Really confused about surgery

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scl

Joined
Jul 12, 2011
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I am a Crohn's anomaly. I've suffered from chronic diarrhea for 30 years and in July was admitted to the hospital with an intestinal blockage and fistula. Diagnosed with Crohn's. Started on Remicade.

I've never had daily pain and still don't, but I have had several episodes of blockage with the accompanying severe pain. It lasts from 6-10 hours and I have not been back to the ER (because of the fear of the dreaded NG tube). CT scans show the stricture is very narrow (diameter of a straw, the doctor said) and about 10 inches long. The fistula (between ileum and distal colon) is questionable and I will have a colonoscopy in the next few days to view the area.

I traveled from Hawaii to Seattle to get a consult from a reputable Digestive Disease Center. Both the GI and surgeon recommend surgery to remove about a foot of bowel and repair the fistula. It is a hard decision to make because other than the rare night of intense pain, I feel great and always have. I can do anything I want with no ill effects including running, tennis, hiking, etc. I have always eaten a healthy diet, and recently stuck religiously to the Specific Carbohydrate Diet. I've always had tons of energy.

Is a bowel resection worth it? Am I risking feeling worse on a daily basic to eliminate the occasional blockage pain?

All these questions surfaced after I left the doctor's office. Unfortunately, he is leaving town and won't be back until the day of my surgery which I plan on having here in Seattle.

Comments or advice?
 
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If the stricture is that narrow, it sounds like it is probably past the point of being treatable. I, personally, would go for the surgery if I were in your position. I had a stricture about that narrow over a year ago and surgery changed my life around. Surgery made my life better, in zero ways did it make it worse. If your docs are recommending it and your stricture is that narrow, I wouldn't turn it down. It could become worse until you stop eating altogether due to the pain when the food reaches that area. I lost 20 pounds this way. Again, everything got better post surgery. Just my thoughts :) good luck on your decision! I know it's tough!
 
I go in this monday for my second resection in less than 2 years. im 25 years old and can tell you that stricture will never go away and will eventually have to be removed! I have constant pain from my stricture now and have no options other than surgery! Scar tissue doesnt go away, it will surgery! You will be sore for a few weeks after but the hospital stay is the worst of it. Believe me, I have about had it with this disease and will be on a very strict and healthy diet after this in hopes that it will help. Just know that the pain will get worse and more often, but it is your decision on what you can handle day to day.
 
Hey scl,

I think surgery is going to be inevitable for you at some point and to have that surgery under controlled conditions is far better than risking it being an emergency where you have next to no control. Ultimately leaving will it at some point lead to full obstruction and the risk of rupturing your bowel.

The one long term side effect that I was going to mention was that you may suffer with chronic diarrhoea but I see that is something you have been dealing with for a very long time.

Both of my children have had resections with very good outcomes. They are both living life to full and are full of beans! My daughter has been in remission for 5 years and my son is in remission following his surgery in April this year. My daughter had chronic diarrhoea following her surgery but she has been able to control very well with psyllium husks, she now only goes once a day when she uses them.

Good luck! and let us know if you have any further questions.

Dusty. :)
 
I agree with all above. I have had two resections and the first one gave me many years of relief. Whenever I go to ER they have tried in the past to give me the NG tube and twice I said no, I am suffering enough, they can't make you do it. Unless you pass out, which I never do. There are so many things that could go wrong and avoiding it doesnt make it go away...that is what lead to my second resection. Bowel obstructions are my biggest fear!
 
sci, I agree with everything said above. You dont want to wait until you bowel perforates-its putting your life @ risk. Controlled surgery is far better than all the dramas of a full blown emergency.
Ref NG tube I've actually asked for them when I've obstructed & by having a small drink of water when the tube goes down my throat I'm able to get the tube down easily.
Rgds
Grant
 
scl, I also agree with everyone and my biggest fear is a bowel obstruction.

I had surgery in Feb. and I was also very worried about the NG tube, but I didn't get one. So, I think there is a good possibility you won't have one.....Good luck with your surgery!!

Linda :hug:
 
The dr. said they will probably take out about a foot, of my terminal ileum. He also thinks they should be able to save the ileocecal valve. If so, that would be great!!

Thanks for asking.......:)
 
Hi Linda,
My doc will take out about a foot of the terminal ileum too! Don't know about the valve. Does that make a big difference?

I had a last minute colonscopy late yesterday since my first and only one was done without prep while hospitalized with a blockage. They wanted to determine whether my colon had any signs of disease. It was clean. Two bowel preps in three days isn't my idea of fun, but it wasn't as bad as I expected.

I am fairly thin normally (5'8" and 125 pounds). And I feel like I have already lost weight prior to surgery. I do not want to look skeletal after surgery. I dropped 10 pounds during my 5 day hospital stay in the hospital in July. No one understands this fear and I get criticized if I mention it. Guess I need to keep it to myself.
 
I am fairly thin normally (5'8" and 125 pounds). And I feel like I have already lost weight prior to surgery. I do not want to look skeletal after surgery. I dropped 10 pounds during my 5 day hospital stay in the hospital in July. No one understands this fear and I get criticized if I mention it. Guess I need to keep it to myself.
Click to expand...

I wonder if you are able to take some measures post op to control your diarrhoea if you will be able to better manage your weight? Perhaps you won't ever carry much weight but what you do gain will stay on?

Unfortunately both of my children looked skeletal following surgery. My daughter was in a very poor condition going in for hers, emergency, so she probably isn't the best example but my son had planned surgery and in the 6 months post op he has gained 15 kilos and he is now maintaining that weight.

Good luck! I will be thinking about you both...:goodluck:

Dusty. xxx
 
Good luck to both of you having surgery tomo, I had the same surgery this time last year I also felt good pre surgery and often wondered was I doing the right thing but was told it was beyond repair so no choice. Good luck and keep us posted
 
Surgery went well, but pain control did not. Not sure they performed surgery or ran over my abdomen with a truck.
The bowel resection was straightforward but repairing the fistula was hard to get to and tricky. Surgeon also checked every inch of bowel. No other disease was found..
Yesterday they removed the epidural once they determined it wasn't working, my catheter, and oxygen.

I started walking Friday.
 
I'm sorry to hear about the pain control issues you have had. :(

Good to hear the surgery went well though! I hope your recovery continues to be uneventful from now on and you are soon home...:goodluck:

Dusty. xxx
 
All tubes removed today. IV is still in but not connected to anything. Off narcotics because they seemed to make symptoms worse. Feeling better. Sitting is still hellish.
Anyone hear back from Lseibert?
 
scl said:
All tubes removed today. IV is still in but not connected to anything. Off narcotics because they seemed to make symptoms worse. Feeling better. Sitting is still hellish.
Anyone hear back from Lseibert?
Click to expand...

I didn't take my computer to the hospital. Thanks for the message and for everyone else, I'm doing well and I came home yesterday just in time for Thanksgiving.

The surgeon decided, then he got in there, not to take out any of the bowel and gave me another strictureplasty of the diseased area. And I found out after the surgery there was a mass they needed to look at, but no cancer. I guess they really wanted to leave my valve.

Dr. also said I have to get a colonoscopy in 3 weeks to check and see if everything is "working right". Does anyone have any idea what this means??

Have a great day everyone.........:thumleft:
 
Hi Linda!

Soooooooo good to hear that all went well and you are home! YAY!

To me the colonscopy sounds like it is check that the strictureplasty did what it was supposed to do???

So happy to see you back...:panda::panda::panda:
Dusty. xxxxxxxx
 
Hi scl - glad everything went okay, and hope the pain is subsiding by now. I hope the recovery goes easily and you are feeling even better than you did before, with no fear of obstructions!!!

Good luck, get plenty of rest, and don't worry about what others say about your fear of being too thin. WE understand! Most of us have been in that skeletal state and while non-Crohnies might think it's an envious position to be so thin, we understand that fear of being too thin and not getting enough nutrition. Hang in there!!

- Amy
 
It's really good that they left your valve. I had two and a half feet of my terminal ileum removed and a foot of colon with the valve and I have a new set of problems in addition to Crohn's. I have constant diarrhea and take Welchol to control the fact that I can't absorb bile acid any more. I will have to take this for the rest of my life, but it's a lot better than the first medicine they had me on which was a nasty orange powder that I had to drink called Questran. Also, the valve stops the bad bacteria from your colon from flushing back into your small bowel, so it's much better to have the valve intact.

I'm glad you both made it through your surgeries well!!
 
ameslouise said:
Hi scl - glad everything went okay, and hope the pain is subsiding by now. I hope the recovery goes easily and you are feeling even better than you did before, with no fear of obstructions!!!

Good luck, get plenty of rest, and don't worry about what others say about your fear of being too thin. WE understand! Most of us have been in that skeletal state and while non-Crohnies might think it's an envious position to be so thin, we understand that fear of being too thin and not getting enough nutrition. Hang in there!!

- Amy
Click to expand...

Well I haven't lost as much weight as I expected. When diagnosed in July, I weighed 134 and never gave much thought to what I weighed. This morning I dipped into the teens-119. I hate thinking about it and don't like how thin I have become. It has made me look older. I know as I heal I will look better, feel stronger, and put back the lost weight, but I am impatient!

Thanks for your understanding. I am kind of hurt that friends and family don't recognize that keeping weight on is a problem for me right now.
 

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