• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Had my surgery

Well I had my surgery May 18th. The initial surgery wasn't as bad as I thought it would be. I have a three inch inciscion from my belly button out to the right side. They removed about 12 inches of my terminal illium, my appendix and a couple of inches of my large bowel. Until now they couldn't give me a absolute diagnosis of cd because they couldn't get into my small bowel because the stricture was too small for the scope and couldn't get a biopsy. When my gi came to see me in the hospital he said well you have cd, I hope you know. Well we kinda guessed that...duh. But anyway was in the hospital for only three days without much pain and no bag, surgery was laproscopic. I did have a pain pump inserted into my gut which i think was a life saver for the pain. Came home for one day and had to go back with a terrible infection at the inciscion sight. They had to reopen it and stayed in the hospital for five days. Came home for a week I think this time had to go back for another infection for another five days. They didn't reopen it this time but put hot compresses on it to pull out the infection which worked it opened on its own. However now i have a pic line in my arm and have to give my self slow push IV antibiotics everyday now for six weeks. It has been over a month and still having pain but think it may be due to the infection??? Don't know what normal recovery time is supposed to be as this was my first surgery. There were three fistula's in the part they removed. I am enjoying eating all the stuff I couldn't eat before like granny smith apples, salad steak and POPCORN!!! However I do have diareah everyday now which I didn't have before (I was very fortunate) I am thinking the diareah may be due to all the antibiotics. I feel as though my four walls are closing in on me day by day and wondering if I will ever feel normal again. I am tired of being sick all the time. Uggghhh.
 
I had the same surgery as you and it took me almost 2 months for the surgery pain to go away fully. And I also had diarrhea for a bit even though I was eating a lot of normal food. It should go away soon but I am not sure about those infections, they could complicate things.
 
WOW Dusty!! Youve been thru too much, and I am so sorry to hear of your state. I will keep you in my thoughts and prayers, hoping you get to feeling better soon. Hang in there!!
 

Entchen

Chief Dandelion Picker
What a long process, Dusty. I think it takes a special person to be able to see the benefits (although steak is a pretty good benefit!) when the drawbacks are still so evident. Keep on feeling better and better.
 
Hey Dusty, I do suffer from the D atm after my surgery, although it doesn't seem to be getting me down as it is you, so perhaps you have it worse than me and also like you I never had to worry about it till now. I have heard time and time again over this forum that you've had surgery on your bowels and it takes time for them to get back to something normal, i'm sure there are more experienced people on here that might be able to give you some tips on food or something that could help. Hope you feel better soon :)
 
Thanks everyone for the input and encouragement. hoping all will be better soon. just want to feel better than i did pre op...isn't that the point?
 

Nyx

Moderator
I didn't have the same surgery as you, but it took a good three months before I felt completely normal (as normal as one can feel with a bag....lol). I also had problems with infections, but I was still in the hospital at the time so they took care of it for me (with a picc line too...aren't they great??? I loved mine). I'm sure you'll get back to feeling better in no time. One day at a time....
 

DustyKat

Super Moderator
Woops, looks like I've stolen part of your signature!

Roo had the same surgery 4 years ago with a bit more terminal ileum removed and in her case she has been left with short bowel syndrome. Roo was in very poor condition pre surgery so I wasn't looking at anything under 6 months as benchmark to her being back to "normal".

As to the diarrhoea, I'm sure Questran would do the trick for her but she finds it too unpalatable so prefers to plan her eating around her day. Might be worth a try for you though?

Dusty.
 
Last edited:
Hi Dusty,

Sorry to hear you are going through such a rough time. Sounds like your infections are making things alot more difficult. I was bit by a dog and had an infection in my hand and they marked the red line moving up my vein with a marker. Sent me home after IV antibiotics and told me if it moves beyond the line to go back to emerg. I woke up the next morning and it was up to my bicep! I think they worry about it reaching your lymph nodes because they kept feeling under my armpit asking if it hurt and I kept telling them it was my fingers that were bit!! Anyhow, as far as the diarreah, I remember having it with the anti-biotics and it made me nautious and wiped me out - no energy at all... It is amazing how much havoc an infection can be as it took a long time to get rid of it. I came out with a cast on my arm..lol..(for my finger!) I thiink the theory was to not move it and to keep it above my heart. All I can say was the infection caused me a lot of pain and just a general feeling of feeling like crap. I hope the picc line will help and you can get rid of it that way. I am glad you are enjoying eating foods :) You seem to have a positive energy considering your situation! I think this would make anyone wonder if it will ever be back to normal again.
You are in my thoughts and I hope you get well soon. Have some nuts for me okay :)
Please keep us updated!

Wendy
 
Dustydshook, I too recently had same surgery (march 10) and I too am not feeling 100% yet. I am SO fed up and am getting quite depressed about it! Saw my gastro Dr on Friday and he assured me I'm not having a flare up, but he DOUBLED my dose of azathioprine and said 'wait and see what happens.' Hmmmmm helpful? Not really!! Now my joints are aching, especially my fingers and wrists, and I feel seriously tired. After the surgery I had about 4 weeks where I felt GREAT, I then got a virus and went downhill from there and just haven't felt great since. So frustrating. I just don't seem to see the light at the end of the tunnel.
 
I can't say that I am loving the pic line as I am alergic to the tape so my skin is itchy irritated and has scabs all over it. The home health care nurse is looking into getting a different kind for me.
 
Top