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Fistula surgery, intestinal surgery in my future

Just went to the doctor today. Great news. The Humira is not working. Have fistulas on top of that. Going tomorrow for blood work. Going Friday for a CT SCAN. GI DOCTOR is leaning on surgery for all my problems. Any insight? Anything I need to be worried about.

Current meds:
Humira injections every 14 days
Pentasa 4000mg a day
Prednisone 40mg a day.
Nexium 40mg a day
Cant remember the rest right now. Brain is fried after going to doctor.
 
First surgery for fistula and bowels. Had my gallbladder removed in November due to crohn's giving me stones. "Didn't mean to rhyme". My GI really didn't go into detail about anything. So thats why I feel left out on a limb here. Give me paperwork on what t expect for my fistula surgery. Told me we will talk about the other after the CT SCAN.

Guess the thought of having some of my intestine cut out is kinda weird for me. I work offshore as a mechanic, will i get back to 100% to do the heavy lifting needed to do my job? Also the fistula surgery, if they are cutting spots open in my bum, how does that effect my BM's and walking and for how long?
 

theOcean

Moderator
Is the Humira just not helping the fistula, or is it outright ineffective/you have antibodies? I found before fistula surgery, nothing was helping me get into remission. Afterwards, biologics helped a lot more.

For the fistula, it depends on where it's located. Usually an incision is made, and the fistula is drained and a seton is inserted to keep it open. The seton is usually surgical string/tubing, and having it in place allows the wound to drain properly. It's not as obtrusive as it sounds, I promise. I don't even notice mine. Sometimes it's left in indefinitely; other times, it can be removed. It really depends on the complexity of the fistula, and how you're healing.

For after the surgery, you usually just need to keep gauze over the area to collect drainage (until that stops; biologics are fantastic for stopping drainage), and just make sure the area is kept clean. A lot of us take frequent sitz baths to help that, and I really recommend it. I was also sent to wound care for the first few months, until they felt I was fine and didn't need any extra help.

After my last fistula surgery, I was only really out of commission for a few weeks, and then I was back to walking normally and comfortably. Sitting will be very uncomfortable at first, but I found within a week I was all right to sit again. It really varies for everyone. BMs I don't feel were affected for me, but I think it depends on the kind of fistula you have. You will probably need at least two weeks time off from work, but that's just been my experience.

Beyond that, regaining strength just takes time. Just make sure to move when you can to prevent your muscles from deteriorating.

As for the resection, I've only just seen one of my friends go through that, and haven't had any experience with it myself. Hopefully someone else can tell you how long recovery from that might take.
 
Nothing is helping. My doctor wants me to stay on all my current meds except to start the taper of the prednisone. Just waiting on the CT SCAN results and get a date set. For the time being I will stay on the humira injections and pentasa for maintenance.

Im not to worried about the fistula surgery pain as I already feel like im setting on razors. I guess just the thought of having my guts cut and re-stiched back together.

I work offshore so I have to be 100% before they would let me go back. I find it hard to think with all the meds and having some of my guts removed, that any one could consider me anywhere near 100%. And also with the time I have missed already with the always possible re-infection. I also cant eat how I need to due to, its offshore and you cant just go the the store when you want.

Thanks for the info
 
I guess just the thought of having my guts cut and re-stiched back together.
I know it's not a nice thing to think about - having guts removed - but you may be surprised by how well your body can cope with it. People have a lot of intestine, so quite a lot can be removed and the digestive system will still function. I've had all of my large intestine and a small amount of my small intestine removed, and my digestive system still functions. Your intestine will heal when they stitch it back together.

You should be able to go back to work. A resection shouldn't impact on what you can do physically in the long term. You just need to be careful in the first couple of months following surgery, don't try and do too much too soon. You'll gradually be able to increase your physical activity during that time, but avoid doing anything very strenuous and don't lift anything heavy in those first couple of months. But once you are recovered, if all goes well you should be able to return to your normal life. You'll be 100%, just minus some surplus intestine.

Have you discussed your worries with your surgeon? Your surgeon should be able to give you more specific advice about the time frame for your recovery.

What sort of diet is best for you, and what kinds of foods are suitable for when you're working? If you post about it in the Diet forum of this site, people may have suggestions about how to manage your dietary needs.
 
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