Crohn's Disease Forum » Support Forum » Feeling Defeated

06-24-2016, 01:52 PM   #1
Join Date: Sep 2015
Location: Michigan
Feeling Defeated

I am just feeling like I need to vent. I have been feeling like my Crohn's has been doing really well lately. I had an MRI on 5/2 that just showed no active disease. Just a small 10cm segment of my terminal ileum where they could tell I had active Crohn's before. My bowel movements are almost back to normal and I was feeling really good. I also got my abdominal pain I've had for almost a year figured out. Turns out I have an umbilical hernia and am getting surgery next month to repair it. I've never had surgery before (never even been under general anesthesia!) but I am glad I am not needed surgery related to my crohn's.

However, my stupid CRP keeps staying raised and is elevating again. So, my GI ordered another colonoscopy that I will be getting on 8/12. I'm glad he is being extra cautious to make sure there isn't any simmering/microscopic inflammation, but I am still upset. I thought I was doing great and all my symptoms had resolved. Has anyone ever had a clear MRI but still had a positive biopsy? I am glad I don't have bad symptoms again, but it is almost scarier to think that damage could be happening and I don't even know about it.

I'm also nervous because I am getting my colonoscopy under anesthesia rather than just twilight sedation. I think I did ok with my colonoscopy last year, but I woke up in the middle of my upper endoscopy in the winter and freaked out and tried to pull out the camera, so I understand getting anesthesia so my anxiety doesn't get the best of me, but I am still thinking about all the worst case scenarios.

I also hate that it always seems like the nurse contacts me and gives me this type of news on a Friday afternoon!

Anyway, thanks for listening to my rant.
06-24-2016, 02:50 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Hi. On the one hand, you know your body better than anyone else. On the other hand there could be damage going on inside of your body that you aren't aware of. I am glad that you have a doctor that cares about you. I use to be on twilight sedation for colonoscopy but I asked to go all the way under because it was uncomfortable for me so I would think they could do the reverse for you. I hope the best for you. Let us know how you are.
06-24-2016, 03:40 PM   #3
Senior Member
My daughter was an RN before going back to school and she said it's not uncommon for people to wake up and grab tubes etc. They just give people drugs to make them forget.
She told me a few terrible stories..but the patients didn't even remember, so it wasn't traumatic for them. I wonder why you remember..

I hope it all goes well for you. Good luck!
07-02-2016, 12:02 AM   #4
Join Date: Jun 2013
It's hard when you feel like you are doing well but tests say otherwise. Add that to procedures that are nerve racking and a possible first surgery and venting seems pretty warranted.
At the same time , hopefully this forum helps with perspective. You have every reason to have a good rant and I hope this helps. You aren't alone and I've been where you are. Stay strong and feel better

07-04-2016, 11:54 AM   #5
Senior Member
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

My Support Groups:
The good things is you are feeling well and the MRI scan was clear. I was unfortunate enough to have a CT scan which showed absolutely nothing - "entirely healthy" were the words used. However, a colonoscopy a month later showed lots of ulcers at the terminal ileum and very active disease. However, I have had symptoms to match this and not feeling good at all. Your GI has done the right thing in referring you and if there is active disease hopefully it will be very mild and easy to get under control.

2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet

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