Scared about surgery!!!! Advice????

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20Krystal12

20Krystal12

Joined
Sep 21, 2013
Messages
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So I should start by saying I have never used any of these sites before but I'm reaching out for advice and hope!!! I'm 29 years old and I've had Crohns for 11 years. I have a little girl who just turned 1 and ever since she was born I've been very Ill. I have a 2mm narrowing in my small bowel from scar tissue, there for I'm Having resectioning surgery in a few weeks. They are removing that and a group of fistulas that I have, that have opened in to my colon. I was just wondering who all has gone through this surgery, near the ellium area, about a foot of small bowel, and how your recovery was. I'm scared mainly cause I'm a new mom, taking time away from her and ending up having more problems then I already have. I dont heal very well, after having a 4th degree episiotomy with my daughter, i was on bed rest for 11 weeks becasue i wouldn't heal, so having another procedure, excpecially to this extent really worries me!!Any advice or help would be greatly appreciated!!! Thank you so much to whom ever takes the time to read my story!!!!
 
I am so sorry to hear about this.. :( I'm a 23 year old guy, my daughter will be turning 1 on the 16th, and I have a son due two days after. I am as well facing surgery in just a couple short weeks and I'm terrified!! :( similarly, I'm also relatively new to this support group kinda thing. I'm so happy I'm not alone! Lol
 
Nope your not alone, I normally just read everyone else's stuff, but then when I start reading only bad things I start to panic. What exactly are you having done?
 
I'm not sure exactly, I'm going to be meeting with the colorectal surgeon this week. I have strictures in my terminal ileum and also in my sigmoid and transverse colon. I'm honestly in such a severe amount of pain right now I'm contemplating going to the ER.. :( I ate a couple eggs and a few pieces of bacon about an hour ago, and all of a sudden I got this really sharp, hot sensation in the lower right area between my belly button and my hip bone and it's scaring me pretty good :(
 
From what I have read, if you have strictures due to inflammation, it is very likely that a medicine like remicade will make them worse. I think that is the problem I'm having. I was on remicade first when I was 14 until I was 17, ad then I stopped to try to cure myself with naturopathic medicines and ended up in the silverton hospital almost dead. I got back on remicade about 6 months ago after several trips to the hospital for abdominal pain and nausea and bloody diarrhea, and finally was able to get some relief from the remicade, but two months ago I had an infusion that I slightly reacted to, just elevated temp and blood pressure, 3 weeks ago I ha another remicade infusion and the reaction was much worse, and I believe it's because I have strictures and scarring.
 
I to have strictures and scarring but only in the illium and that spot in my small bowel. My pain is exactly where u are hurting right now, mine always hurts and will send me down to my knees when food passes by. So right now I'm on soft food till surgery, like eggs and stuff. But my weird thing is I've been on 100 mg of mercaptopurine for 11 years and it didn't work so now they are starting the remicade after surgery. I didnt know u could have problems with it. Man U have had a ruff ride so far, ughhhh we are still young, this sucks!! As smart as I feel like I am with this stuff, I'm so stupid still. Like terminal illium, yeah mines messed up too and I actually don't know what that is, isn't it just my illium, I get so confused!!!!
 
And congrats on the little guy coming, how fun to have one of each!!! I would have been pregnant again by now if everything hasn't gotten crazy with my health, I wanted ten close in age!!!;)
 
I had a bowel resection surgery over 10 years ago due to a stricture, I wish I had done it sooner. It gave me my life back. It took a good 4-6 weeks to recover, but I'd do it again in a heart beat. I still take a lot of Meds, really watch what I eat, and have symptoms/flares, but I'm now living life.
I hope you will feel so much better after you've completed it.
 
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I get confused too, I was diagnosed with crohns when I was 8, so roughly 15 years I have been dealing with this stuff. It's hard, and most definitely it is stressful. What kinda of things have you noticed make your symptoms worse? Also, (I don't mean to be invasive) but what hospital are you having your surgery at?
 
My surgery is at the university of Michigan and I can't eat fruit, veggies, popcorn, alcohol, seeds, nuts and bending over, picking up my daughter, exercising or even just to jump. All that hurts me, and right now I'm so bad I basically live off protein shakes. I'm the opposite of you though, I never go to the bathroom, I have to drink mirilax 2 times a day in order to go every 3 days!
 
Thank you Justanothercp! I have been really dreading the idea, but at the same time I'm excited and just want it to be over with!
 
Wow, haha that sounds like everything I live without also. I'm actually surprised how similar our symptoms are. My surgery is going to be at OHSU in Portland Oregon, I have heard they are the best in the state
 
I know it's crazy how alike but different we are, I've never had blood either and most people do. Actually mine really just looks like my intestines like to close up and not let anything by. Therefor I always hurt, I know there is way more to it but that's how I explain it to people. And yes UofM is the best in my state too, so at least we are on the right track!! I already met with a surgeon and she is amazing, I hope yours is as well. Even if it's not all going to be ok, she seemed very convincing;) it put me at ease a little!!
 

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