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Crohn's Disease Forum » Surgery » Just had small bowel resection. Do I still have Crohn's?


08-20-2014, 10:36 PM   #1
SArren
 
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Just had small bowel resection. Do I still have Crohn's?

RE: Strictures may also be treated with a small bowel resection. In this procedure, a segment of the small intestine is removed- all the disease parts, about a foot in my case - and the two ends of healthy intestine are joined together (anastomosis).
A bowel resection may offer patients many years of symptom relief. If they cut out all the bad and now it is all good Do I still have Crohn's and WHY would I continue to take Imuran?? I don't understand- in my mind the Disease is gone and I no longer need an immunosuppressant.
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Crohn's since October 2013
Prednisone 40mg daily
Azathioprine (Imuran) 150mg daily
Infliximab (Remicade) :4th Infusion late June 2014
Surgery Resection small intestine August 13 2014
08-20-2014, 10:44 PM   #2
Cosmojo
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Really great question, so the active part of your disease is now gone but Crohn's is reoccurring even after surgery so the Imuran keeps you immunosuppressed to try and keep the disease in remission. Some Crohn's patients will see the disease come back right at the resection point some years later, most (if not all) will see the disease come back if not treated with something like Imuran or a biologic. The stricture is gone, but the disease still exists.
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Currently on:
wellbutrin, levothyroxin, propranolol, B12, multi vitamin, naratriptan, xanax

In the past:
Humira weekly- didn't work
Remicade every 6 weeks- had lots of side effects after being on it for 4 years
Prednisone & all steroids- I get manic episodes so I can't take
Pentasa- didn't work
Imuran- not currently using but did seem to work
MTX- stopped, my kidneys were getting lots of infections

Just trying my best to get through graduate school
08-21-2014, 11:21 AM   #3
SArren
 
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Imuran?
So this is a big issue for me- whether to continue taking 150 MG Azathioprine every morning; or not. My feeling at this point is logically I don't know that I buy into the whole “Crohn's disease is still in my system” - they cut out all the diseased part of my small intestine, I mean (I'm not a scientist, haha) but I think I need some more hard research- it seems to me that if they cut everything out they took out all the bad, connected together the good with the good and now my favorite saying is... “its all good.”

Why would I want to take a pill that suppresses my body’s own healing natural power- my own immune system which is now there to help me through life day -to-day -- if there's no active Crohn's disease it needs to fight against, right? say even in theory there's some Crohn's disease cells hiding out somewhere in the back shadows of my biological system- so what? they are not doing anything, so if they're not doing anything, why do I need to fight them?

The idea that maybe there is a potential in the future for the Crohns to actively start attacking my intestinal tissues again well? I don’t know. Do the problems associated with immuno suppressants outweigh the unpredictable potential for Crohns based on future fears? and if I'm a believer in my mind can heal my body & every day I am consciously creating a healing space within my conscious mind towards the theory of affecting my subconscious mind in a way to reprogram negative thoughts and create healing in a whole body system way right? get what I'm saying?

How can I balance that with the behavior of taking a pill every day that is killing my own body’s healing powers? I don't know what to do. I welcome all feedback. Thanks for reading.
08-21-2014, 11:40 AM   #4
Cosmojo
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I gotcha, although I understand your skepticism Crohn's is never gone, it has no cure (yet, maybe one day ) It has genetic factors, there has no been evidence that it can be cured, only put into times of inactivity.

I understand not wanting to suppress your bodies immune system, and you have the choice to not take the meds, but its something I would have a long conversation with your doctor about. I do also agree that the a positive attitude can help out a lot, but frankly I don't think just because you don't want to be sick that you won't be. I have done the alternative medicine, but thousands of years has brought us to modern medicine- they know what they are talking about most of the time. Every pill has side effects, but what is worse potential side effects or the chance your disease will come back? Studies have shown that if you don't suppress the disease that when it comes back it will be harder to treat, and more severe.

I understand what you are trying to say but I have severe Crohn's and they would have to cut out ALL of my intestines for it to be gone- I've done yoga, acupuncture, positive feedback, prayer, and as much as I would love to believe you are right, I am still sick, and if I could just take only 1 pill a day to make sure I didn't have to deal with all of this again then I would- without a second thought. I completely respect your opinions and the validity of them but I would consider this, if your mind could completely heal your body then why did you require surgery at all? If you couldn't heal yourself then how can you be sure it will work forever?

Just stuff to think about.
08-21-2014, 04:40 PM   #5
If*
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Can you ask your Surgeon if ALL signs of CD were removed or was it a 'bowel preserving' operation ~ often meaning that only the most seriously damaged area(s) were removed. Sometimes active CD that has not destroyed the tissue is left in.
If ~ you are not comfortable with the current medication ~ go back to your Dr. and ask lots of questions. Example : What will happen for certain if you stop? Is is possible to see how you do med free? If you notice 'symptoms' what med will be recommended? At the end of the day, it is your decision. It is a tough one and we all struggle with trying to make the ones we feel are right. No one can say what is right for you. Keep asking your Dr. questions.

I am like Cosmojo, my CD is through out and I would be left gutless stomachless if all CD was removed.

High intelligence ask questions ~ keep searching and learning. You will never regret knowledge.

Hang in there.
08-21-2014, 05:22 PM   #6
IofNewt
 
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Imuran?
So this is a big issue for me- whether to continue taking 150 MG Azathioprine every morning; or not. My feeling at this point is logically I don't know that I buy into the whole “Crohn's disease is still in my system” - they cut out all the diseased part of my small intestine, I mean (I'm not a scientist, haha) but I think I need some more hard research- it seems to me that if they cut everything out they took out all the bad, connected together the good with the good and now my favorite saying is... “its all good.”
I had a resection just last year, but already have a recurrence. You might get a break from your symptoms, but you still have Crohns.
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Diagnosed with Crohn's in the 1990's
Treated with Flagyl in the past, but now taking Purenitol.
Started with Remicade Aug 6, 2014. Also using Imodium
Had resection in June 2013, but have a recurrence
already.
08-21-2014, 08:01 PM   #7
HARVinTX
 
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RE: Strictures may also be treated with a small bowel resection. In this procedure, a segment of the small intestine is removed- all the disease parts, about a foot in my case - and the two ends of healthy intestine are joined together (anastomosis).
A bowel resection may offer patients many years of symptom relief. If they cut out all the bad and now it is all good Do I still have Crohn's and WHY would I continue to take Imuran?? I don't understand- in my mind the Disease is gone and I no longer need an immunosuppressant.
Crohn's is an autoimmune disease. Your stricture was a result of your immune system attacking itself and fibrous tissue building up over time due to the inflammation. Your stricture may have been removed but you still have an autoimmune disease. The immunosuppressants work to stop your body from attacking itself (when they work). The reason to continue after a resection is to decrease the chance of a recurrence.

I had my first resection in 2002. It was a great success and I chose not to take immunosuppressants after surgery. I developed another stricture and after 6 obstructions, I had it removed 5 weeks ago. Again another success but this time I went back on my Humira.

If you can't tolerate the Imuran (I couldn't), then I recommend speaking to your GI about other biologics. If you wait until you start having symptoms again, then a lot of damage has likely already occurred.

I hope you continue to reach out for support and continue to read the great amount of research that is available via this forum and online. Also, there is no such thing as "Crohn's disease cells" as you would see in cancer or a viral illness like hepatitis C.

I hope you have a speedy recovery!
08-21-2014, 08:23 PM   #8
Orchid
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Crohn's is NOT an autoimmune condition, it's immune meditated. There's a world of difference. SArren, the root of the problem still there, genetic errors related to the innate immune systems ability to detect and target pathogens in the GI tract. Even if they cut out every single inch of diseased intestine the surgical scars left, called adhesions, are favorite places for Crohn's to start over again , sometimes within weeks of the surgery. Even worse, those who stop taking medication after they go into remission have shorter remissions and more aggressive flares, if you stop taking medication you're not just hurting yourself now, you're investing in suffering for the rest of your life due to surgery complications.

Surgery is not a cure for Crohn's, it's a little kid sticking his finger in a dam.
08-21-2014, 08:37 PM   #9
HARVinTX
 
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Crohn's is NOT an autoimmune condition, it's immune meditated. There's a world of difference. SArren, the root of the problem still there, genetic errors related to the innate immune systems ability to detect and target pathogens in the GI tract. Even if they cut out every single inch of diseased intestine the surgical scars left, called adhesions, are favorite places for Crohn's to start over again , sometimes within weeks of the surgery. Even worse, those who stop taking medication after they go into remission have shorter remissions and more aggressive flares, if you stop taking medication you're not just hurting yourself now, you're investing in suffering for the rest of your life due to surgery complications.

Surgery is not a cure for Crohn's, it's a little kid sticking his finger in a dam.
Orchid: Please do tell me "the world of difference" in immune mediated vs autoimmune disease. Your statement lacked any evidence of distinction.

"An immune-mediated inflammatory disease (IMID) is any of a group of conditions or diseases that lack a definitive etiology, but which are characterized by common inflammatory pathways leading to inflammation, and which may result from, or be triggered by, a dysregulation of the normal immune response. All IMIDs can cause end organ damage, and are associated with increased morbidity and/or mortality.

Inflammation is an important and growing area of biomedical research and health care because inflammation mediates and is the primary driver of many medical disorders and autoimmune diseases, including ankylosing spondylitis, psoriasis, psoriatic arthritis, Behcet's disease, arthritis, inflammatory bowel disease (IBD), and allergy, as well as many cardiovascular, neuromuscular, and infectious diseases. Some current research even suggests that aging is a consequence, in part, of inflammatory processes."

Reference: http://www.idid.us
08-21-2014, 08:53 PM   #10
If*
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Well, if inflammation causes aging then thank goodness ~ without it I might really look like a kid LOL, (I'm kidding) I do look young for my age and surprisingly healthier then most presumed 'well' people.
Do many of you find the same? Looking younger and healthier? Unless really being trashed by this CD then I look really really old. (Spell check wants ole')

Seriously, inflammation blows and is often a trigger for cancer.Which is why even diet plays an important role in combating this crappy illness.
08-21-2014, 09:05 PM   #11
Orchid
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There are no autoantibodies, the body is not explicitly targeting it's own cells for the sake of it, none of the genes involved in Crohn's have even been linked to the production of autoantibodies. They are in fact almost universally linked to malfunctions of genes involved in the immune response, especially those involved in the immune system's ability to target bacteria. At this point things get hazy but something causes the adaptive immune system to swoop in and attempt to clean, except it can't because it's got the same failures. Leading to a massive sustained inflammatory reaction.

The distinction here is the body isn't explicitly targeting the gastric system, it's just happens to be the canvas, the paintbrush is a chainsaw, and the painter is an old blind guy named Ernie whose got a twitch. Autoimmune conditions are all immune meditated but not all immune mediated conditions are autoimmune, for example, AIDS.
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