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Surgery versus Maintenance meds.


Mon, August 15, 2011 12:32 PM

Hi all.  I was diagnosed with Crohn's about seven years ago.  I'm 35 and have only had a few severe flares since the diagnosis.  Last summer, I was hospitalized with an obstruction and they pumped me with steroids to try to avoid surgery.  Fortunately, they were successful.  However, since then, I've not taken a single pill.  Because my symptoms are less severe than some other patients, I tend to brush it off as mild and manageable.  I do not want to be taking medication for the rest of my life. Over the last year, I've had a couple minor episodes--mostly abdominal pain--and issues with diarrhea and constipation, but nothing as bad as last summer.  My GI knows I'm not interested in daily meds and said that although he normally doesn't encourage surgery, I might be a good candidate because my crohn's is only in the ilium of my small intestine and fairly easy to remove.  He said I'd have a 50/50 chance of not experiencing any more symptoms.


So, I'm just wondering if anyone else has had a similar experience or has heard similar options?  I know how I am...a horrible patient...and I will wait until something bad happens again to act.  But in the meantime, I'm curious what others experiences have been with surgery or daily meds.  I know what my experience is like without either and I'm not sure it's worse than the side-effects of the medications!

FPO bcp
Joined Aug 15, 2011

Sat, August 20, 2011 12:44 PM

 Reply posted for bcp.

I can't explain it as well as Alan bc he's done A LOT more research in probably a lot more time than I have, but google paleo, gaps, and sc diet... and there should be a lot of info about them on the diet threads of this forum too.

If you think the diets seem really strict, and feel a little overwhelmed, don't think you're the only one, I totally felt that way when I started too... but since I don't have any active disease right now I got to jump right in instead of having to live off of broth before I started... and that makes it easier.  I still don't follow the diet 100%,  and I haven't even really decided which one is my best option... but I'm getting there with it.

FPO neverending
Joined Dec 8, 2010

Wed, August 17, 2011 7:48 AM

 Reply posted for alanschachter.

I'm definitely for other options.  What are they?  

FPO bcp
Joined Aug 15, 2011

Tue, August 16, 2011 11:48 PM

 Reply posted for alanschachter.

I realize surgery isn't an end-all cure.  I guess I just wonder which risks are riskier?  The side effects for many of the medication options just seem terrible.  The first thing my GI wanted to put me on was an immunosuppressant.  I turned it down.  Despite having Crohn's, I am NEVER sick with colds or viruses or anything "normal" and I didn't want to lower my immune system.  That just seems silly given my situation.  Then he wanted to put me on antibiotics, which were "safer" but I read a lot of info that didn't make them seem worth it either.  I am a medical skeptic by nature, which is not helpful, I realize, but I'm very weary of taking a daily pill.  In the past I've had numerous allergies and bad reactions to pills.  I can't even take birth control, to be honest.  So, I wonder, if I had surgery would it keep me symptom free longer than pills would.  I guess there's no way to just know.  I appreciate everyone's feedback. 

FPO bcp
Joined Aug 15, 2011

Tue, August 16, 2011 1:01 PM

 Reply posted for bcp.

I can't say that I really ever have followed a diet yet.  For the first couple of years my disease was not very active, and I avoided ham, pork, and nuts because they were the only things that I really noticed made me feel any worse than anything else, and even then the pain went away on its own within a couple of days, so I didn't follow through with that either, I just ate those things once in awhile figuring that it just might make me feel a little sick for a little bit.  I'm doing some research on gaps, sc, and paleo now.  For the last week or so I've been eating mostly meat, eggs, fruit, and cooked veggies till I get the hang of it. Since explaining my whole story is too long for this forum, I just typed it up on a blog thing. Here's the link if you want to see it.I really didn't do much of anything until my disease got pretty severe.  I guess hindsight is 20/20 http://mycdstory.blogspot.com/2011/08/in-october-of-2008-i-was-diagnosed-with.html

FPO neverending
Joined Dec 8, 2010

Mon, August 15, 2011 8:47 PM

 Reply posted for NeverEnding.

Neverending--I'd like to hear about your diets and what has worked and not worked for you.  So far, I've been able to figure out which foods to avoid for the most part, but I don't always follow it.  Especially since sugar seems to be a biggy for me.  My sweet-tooth is winning!  

FPO bcp
Joined Aug 15, 2011

Mon, August 15, 2011 7:02 PM

 Reply posted for bcp.

I've had part of my colon removed bc of CD, and it has helped me.  I think that surgery is beneficial once its needed.  That said, its not a cure. Since CD can occur anywhere in your digestive tract, you're likely to just flare in another area at some point in time.

I don't think my advice would be to immediatly have surgery. If you can avoid most of your symptoms by following a diet and taking a mild med for maintenance... which you'll likely have to do after surgery anyway, it isn't even worth it to have surgery done in addition to those things. It would be nice if we could just cut the CD out, but it just doesn't really work that way =(

I actually think I could have avoided surgery if I would have refused some of the more harsh meds I was on, changed my diet, and looked into LDN a lot sooner than I did.

If  you decide to start a diet, I'm new to it too, right now I'm kind of between 2 diets so it's a little weird... but if you do decide to start one let me know... we can be new at it together =)

I hope that whatever you choose to do ends up working for you!! Take care of yourself!

FPO neverending
Joined Dec 8, 2010

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