• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Not sure what to say...

My name is Jen. I was diagnosed with CD late (so I am told) - I was 34. I feel as though I have had bowel issues (mostly constipation and irregularity) all my life, so it is truly possible that I just went undiagnosed. My dx came about when I was having upper abdominal pain and some pain under my sternum every time I ate. I went through a lot of testing to get my dx (ultrasound, CT scan, PET scan, x-rays, blood work) but I have confirmed CD. My gastro used to say that I looked worse on the inside than I felt on the outside, but that is no longer the case.

I tried a number of different things: 6mp, Pentasa, steroids, etc. It is all kind of fuzzy what i took back then. Then I had one hospitalization in 2006 from a partial obstruction and I know that is when I started on Remicade. That worked really well for me for a long time. I was getting 10mg/kg every 8 weeks, but in the summer of 2010, I was having persistent pain in my RLQ and a LOT of fatigue. I was increased to every 6 weeks. In December of that year, I had a colonoscopy to find that I would need surgery. I had 4 inches of my ileum removed and also my cecum - this was in January of 2011. I have been having a flare up since last summer, which seems to be getting better after prednisone, a return to Remicade, and Imuran. I am exhausted most of the time and it's a bit old. I also struggle with Diabetes and I am finding it difficult to follow diets which will accomodate both. Sometimes I just get the "whatever"s and do what I want. :(

I misbehave a lot, which I won't get in to here and I find that I am holding on to a lot of foods and habits out of defiance or self-pity or whatever. I pay the price in one way or another, but I can't help feeling like a brat. :ybatty: I came upon this forum by chance when I was researching something (I can't even recall what, now) and I am grateful - I have been doing some reading in the forum and it is nice just to know that there are folks out there like me. Thanks for listening...
 
Last edited:

David

Co-Founder
Location
Naples, Florida
Hiya Jen and welcome! Thank you so much for sharing your story. I'm sorry to hear you're currently in a flare, you poor thing :(

By chance are you on Metformin to treat your diabetes?

In addition, are they monitoring your vitamin B12 levels? I ask because people with Crohn's Disease, especially those with resections like your are commonly deficient and that can lead to that exhaustion you feel. If you have been tested for B12, when was it and what was the specific level?

Again, welcome!
 

afidz

Super Moderator
Hi Jen!
Thankyou for sharing your story, having Crohn's isolates you from everyone you know, and its kinda nice to know that there are other people out there with the same struggles. I have never been on Remicade, however I have been on Humira, and it put me in remission, the only sucky part is you have to inject it your self, and its more often than remicade.
As far as the diet goes, in my opinion there is not one solid diet that works for everyone. everyones case is different and everyones stomach can handle different things, and having diabetes Im sure only makes it harder. But typically I stay away from most veggies and some fruit, anything super fatty or greasy and ALL nuts and seeds.
I agree with what David said about Vitamin B12, Im supposed to be taking it but Im really bad about taking my vitamins but my dr. says its very important.
Good luck with everything!
 

Angrybird

Moderator
Location
Hertfordshire
Hello Jen and welcome the forum, glad you have decided to join. Sorry to hear that you are not feeling tip top at the moment, definetly get your B12 checked as this can have such an effect on how you feel both mentally and physically when your levels are low.

AB
xx
 
Hiya Jen and welcome! Thank you so much for sharing your story. I'm sorry to hear you're currently in a flare, you poor thing :(

By chance are you on Metformin to treat your diabetes?

In addition, are they monitoring your vitamin B12 levels? I ask because people with Crohn's Disease, especially those with resections like your are commonly deficient and that can lead to that exhaustion you feel. If you have been tested for B12, when was it and what was the specific level?

Again, welcome!
Hi David, I was reading back through this and saw your question about Metformin. Yes, I currently take 2000mg/day and 10mg of Glipizide. I am curious why you asked. I know it's been a while...
 

David

Co-Founder
Location
Naples, Florida
Because I am concerned about your B12 level as people with Crohn's are commonly deficient in it and you have symptoms of deficiency. AND because Metformin ALSO interferes with B12. So the chances you're deficient are extremely high if you aren't supplementing. Have you had your B12 level tested? If so, when, and what was it?
 
Top