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question about stricture and surgery

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Crohn's Disease
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Posted 7/15/2010 7:10 AM (GMT 0)
Hi everyone, after being in the hospital two times in the last three months, I have decided I must start thinking about a resection.  My doc doesn't fully agree because I haven't used Remicade and Humira yet, but I'm sick and tired of medicines, and now, even with 35 mg of pred, I still don't feel good.  Plus I'm so anxious everytime I eat that something is going to get stuck in there.  I just want to feel normal again, even if it's just for 2 years.

I'm thinking on visiting a surgeon and get a 2nd opinion about surgery, but I'd like to do it in September, so that my family doesn't miss the summer holidays, plus I don't have anyone to help with my kids until September, and my husband is working full time.

Are there any ways of avoiding obstructions through this time?  We know for sure that the stricture is approx. 30 cm long, but what we don't now is how thick it is.  Last time I had tests, this part was very thick, but it was also inflammed, so they don't really know how much of it is scar tissue, although the doc is certain that most of it is scar tissue.

Don't get me wrong, I'm scared of surgery, anesthesia and the possibility of not waking up.  I cry about it every night, and this does not help my symptoms.  I'm starting being paranoid about how many times I have gas, and even a small pain can make me nervous about going to the hospital.

Thank you for your support,

Christina

Posted 7/15/2010 10:53 AM (GMT 0)
Hi Christina, I had resection surgery back in January and don't regret it at all. I'm no longer in pain everyday and I can actually eat veggies and fruits now YUM. My surgeon said some of my pain was coming from scar tissue from surgery years ago but that the stricture was so tight and small he was amazed I could even eat. I'd go for the second opinion. Also have you had a CT enterography or the like? This is what really diagnosed my stricture since the scopes couldn't fully get to the spot it was in. When I was waiting for surgery I drank alot of supplement drinks like Boost(not sure you have this in Greece). I ate soups, soft foods and the like. I couldn't even tolerate any meats for a long time but that has changed.

Good luck and let us know what's going on.

L.
Posted 7/15/2010 11:19 AM (GMT 0)
Thanks lamb61 for your advices, where you afraid to have the surgery like me?  I'm terrified that something might go wrong, it's destroying my life.  I'm always thinking that I will die and my children will be left alone...  I don't know maybe it's just the pred talking.  But I'm scared.

Posted 7/15/2010 2:59 PM (GMT 0)
I was a little apprehensive but not scared. I've been through surgery before and the only issue I've ever had was nausea post op. I'm guessing it is the pred talking that stuff really screws with me too.

Are you going to get the second opinion?
Posted 7/15/2010 7:42 PM (GMT 0)
I had a resection surgery in 2007, and before I had it, My GI was against it because he said there were many more options, but I talked with my surgeon and he was very much for it. thats usualy how it goes. But having surgury was the best decision i ever made. its been three years, and im just starting to not feel good again. My surgeon had given me 5 years at most (because of how severe my crohns is) before i was back in the hospital. Think posetively, it does wonder. The only thing I was afraid of (as ridiculous as it sounds) was having a catheter lol. your on soo much medication after surgery you dont really notice anything. I've had alot of surgeries and I've never had any problems *knocks on wood*
Posted 7/15/2010 8:02 PM (GMT 0)
If your stricture is caused mostly from inflammation I would consider trying the Humira and Remicade.  If so these meds can open up the stricture so you would not need surgery.  If you look at the rates of people who require additional surgery chances are at some point you will need it again.  The condition is chronic and will come back at some point so the longer you can hold off the better.  I am in the same boat as you except I am on Humira now and just got diagnosed with a small stricture in my descending colon due to inflammation.  My GI was able to dialate back open and hopefully the inflmmation will pass and that will be the end of it.  Maybe this is an option you can discuss.  If the stricture is all scar tissue then I would definitley consider surgery.
Posted 7/15/2010 9:01 PM (GMT 0)
I would DEFINITELY go the biologic med (Cimzia, Remicade, Humira) route before you even consider surgery. Once you have surgery, there's no going back, except to have more surgery. You only have a limited amount of intestines preserve it as long as possible! I know it's frustrating when it seems like the meds aren't working and the pain is unbearable but if you have other options besides surgery, exhaust them.
Posted 7/15/2010 9:36 PM (GMT 0)
I'd go for Remi/Humira before surgery. If you're unlucky like me, that will cause rapid healing which leads to making the stricture worse, but it's better than just going straight to surgery. I still think having my resection is one of the best decisions I've made.
Posted 7/16/2010 12:45 AM (GMT 0)
I'm having surgery next month and they put me on Humira a few weeks ago. They said this will actually shrink my stricture and may cause me to have emergency surgery. They didn't really give me the option not to have surgery. I'm not too scared, just ready to feel good and normal. Tonight I'm in pain which makes me want it even more. I think it's important just to take care of it. Get that bad stuff out of you! It's not that risky of a surgery either. Just come in somewhat healthy before surgery. This will be my first. I was diagnosed at 10 years old. I'm now 23.
Posted 7/16/2010 1:28 AM (GMT 0)
I do wish I would have been given the option of trying Remicade first, anything but steroids. I had the surgery because I was so sick from the meds I couldn't take it anymore. I had obstructions for 5 years and it ruled my life. I had to plan my life as if I would be in the hospital the next day. My 12 yr old daughter would randomly cry throughout the day and night because she was afraid I was going to die. It was miserable for everyone. I had my resection in 2006 and haven't had an obstruction since...... knock on wood.
Elizabeth
Posted 7/16/2010 4:49 AM (GMT 0)
In 2006 my daughter had a stricture which the docs thought was mostly scar tissue - within weeks of being diagnosed that year, she heard a doc say surgery might be a good idea.  

Instead, she opted for Entocort and managing her diet - three years later, in Spring 2009, a SBFT and colonoscopy confirmed the stricture was gone...we couldn't believe it.

If your doc thinks meds might work, then by all means try them before resorting to surgery.  As long as you have other options, it makes sense to use them.

Surgery cannot be undone. There's no guarantee it will put you in remission, or if it does, keep you in remission for very long. Even after a successful surgery, you will still need to identify which meds help keep you in remission.

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