I'm a newb

[stickman7755]

Hello Everyone,
I was just diagnosed in mid September. I was hospitalized in July for a really high fever, vomiting, diarrhea, and my liver functions were up. In mid September I had a mild pain in my lower right ab. I was paranoid since I was just in the hospital a few months before so I went to the doctor, thinking I had appendicitis. The doctor ordered a CT scan and after 5 hours in the waiting room the doctor came out and told me my Crohn's was flaring up. It really freaked me out initially, but my cousin also has Crohn's so I knew a little about CD.

I was in the hospital for 5 days because I had an absese and my terminal Illieum was inflamed. The antibiotics took care of the absese and I was put on Predisone. Ive been on that for 4 weeks and was put on Imuran two weeks ago.

Im currently training for the rock and roll half marathon in Vegas on December 4th to raise money for the CCFA. I do feel a lot better on days that I work out. It seems like staying in real good shape helps people with CD.

My GI called me this past Friday and told me the Steriods weren't really working and that Surgery or Remicade were two options. After reading about it, I'm leaning towards Surgery.

Any suggestions? thanks

I'm really looking forward to being involved on this forum, it's a relief to be able to talk about CD without grossing people out, lol.

 

[chrisnsteph1022]

I'd try just about any drug before going for surgery. Once it's gone, it's gone. And the CD will usually come back where they reconnected. Plus, you'll need to be on maintenance meds after surgery anyway. So I'd definitely try the drugs first.

 

[kss]

Hey Stickmann,

I had right lower quad problems for a long long time. My technical diagnosis was moderate to severe Crohn's disease of the terminal illium. And surgery was the best thing that ever happened to me. I was on biologics for a long time because that's the conventional wisdom. Do durgs and leave surgery for later. I think this way of thinking is terrible and you should really figure out what's best for your case. Having a successful surgery for me was a huge improvement. And lets face it the drugs are just prolonging the inevitable anyhow. Most likely and I don't know for sure but the sooner you have surgery the less bowel they'll have to take. And biologics have a shelf life ya know. Remicade won't work forever.

I was at a Crohn's convention in Chicago a few years ago and there was a physician there advocating surgery before diving into the drugs. I was so shocked - it's unintuitive and unconventional but given my experience he's spot on!

I had 1.5 meters of small bowel removed in Feb 2007. Currently I don't take any medications for Crohn's. I do an anti-inflammatory diet and I add psyllium husk powder to some water or juice a few times a day. It helps to keep from going to the bathroom a lot. And to cut down on gas I've found that a digestive enzyme helps as well as probiotics.

Best of luck collecting info!

 

[stickman7755]

Thanks for the advice!! I really appreciate it.

Financially I think surgery makes more since for me too, I'm only on my parents insurance for 2 more years and after that I'm unsure what will happen. If I go on remicade, I dont think i will be able to afford it if I cant find I full time job with good insurance within two years.

 

[kss]

My surgeon was Dr. Boffa. He's in Chicago - it's called Boffa Surgical Group. I'm very happy with the results. He was good at explaining things. I also had my gallbladder and appendix removed in the same surgery.

Mine was a double resection so there were two distinct parts which got cut out. One was described as a "fist sized mass" and the other was diseased small bowel.

 

[stickman7755]

I'll have to check him out since I live 30 minutes west of Chicago. It would be nice to have surgery closer to home.

I have heard really good things about the Mayo Clinic in Minnesota.

Anyone know how to edit your location?

 

[xJillx]

Hi and welcome! I am sorry the steroids aren't working for you. From everything I have read, surgery should always be the last option. I know money is a concern, but Remicade does offer assistance for those in need. There is a member on here who doesn't pay a dime for her treatment! Perhaps you should ask your GI about the different assistance programs available before making a decision.

 

[Del]

Hi Shawn and welcome to the forum here.
I cant help with your query...just thought I would welcome you none the less.
Take care...

 

[stickman7755]

Thanks everyone for being so welcoming!!!

Jill, I'll ask my doctor on Friday about assistance programs for Remicade. Thanks for the advice.

 

[David]

Greetings and welcome

If it was me, I would certainly try to avoid surgery by trying things like enteral / elemental nutrition, a major change of lifestyle, and maintenance drugs first. Surgery certainly is the right decision for some people at a point, but surgery is NOT inevitable and with all the advances being made every day in medical science, the more time you give yourself, the better your chance of not having something that can't be reversed one day. And you also have to look at the importance of your intestines. Remove your terminal ileum and you're going to be on B12 injections and have other vitamin and mineral deficiencies because of it.

Anyway, good luck to you. Keep us updated

 

[stickman7755]

Update:
I just got done seeing my GI doctor. He told me that the predisone and Imuran were not effective and that surgery is the only option. He said that even if I want on remicade the chances of it doing anything were very slim. The worst part is he said I probably won't be able to run the half marathon in December However, there is still a chance I will be able to:smile:

It sucks knowing I have to have surgery but it is a relief knowing what I have to do. The worst part is possibly not running the half marathon.

I just started setting up appointments with surgeons in the area to try and find the best/right one for me.

Shawn

 

[glory_h]

Hi Stickman,

I think you'll be good! For me, surgery was the only thing that worked after a certain point. But like David said, there are long-term side effects of surgery, too, which I really wasn't educated about when I had my surgery. I was young, so maybe my parents were educated about it? Not sure. Anyway, my advice to you, is to get as much information you can about the effects of having part of your intestine missing, and what you can do to make sure you are getting the proper nutrition. I haven't had to have B12 injections even after 10 years post-surgery, but I do try to have a balanced diet and focus on certain areas that I know I am prone to be deficient in.

Good luck on your surgery!

 

[DustyKat]

Hi stickman and :welcome:

Imuran and steroids did not work for my son either. Having said that they probably stabilised his condition but they weren't going to heal him. He also had an abscess but it was found he had a fistula as well, is this the case with you? If so then surgery would basically be your only option. The biologics are notorious for not being able to heal fistulas originating in the terminal ileum so perhaps this is what your GI is alluding to and suspects.

Both of my children have had the same surgery you will be having and so far have had an excellent outcome. My daughter had hers 5 years ago and has been in remission since then and my son had his in April and is in remission also.

Good luck and welcome aboard!

Dusty. xxx

 

[stickman7755]

Update:
I met with the surgeon today, it looks like I will be having surgery December 7th to remove a foot or so of my terminal illieum and part of my colon. He said he is going to try laparoscopic surgery but he said my terminal illeum is like a concrete pipe so he thinks it will end up being open surgery.

The good news is that I hope to still run/walk the rock and roll half marathon in vegas on December 4th. If I can't my girl friend will run in my place.

Shawn

 

[kss]

Good to hear! Let us know how it turns out. I was feeling better about 2 weeks after mine so hopefully it'll be similar for you. Mine was open so I have the big scar although it's faded a lot.