Crohn's Disease Forum » Your Story » Where to begin?


04-26-2010, 09:57 PM   #1
krbuerg
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Join Date: Apr 2010
Where to begin?

Hello!

My story with this disease started when I was 12. Went to my mom's GI and he told me I had IBS and to take Immodium and Metamucil. Went back when I was 16, told the same thing. Went back @ 31, to the same doc. I had been bleeding off and on for a few years and thought I should get it checked out since several family members had colon/rectal cancer. This info motivated the doc to run the usual tests of colonoscopy, endoscopy, biopsy, celiac's. Found the strictures in the ilieum and the biopsy confirmed Crohn's. That was 8/07. Started Entocort, Pentasa, pred to try to control the cramping and other symptoms. Well, nothing was working. Right after Christmas, my doc suggested a resection. Had the surgery in 1/08. After surgery, I started on 6MP, B12 injections and iron tablets. Things were going ok-still not convinced that I was all better. After several months on 6MP, my liver acted up and I had to stop taking it. At that point, I voiced that maybe I didn't need any drugs and I should "wait and see" what happens. Well, in 2/09, a year after surgery, there was no evidence of Crohn's during the colonoscopy. But, I began having several BM's, blood, etc. Doc said it was all due to post surgery. He did another scope in 10/09 and again, all clear. I got smart after that and decided to switch doctors. I saw the new guy in 1/10 and his first priority was to get my flare under control. He BELIEVED me! He put me on pred. That seemed to bandaid the situation, but in March I started a downward spiral. He ordered his own scopes and found the strictures, ulcer, and polyp that apparently wasn't there for the other doc to see! I started Remicade treatments and I go for my 3rd this Friday. I am also on methotrexate, folic acid, and pred. I have continued downhill and now to the point where I can't eat b/c the cramps are so bad. The blood continues and can't figure out what is triggering it!! Doc is increasing the Remicade dose and told me to start thinking about another surgery. This is just not what I was expecting 2 years after my first resection.

I think I am finally admitting to myself that I have this and it is going to be with me forever. So often, I try to be normal, esp when out with friends and family. But, that just isn't going to happen.

Personally, I have a WONDERFUL and SUPPORTIVE family! My husband is unbelievable. He recently lost his job, but it has been a true blessing! He is a stay at home dad to our children and niece. This has allowed me to focus more on my career as a teacher. And, btw, having Crohn's and teaching should be antonyms!! Thankfully, the bathroom is right next to my classroom! I just recently shared my disease with my students (5th graders) just because I have been out more and want them to have some sort of an explanation! I use every ounce of energy at my job. When I come home, I totally crash. And that is my other issue-I just feel like I am not doing enough with my kids. No more walking the neighborhood, going to the park, etc. UUGGHHH, I just can't wait for all this to pass!!!!

I really appreciate your insights and opinions to help me and others through this!!
04-27-2010, 01:23 AM   #2
misscris
Senior Member
 
Join Date: May 2009
krbuerg. Sorry to hear you've gone through so much lately, hopefully the increased Remi will help you to get on the raod to healing soon!
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Crohns Diagnosis: March 2009
Resection and Abcess March 2009

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04-27-2010, 07:21 AM   #3
Crohn's 35
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Join Date: Oct 2009
Welcome to the forum krbuerg! My you have been through alot. One good thing is you have great support at home and your ability to teach your school children some awareness. I often wonder how some Crohnies are able to work. I haven't worked in 10 years.

My first resection after a year long diagnosis was a laproscopic surgery, it was 18 years ago but I do remember bouncing back really quick and had 7 good years. Then I had a second one in 2003 and has been a nightmare from the get go. I have been on Remicade, 6mp, Prednisone just way too many times, Humira and now Methotrexate. Cimzia isn't in Canada yet and my GI thinks it wouldn't work anyways. So the methotrexate seems to be doing most of the job.

It is hard to avoid this disease because it is unpredictable, and living a normal life is hard for some. Surgery is hard on the body but it is now said that surgery is NOT the last resort, it depends on the disease, and where it is. I do not bleed, so I guess that is a blessing?? I do not take iron pills but I heard they can be very hard on the gut. Good thing you had "fresh eyes" for a better dx. I have been to a few Gi's, and some scopes are clear, only because they couldnt get past the certain point. Some Gi's are good, some are not. Going to stop rambling here so welcome and there are a great bunch of people here and a few other teachers. Hang in there ok. Keep us posted!

Penny
04-27-2010, 09:11 AM   #4
Astra
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Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

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Hi krbuerg
and welcome

yes I agree! You've been thro the mill, and I can totally empathise! Changing you doc was a blessing and I'm glad you finally got your dx.
holding a job down is hard, I teach kids with ASD in a special school, and I returned today for the first time, having had 4 months off, major flare and a week in hospital. They bombarded me with questions, (they are high functioning Aspergers) so I told them everything, and how difficult it is sometimes, they could empathise and relate because of their condition, and promised to look after me, bless!
hope the Pred kicks in for you, it certainly saved my life back in Jan, and the Remi too, and great that you have such a wonderful support system too, glad you found us, lots of support and hopefully some laughs too!
lotsa luv
Joan xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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04-28-2010, 09:03 PM   #5
krbuerg
New Member
 
Join Date: Apr 2010
Thanks for the warm welcome! I look forward to learning more about the disease and ways to cope!!
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