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Hi All,

I'll keep this short!

I made an appointment with a surgeon to discuss my options for controlling my crohn's. I've exhausted every other avenue and I'm ready to look in to it.  My GI doc says I have a 'simple' case..although painful and annoying, I do not have the fistulas, abscesses, malnutrition, etc that other sufferers have. I have constriction in the terminal ileum and a small portion of the cecum. My inflammation response indicated by C-reactive protein in my blood is 700% more than what it should be!

I am hoping, praying, that the surgeon can do stricturplasty instead of a resection, as the research I've done leads me to believe I am a good candidate for it.  Has anyone had this procedure done? I'm a paramedic and personal trainer without disability insurance (trust me, I've tried every avenue!) and really don't want to be out of work for months. I'm also scared to have the NG tubes, foley, drains etc that others need. I've seen that side, not pretty, and I admire anyone who endures that!

Also, I'm seeing that laproscopic surgery is becoming more common for simpler cases like mine.  Anyone have any ideas?

Thanks and be well!

 Reply posted for CrohnieMedic.

Hello

I am new to this.  I have been dealing with Crohn's for about 5 years.  Since I also have Psoriasis, I have been taking enbrel and it seemed to have lessened the cramps and outbreaks.  However, went back to the doc because of about 6 months of cramping and loosing wieght (down 50 lbs in 5 years).  Long story short, I will have to have surgery as I have 6 structures and 6 ulcers in the small intestine.  I met with the surgeon today and he stated that he will most likley be able to do the surgery scopically, reducing time off of work from 2-3 monthsto 3-6 weeks.  Oh yeah, and may not need a "bag" (WOO HOO)

My concern is switching medications.  My wife and I have yet to have children and were planning to start this fall.  I am not sure and can't seem to get any straight answers concerning effects on being able to have children by Humira, Remicade, or Imuron. 

By reading these forums, it certainly sounds like the surgery will enhance my life.  At 37, I don't think being 155lbs is healthy, and I am looking forward to being able to eat "normally".  For those worried about "bags", tyhink about what life would be like with consistent bowel issues versus taking a time-out to empty a bag, which for most cases may not be permanent.  Feel free to emial me with comments or just to chat ktbdb@windstream.net.

Later

Keith

 Reply posted for CrohnieMedic.

My 15 yr. old son has Crohn's. Last month he had laprocopic surgery. He had 2 feet of his small intestines removed and 4 stricture plasties. He had an excellent surgeon. Had the catheter in 2 days then removed. He said it was uncomfortable but better than getting up to go to the bathroom. He had two small incisions below his bellybutton. Feels 150% better. He says he would do it again. Before surgery  he couldn't take anything by mouth-liquid or solid, now he's eating up a storm. Finally gaining weight after 2 years! Good luck, stay strong, through the worst part of it all, we just kept saying "you'll feel better tomorrow" and each day he did feel better and better. Today, one month later, he feels real good :)

 Reply posted for Panda.

Hi Amanda!!

Can you email me directly so we can chat? I like these message boards but I don't always remember to sign on here..and it's nice to talk to someone one on one.

Surgeon needs to see CT scan which I have scheduled for Thursday.  Basically strictureplasty isn't the best option.  Resection is better at this point, as it's localized and not complicated.

Email me...MedicChic369UPVA@aol.com

Thanks!!

April

 Reply posted for CrohnieMedic.

Hi April -

I've been thinking about you - how did you go with your surgeon?  Any luck with the laproscopic method for a strictureplasty?  Hope you are feeling a bit better - I know how tiresome pain, pain and more pain and a liquid diet becomes after a while.  Best wishes

Amanda

 Reply posted for Panda.

Panda...

Thank you SO MUCH for your advice! I've been researching laproscopic surgery with strictureplasty and I think I may be a good candidate.  I meet with my surgeon tomorrow (I bumped it up two weeks because I'm in alot of pain). 

Thanks again, and best of luck staying in remission!

-April

 Reply posted for CrohnieMedic.

Hi - I've had two strictureplasties. The last was around 8 years ago for a stricture at the terminal ileum and went really well.  In Australia, around the time I needed surgery, there wasn't the advances they've made in laproscopic surgery - so, as a result, I was 'zipped' open from just below my chest to my pubic bone.  Of course the recovery is hard with such a large incision.  I had all the tubes - the NG was out within 24 hours, though, and really not so bad given that you're pretty wacked out on drugs.

The reason I'm writing though, is that last week I went to a medical conference on Crohn's surgery and saw the developments in laprascopic surgery.  It's incredible - 3 little incisions (about 2-3 stitches), with one in your belly button.  No disturbance of the abdominal muscles, which is brilliant (they never sit the same afterward a big incision) - but best of all, no NG, no drains and out of hospital and on a pretty normal diet within 4-5 days.  I urge you to seek a surgeon who will assess your case for this type of surgery - it will be so much better than a big abdominal job, especially given your job.

Good luck.

 Reply posted for tpaflmale.

Thanks for your reply!

I live in Pennsylvania and am lucky to have a nationally ranked GI department in Lehigh Valley Health network. I still plan on shopping around a bit for a surgeon but the first one I chose to consult with specializes in crohn's and colitis and from what I understand, has performed many strictureplasties in the past.  I have a list of questions for her!

I am a very healthy person, usually! Right now I'm on the ever famous low residue, boring, bland, junk food diet and HATING it! I was training for a marathon and I'm a personal trainer..so nutrition is super important to me. I also supplement with a product called Juice Plus+. My doctor wanted me on it and I liked it so much I started distributing it.

I guess I have this fear of tubes and stuff because I have placed them.  The times I've had to place NGs have been emergent, mostly related to overdoses and such...so it was an uncontrolled environment. I won't even go in to inserting foleys..!

I have my Remicade at the max dose starting on Tuesday...that will just buy me some time til surgery. I've been doing this cycle for almost a year now. Up until then I've been blessed with only minor flares and minor medication changes.

This will be my first (God willing, LAST) surgery and I'm hearing it's best to do it when your body is as good as it's going to be and not completely diseased, which makes sense.
It still scares me and I'm dreading it. Hopefully others will respond and shed some more light.  Thanks for your help!!

-April

 Reply posted for CrohnieMedic.

You didn't mention what type of surgeon you saw or where.  I would really look for a colo-rectal surgeon who has lots of experience with Crohn's and UC.  If they are associated with or trained at a teaching hospital that has extensive GI programs in medicine and surgery; so much the better.

I can't say if it is a simple surgery or not as my was done in 1992 at Baylor Medical Center in Dallas.  It was part of larger surgery for Crohn's, but having already lost half my small bowel, I wasn't about to lose anymore during this one.  I had to wait a couple extra weeks for the surgeon who was a specialist in this to be available.  That surgery combined with the newer drug therapies has finally allowed me to stay in remission for much longer periods and without further surgery.

Given the great strides in laproscopic surgery, I wouldn't be surprised that a skilled surgeon couldn't do it that way for your "simple" case.  Even if done that way, you still will probably have to do the NG tube, etc. But hopefully it will be shorter and most laproscopic procdures mean overall recovery will be much shorter.

My other advice would be to prepare for your surgery nutritonally by eating well and supplementing vitamins, minerals, protein, etc., as your conditon allows.  The stronger your body is nutritionally should also help lessen your recovery and speed healing.