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Crohnie since 2006

Hi all. I'm currently an unemployed full-time grad student pursuing a Masters degree in social work. I've had Crohn's Disease since the summer of 2006. I was diagnosed quite acutely. I woke up one Sunday morning thinking I had the flu. I was achey all over and had a fever. No real GI symptoms to speak of though. The fever waxed and waned for a couple days and then I started to have low-grade abdominal pain by Tuesday. By the time I got to an urgent care center that afternoon, my fever had spiked back up to 103 F. That combined with pain in my lower right quadrant earned me a trip to the ER for a CT scan. The doctor at the urgent care center was concerned that I had appendicitis. Oh how I wish that had been it.

The CT scan showed no abnormality with my appendix but I was told there was inflammation in my colon. I had no idea what that could mean. They said they needed to admit me for a colonoscopy the next morning. At 8 pm that night, still with a fever of 102-103 and hooked up to an IV pole, a jug of GoLytely was plunked down in front of me and I was instructed to drink.

After my colonoscopy the next morning, my GI doctor told me that I had Crohn's Disease. He didn't explain what it was. He didn't prepare me in any way. He jut told me not to worry and not to read things on the internet. Well, I did and I did. And I fired him. I was on Prednisone for about a month and a half and started on Pentasa. In the time since, I developed joint pain for a while. The GI I was seeing didn't really know what to do with me because my gut symptoms were under control. He told me I would probably be okay taking some Ibuprofen. Next...

I saw a rheumatologist who was really excited to try Humira with me because it had just been approved for Crohn's. It worked but I worried that it was too intense a treatment for my case. My pain wasn't that bad and my GI symptoms were non-existent. So I opted to go off it and sought the help of a naturopathic doctor. The most helpful advice she gave me was to cut out dairy, which I did. (A few years later blood tests showed that I was sensitive to dairy so it was a good call.) But mostly, I spent a ton of money on a ton of supplements that didn't seem to do much. Back to the Pentasa it was.

I've done okay on the Pentasa since then, with a few minor flares that Entocort got under control, until recently. I'm actually unmedicated right now because I hit the prescription coverage max on my crappy student insurance plan and I can't afford Pentasa out of pocket. I applied for patient assistance through Shire while I still had meds but their process is so slow and it became obvious that the Pentasa wasn't keeping my symptoms under control anyway.

Without prescription coverage, I can't afford Entocort for this flare and I really really really don't want Prednisone (I already have osteopenia due to my first round with the stuff/general calcium leaching from Crohn's). The new GI doc I'm seeing recommended Humira so I'm going to give it a shot again. I applied for their discount program last week so hopefully I'll be medicated again soon.

Right now, the pain fluctuates from mild to moderate. Fatigue is pretty bad many days. I'm struggling to keep up with school work and I'm frustrated with the health care system. I've had to fight so hard for decent treatment and answers since my diagnosis. I'm tired.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum.

I am sorry to hear that the tum is acting up again on you :( One thing I was wondering is whether any of your vitamin levels have been checked? Do you notice whether certain foods make your symptoms worse? I will be keeping fingers crossed that you will soon hear back with regards to the Humira and can be getting the treatment you need.

AB
xx
 
Thanks AB! I'm not sure what was checked on my last bloodwork. I'm having a hell of a time getting information from my doctor's office. I still don't have the results of my CT scan from last week and I've called three times about an abnormality found on my colonoscopy (aphtha? on my terminal ileum) and haven't heard back yet.

Right now, pretty much anything I eat causes some level of discomfort. It feels like I have indigestion all the time.
 

Karen

FRIEND 4 1 & ALL
Welcome Aboard southernish ... I am sure that you will get lots of HELP and MAKE lots of FRIENDS { count me in if you want to send a request that is } well my hubby is the one with the Crohn's and I am here to show my support to others ... so once again WELCOME !!!
 

Angrybird

Moderator
Location
Hertfordshire
It may be worth going on a bland, low residue diet to see if this helps at all. It is also worth getting your levels checked as it is common with crohn's to have deficiencies in this area, your GP can arrange these if you are not easily able to get in touch with your GI, they may be able to also assist in getting your scan results.
 
Thanks Karen and AB!

I finally got a call back from my GI today. She still hasn't even looked at my CT scan but assured me she will call tomorrow. I have a follow-up appointment with her in 3 weeks and I'm going to ask about more bloodwork then. Getting anything done in the health care system I'm stuck in is an ordeal.
 
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