he recommended i keep taking the Aza until we meet next month and prompted me to remind him of the dose i was on. Before i could answer, he offered up 150mg, when i said it was 25mg he looked somewhat surprised and then rememebered it was because of the blood test results.

This reaction immediately makes me think that 25mg Aza is of no use to me and having little effect on the Crohns and is probably the reason it has relapsed so quickly.

I will mention to him what you have all recommended and see what he says. If anyone else is/was in my position then it would be great to hear other success/failure stories on meds etc.