My experience so far.

[obascin]

It all started for me a few years ago, when I noticed that I went to the bathroom more frequently than what was healthy. I had so many "near misses" stopping while on the road or running from meetings. I had just booked a ski trip last year and was so excited, but when the time came, I spent most of my time with a fever and miserable. I had already scheduled a GI visit, but had to make it an emergency colonoscopy after some severe bleeding that occurred that first day back from the ski trip.

February 14th, 2014. That was the official date of the diagnosis. Crohn's disease. What a romantic way to spend my day. To top it all off, I had just started seeing a girl that would eventually be my whole support system. At first I thought this was just something I could take a pill for every day and that was that. How wrong I was.

I learned in 2013 after some extreme poison ivy that I have some pretty bad reactions to prednisone. When I tapered off, I got some pretty bad panic attacks. Bad enough to not pile that on top of Crohn's disease.

So, we decided budesonide (the GI and myself), but considering the insane cost ($800/month), I just couldn't do it longer than a month. After my first REAL flare up in April 2014, we decided to pursue Humira. Initially it was a dream, no side effects and I got myself up to about 80% healthy. But, that didn't hold out long.

Around this time I also got two CAT scans. They found 20 cm. of inflammation in the small bowel right at the ileocecal valve. The second CAT scan also showed the inflammation got worse (about 4 months between the scans).

I had a bad flare in December of 2014 and I was told to double the Humira (weekly). I was also slated to start 6MP on top of that, despite the controversy and increased cancer risks. I opted out of the 6MP initially because the doubled dose of Humira seemed to give me severe head aches, and I was getting bad fevers. But after ruling out infection and deciding the fevers were the Crohn's, I just started 6MP tonight.

I have been reading the forums for a while and I figured I should join to offer whatever help I can. We are all in this together.

 

[24601]

I hope you're tolerating the 6mp okay! Keep us posted! And I hope you're on your way to better health very soon!

 

[araceli]

Welcome to the forum. I hope 6mp does the trick and you feel better soon.

 

[Nroley]

I hope you get some relief.

 

[obascin]

An update: I ended up with a bowel resection after a few months on the 6MP. Things got really bad, and they ended up taking 2 feet of small bowel, appendix, ileocecal valve, and some large intestine needed repaired. It was a terrible mess, and I'm about 3 weeks post surgery. My girlfriend left me, and this recovery has been slow. I don't know what I did to deserve all of that, but it knocked the wind out of me.

Despite all that went wrong, I am feeling much better physically and mentally. Emotionally, dealing with heartbreak while recovering has been almost harder than healing. I guess that's life.

I'll post a full story on the surgery for people to read.

Thanks,
Nic

 

[24601]

Sorry to hear that things took a turn for the worse but glad to hear that you are now feeling better physically and emotionally! Hopefully that will only improve as your body has more time to heal after surgery.

 

[UnXmas]

I'm sorry for what you've been through. Hopefully a physical improvement will allow you to get back to a normal life agaon. Don't rush it though, you need a rest after going through all that. Sometimes physical recovery from surgery can take a while, I'd only worry if you feel like you're getting worse or develop new symptoms. I'd like to read your surgery story if you post it.

 

[David]

Thank for the update, even though it was surgery. With that region of your terminal ileum removed, one thing you're going to be at greater risk for is vitamin B12 deficiency. Have the doctors talked to you about that or tested your level?

 

[Pacerdhs]

What symptoms prior to surgery? Best wishes.

 

[obascin]

Yeah I was low on iron, Vitamin D and B12, but I have been taking a 6000% dissolvable tablet for all three of the above and my levels returned to normal in about 4 months after the surgery. I still have to take all those supplements but at least I am absorbing more!

My symptoms before the surgery were basically the most severe Crohn's symptoms you can have: constant fever (persisted for months, I'd go 4-8 hours at "normal" and then fall into a low 99-100 degree fever for the remainder of the day. I could normally "sleep it off" but it just came right back. Plus the fatigue was so bad I could barely go into work, it took everything out of me just to walk into the building from the parking lot. Finally, the very severe swelling of the abdomen, and constant pain (felt like a constant throb with very sharp pains sporadically and every few days I'd have a bout of cramps that would have me doubled over or on the floor in the fetal position. The weeks before the surgery I actually had such severe constriction that I couldn't even tolerate soup once and went to the hospital because my whole stomach and esophagus cramped up. I stayed on fluids the whole time before the surgery.