How do you know it's time for a resection?

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lgpcarter

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Jun 15, 2013
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Crohn's for 16 years now. I'm 36.

As you can see from my signature, I've done pretty all the drugs. Entyvio seems to be helping but still having issues.

Was hospitalized with a partial small bowel obstruction in June. At that point I switched from Stelara to Entyvio and of course ended up on the prednisone train. They said it was inflammation not scar tissue so surgeons I saw in the ER bounced me over to medical. Have been able to get off the prednisone but still having trouble. At least three episodes with some pretty severe pain and switching to liquid or no food for a few days. Last one was Wednesday and I was miserable enough to call GI. Have an appointment on Monday. Thinking about asking for surgical consult.

Reading through stories here, i'm thinking maybe I should try to suck it up and deal. On the other hand, I've tried all the drugs and been on Entyvio for six months. I'm in relatively good shape at the moment and am desperate to stay off prednisone.

I also have fistulas and a fair amount of perinatal disease so not sure they would just want to do a resection.

Any thoughts?
 
My first thought was don't suck it up. You could cause worse damage to your insides.I don't know what they would want to do about perinatal disease but I have had to have surgery for fistulas. Best to you.
 
I would say dont suck it up. Well, depends what for and how you mean to suck it up... So I had a flare, for like 5 yrs, and it destroyed the 2ft of my intestine from the ileum back. I had to have a major surgery, resection with partial removal of my blatter AND colon, due to the need to remove to internal fistulas from the small intestine to each of those organs, so 2 internal fistulas. I too also have perianal disease with 3 anal fistulas, freaking love this disease. So I would not suck it up for the stomach stuff, or you could end up with a horrible and complicated reaection like I did, although i healed up fine and quick. The only thing is i dont feel all better, even tho there are no signs of disease or inflammation, i feel like ****. Now with the anal fistulas, i might try to tough those out, bcuz for me, if I lose my ahole, and have to wear a bag, ****** forget about it. I just dont think i can take the depression and loneliness. Specially having to fully give up what i do... i would take up foing heroin or something to keep me sane. Just my .02. Some of the biologics can help fix fistulas, or so im told.... i have had like 5 or 6 fistulas in my life and 2 or 3 setons. I had my first abscess that became a fistula at 13, jesus, how embarrassing and horrible for a child in adolescence to have to endure all the way to his 20s. Anyway just my thoughts. Good luck to u, sound like me, as i just turned 37. Oh and i am on like 1 meal a day diet, cuz i hate wit food does to me. Sorry i ramble
 
I guess it all depends on how sure they are that it's inflammation, not scar tissue.

I had blockages on and off for about 10 years and when it came to the point of only being able to digest liquids for me the time had come. I was on 60mg of pred and it wasn't helping so in my mind it had to be scar tissue.
I still had to convince my GI that it really was time for surgery but once they got in there it was scar tissue for sure. They left some inflammation hoping that that could be dealt with with medication and took out all the strictures.
Surgery is now about 16 months ago and I'm having strictures again so surgery is not the solution long term either but at least I'm able to eat again!
For me the decision to go for surgery was made for 2 reasons, one to try to avoid emergency surgery which I thought was going to be inevitable and secondly because I just wanted to eat more than liquids. Like you I was fairly fit at the time and that also helped to make the decision easier. I recovered pretty quickly and had no post surgery issues like wound infection etc.

I would ask the GI if there is a realistic chance that your current situation can be improved with medication alone, I asked the same and mine said probably not. That made the decision easy.

HTH
 
Quality of life is an important consideration. If the disease is affecting the day to day quality of life, then I would consider surgery. I think in most cases it isn't a question if you will need surgery but when.
 
Thanks Everyone!

I've been in this flare for 3 + years now and I am tired. The obstructions are relatively new (first one in June and only one that had landed me in the hospital so far). I suspect my doctors are going to want me to wait longer for the Entyvio to fully kick in.

I also, even after all this time, still feel like a bit of a faker. Like I am making too much of this new symptom, and maybe it is just a "new normal" for me and I should get used to it. The four major episodes I've had since the hospitalization in June I have managed on my own (and three I know were my "fault" - pumpkin seeds, edamame and popcorn being the causes).

I hate this. I do this every time something is wrong. I probably left going to to hospital with the obstruction much later than I should have because I don't ever feel like my issue is serious enough to go. I dither and I hand wring and I underplay or live with symptoms that make me miserable. I also worry about rushing into surgery and losing too much bowel or ending up with an osmotic (something I am preparing myself for to happen someday, but I would prefer not to if possible.
 
I am assuming you have had mri ? They wanted to wait with me to see if humira or remicade would work but the disease had been present so long that my intestines were beyond repair. They didnt realize that my intestines were this bad until they actually went in to remove them during the resection. Just wanted to mention that waiting for medication isn't always a viable option, especially with flares lasting long like the one you are describing. My intestines were basically a bunch of scar tissue on top of scar tissue, layer upon layer.
What do you mean you feel like a faker? I have a hard time accepting that this disease is tuining my life, because i cannot see it, but i know feeling the way i do is not normal. I never feel rested and no matter much or little i sleep, i feel like i need more sleep. Im just too tired of this.
Best thing to do is go over all options with your gi and a surgeon that is referred by the gi. Thats what i did, and he specialized in colorectal surgery, specifically crohn's disease. So he was able to give me alot of %'s about future surgeries and the need for example an ostomy if my fistulas arent able to be healed by the humira, etc.
If you keep downlplaying and waiting til the last minute to do things, you could be in worse shape than you might like. Also ask about a colonoscopy or endoscopy if you havent had them yet.

Take care
 
For me, I waited too long. Who wants to opt for surgery!
But it became a quality of life issue, I was suffering... my marriage and job were suffering.
I wish I would have done it sooner.
 
No offense but you might make things worse. I remember my surgeon telling me after my resection that my body had been like that for a while.
 
My surgeon, like i said specializes in colorectal surgery, told me my case was impressive, kinda like dude we dont see many cases as bad as yours. He also told me that he got all the resident surgeons to come show them my organs and the like because its not every day you get something that is so valuable from a real life clinical aspect. I was def suffering. And i feel like i still am.
 
BigBoss said:
My surgeon, like i said specializes in colorectal surgery, told me my case was impressive, kinda like dude we dont see many cases as bad as yours. He also told me that he got all the resident surgeons to come show them my organs and the like because its not every day you get something that is so valuable from a real life clinical aspect. I was def suffering. And i feel like i still am.
Click to expand...
What is your doctor saying?
 
I was just trying to make the point that by waiting to have surgery, you might really be damaging your insides. My gi doctor referred me to the surgeon i had do my resection, he was amazing by the way. Just that they can only dee so much woth imaging and such, they had a good idea as to how bad my insides were, but it wasnt until they cut me open and started removing ****, that they actually were able to see the extent to which my intestines had been damaged.
Im not sure i follow what your asking, regarding what my doctor said?
 
About suffering? Haha, they say to wait and see if humira works, it could take up to 6 months to find out it is ir isnt working... when i take my humira, i get what feels like more aggravated pain at the surgery site? Sharp pains in lower right and lower left stomach. Shooting pains, nausea, lack of appetite, crohn's symptoms in a nutshell.
 
I was hoping that if they take me off Stelara that they would switch me to Humira but I don't think I am coordinated enough to give myself the shots.
 
ronroush7 said:
I was hoping that if they take me off Stelara that they would switch me to Humira but I don't think I am coordinated enough to give myself the shots.
Click to expand...

I am a klutz and I had no issue with the humira in my thigh. Did my Stelara injections in my belly, and that was okay too. I agree, it did sting like a bitch! Preferred the Stelara needles over the auto injector Humira any day!
 
BigBoss said:
I was just trying to make the point that by waiting to have surgery, you might really be damaging your insides. My gi doctor referred me to the surgeon i had do my resection, he was amazing by the way. Just that they can only dee so much woth imaging and such, they had a good idea as to how bad my insides were, but it wasnt until they cut me open and started removing ****, that they actually were able to see the extent to which my intestines had been damaged.
Im not sure i follow what your asking, regarding what my doctor said?
Click to expand...

Thanks. That is a good point. I have an appointment today, so will see what they say. I am going to ask for a referral to a surgeon. We have two here in town who specialize in CR.
 
BigBoss said:
What do you mean you feel like a faker? I have a hard time accepting that this disease is tuining my life, because i cannot see it, but i know feeling the way i do is not normal. I never feel rested and no matter much or little i sleep, i feel like i need more sleep. Im just too tired of this.
Best thing to do is go over all options with your gi and a surgeon that is referred by the gi. Thats what i did, and he specialized in colorectal surgery, specifically crohn's disease. So he was able to give me alot of %'s about future surgeries and the need for example an ostomy if my fistulas arent able to be healed by the humira, etc.
If you keep downlplaying and waiting til the last minute to do things, you could be in worse shape than you might like. Also ask about a colonoscopy or endoscopy if you havent had them yet.

Take care
Click to expand...

I had a bunch of tests done in late Spring/early summer when I was hospitalized for the obstruction - MRI, sigmoidoscopy, CT and CT enterography.

My fistulas are better than they have been in a while, thought still taking Cipro and Flagyl to keep them happy.

I guess faker is the wrong word to use. Maybe a complainer? How much do I need to suck it and deal with or should I keep pushing for a better quality of life? Which is really not that bad. I work full-time, I can mostly do the stuff I want to do.

Actually feeling pretty good today, after calling and moaning to my GI's secretary when I was feeling terrible last week and getting an appointment for today.
 
Thanks again, guys. It really helps to have people that understand. My husband listens and is great but doesn't really get it.

GI agreed it was time for a referral to the CR surgeons. So now I wait for that. A few months, likely. Will get them to advise on fistulas as well.
 

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