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My story, so far

Hi everyone,

I was diagnosed with Crohns in the fall of 2007, about 6 months after getting married. It was an interesting diagnosis since it was my family doctor that suspected I had Crohn's with out doing any of the normal tests. I was referred to a GI, who verified I had Crohn's and put me on a very high amount of asacol, along with pretty much anything and everything he could throw at me including prednisone and remicade. I was only with this GI for about a month before he requested I transferred to another GI who could help me better since I showed no signs of improvement. The next two weeks I met two different GI's, both working together, and a surgeon. I had surgery a week later, just after my 1 year wedding anniversary. They removed 6 inches (15cm) of the terminal ilium, yippie! My GI at the time held off way too long to start me back on remicade, so when I finally got back on it and ended up reacting and becoming sick after every treatment.

All in all I have a unbelievably supportive wife who is overly defensive of me especially when I feel to weak to defend myself. I terrific 3 year old, who must always make her presence known. My side of the family, which feels like after something happens is the best time to talk about things (I didn't find out until after I was diagnosed with Crohn's that my Grandfather had Ulcerative Colitis, even though I had digestive problems for years before. On that note it was I who kept pushing my mother to see a GI for her digestive problems and she found out she had diverticulitis). I also have a boss who believes he is supportive, but causes me more stress and trouble and who tries to relate my problems with his problems even though they are not even remotely the same.

Anyway, I am glad to have found this forum and after reading some of your stories and seeing all of the support everyone has for each other makes me feel good about having Crohn's.
 
Hi Zeing:

Welcome to the forum! I'm so glad you've got someone as supportive as your wife. I'm always amazed and in awe of the people who support us through our illness. It's too bad that things aren't as positive in your work life---as amazed as I am with people who support us, I'm equally amazed and appalled by people who think Crohn's is just a "tummy ache" or some other remote experience they've had.

I hope your workplace doesn't get so stressful that it impacts your health---there is tons of evidence that shows the links between stress and declining health.

Are you on any meds right now? Were you offered other biologics after your reaction to Remicade?

I'm glad you're here---looking forward to seeing you around the forum!

Kismet
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :bigwave: I am pleased you have a supportive wife, my hubby is really wonderful too and it can make such a difference when things are not going so well. How are you feeling at the moment? What meds are you currently on?

AB
xx
 

David

Co-Founder
Location
Naples, Florida
Hi Zeing and welcome :) I'm so glad you found your way here. You're amongst friends! Friends who understand.

Have you had your vitamin b12 levels tested? I ask because the terminal ileum is the area where it is absorbed. If you had some of it resected, there's a pretty good chance that you're deficient which is bad news. If you haven't been tested, I implore you to do so. If you HAVE been tested, what was your specific level?

Again, welcome!
 
It is so nice to have a supportive spouse and also great to have found this forum. I haven't been on a lot lately, sorry for the late replies. Pretty much the past week, my health took a decline and I've put myself on a semi liquid diet. I'm sure getting ready for the holiday had something to do with it, plus I've been spending time painting a room in the house. Other than that, work stress has been making me crash pretty much as soon as I get home.

Thank you all for the replies. I'm hoping to become a little more active on the forum as soon as life settles down a bit.


Hi Zeing:

Welcome to the forum! I'm so glad you've got someone as supportive as your wife. I'm always amazed and in awe of the people who support us through our illness. It's too bad that things aren't as positive in your work life---as amazed as I am with people who support us, I'm equally amazed and appalled by people who think Crohn's is just a "tummy ache" or some other remote experience they've had.

I hope your workplace doesn't get so stressful that it impacts your health---there is tons of evidence that shows the links between stress and declining health.

Are you on any meds right now? Were you offered other biologics after your reaction to Remicade?

I'm glad you're here---looking forward to seeing you around the forum!

Kismet
I'm currently only on Humira. After posting I created a signature with meds and such. I think, like a lot of Crohnies, doctors just tossed drugs at me to find out what would stick. I have an appointment on the 30th, so might end up on more drugs.

Yeah, work is very stressful. I'm still looking into ways to reduce the stress. Thank you very much for the reply!



Hello and welcome to the forum :bigwave: I am pleased you have a supportive wife, my hubby is really wonderful too and it can make such a difference when things are not going so well. How are you feeling at the moment? What meds are you currently on?

AB
xx
I'm starting to feel a little worse. I have an appointment set for the 30th. Currently, I'm on Humira. Thanks for the reply!

Hi Zeing and welcome :) I'm so glad you found your way here. You're amongst friends! Friends who understand.

Have you had your vitamin b12 levels tested? I ask because the terminal ileum is the area where it is absorbed. If you had some of it resected, there's a pretty good chance that you're deficient which is bad news. If you haven't been tested, I implore you to do so. If you HAVE been tested, what was your specific level?

Again, welcome!
Unless it is done in blood work (I honestly have no clue), I don't believe it has ever been tested. I'll check with my doctor and get tested if I haven't. Thanks for the advice and the reply!
 

David

Co-Founder
Location
Naples, Florida
While it is checked via blood work, it is not a part of routine blood work and has to be specifically requested. If your doctor did do it, find out when and the specific level. If it hasn't been done, get it done and get the specific level. You may want to get vitamin D done as well for good measure as so many are deficient in that as well.

I hope you feel better soon!
 
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