Needing some help with crohn's

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a hurten unit
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/12/2010 6:57 AM (GMT -7)   
Hears my story
2 heart attacks in 2007 was diagnosed with Crohn's June 2009 , Gallbladder removed August 2009 tried to remove appendix with gallbladder but Terminal ileum to inflamed . I have pain to some extent every day since. Someday’s worse then others. I think I had 5 days in a row in January 2010 when I felt great every day all day. I live on yogurt, boost and peanut butter pretzel nuggets. I am ok with dairy. I am SCARED to eat anything else. When I eat something wrong I am down for 2 days or more. I have been on Cimzia 400 once a month, Entocort EC 3 times a day Nexium. I have a stress full job dealing with the public at a auto dealership as the service manager
4 weeks ago I had a colonoscopy the doctor found small intestine closed off. The doctor said he had a hard time getting the camera through then opened the intestine with the scope
My Doctor is the most wishy washy Doctor I have ever met. I ask what to do, what medicine to take, he quotes you a bunch if studies and wants you to guess what to take? As a matter if fact I had to push him for the last scope that's when he found the ileum closed off. I have 8" of bad small intestine at the terminal ileum. My thinking is when my pain is "normal" should I push to have a bowel resection done while the intestine is less inflamed and less likely to have a problem with the surgery . Option 2 keep pushing drugs in me and wait for a problem that's out of control and in the ER for full blown iliam cutout 6 weeks with a bag and go back in to sew the two back together.
Do I play offence or defense, proactive or reactive ?????
Am I thinking to far out of the box?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/12/2010 7:09 AM (GMT -7)   
First off welcome to Healingwell. Just sorry you have to be here. I think I would get a second opinion from Colerectal Surgeon and see what they think. If you are suffering and can't keep anything down, it sounds like you definetly have a stricture. Has the doc said what is causing the narrowing? Is it just from inflammation or is it from scar tissue? If its from inflammation I would try the medications first as they will work for the inflammation. But if its comprised of mostly scar tissue then the meds really aren't going to do much. I have had 2 resections, and neither time did I have to have a bag. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/12/2010 8:22 AM (GMT -7)   
Agree with Nanners, get a surgical opinion and perhaps a new GI...?

It's at least time to try a new drug, I would think. Humira, as you may as well go to a biological, if you can.

As far as pouches go, they are by no means the worst thing. I waited 15 years to have surgery, probably should have done that sooner, and due to surgical errors I had to get a pouch, but you know I never felt better.

Proactive is probably the better way to go and those steroids (Entocort is a milder steriod) should help you be your best advocate.

If you have family or a close friend, make sure you bring them with you to your doc apts -- you will get better service. Hate to say it, but it's true.

Hang in there,
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Lare inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


a hurten unit
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/12/2010 10:09 AM (GMT -7)   
thanks for the reply
was just in the ER last week for pain they did a cat scann and stated there was no blockage . The ER doctor said he would change treatments but he was not my doctor . I asked ok if you where my doctor what would you tell me , he started to say the current treatment is not working then he stopped and refered me to my gi doctor . wow they cover each other good . if i remember they said it was scar tissue . i see my GI DOC tommarow . any ideas?
I can keep foor down but i eat something wrong i am down for 2 day
thanks
I need all the help i can get

MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/12/2010 10:21 AM (GMT -7)   
Keep track of what messes you up for 2 days and avoid that. Sorry, starting with the easiest.

Other than making sure you bring someone in with you, I'd say write it all down today. Make a list of your symptoms, effects, your weight loss. etc.

Ask for a referral to the best surgeon he can find. I think you need that expertise, since it shows your very narrow, will help you to figure things out.

Best,
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/12/2010 10:21 AM (GMT -7)   
Keep track of what messes you up for 2 days and avoid that. Sorry, starting with the easiest.

Other than making sure you bring someone in with you, I'd say write it all down today. Make a list of your symptoms, effects, your weight loss. etc.

Ask for a referral to the best surgeon he can find. I think you need that expertise, since it shows your very narrow, will help you to figure things out.

Best,
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.

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