Having Extensive Surgery

[marby]

Hello everyone, I am new to this site. Yet I am quite experienced in surgical attempts to remedy my complications from crohn's. I have had 9 fistulectomys while being knocked out, and many others in office by my colorectal surgeon. I had a colostomy procedure just over a year ago. I still have a horrible time with the ostomy.

I have had crohn's for many years. I have taken apriso, asacol, prednisone, entocort, and others I cant recall.
I have had infusions of humira, cimzia, remicade, and currently entyvio. I had severe allergic reactions to all of the biologics except entyvio, which I have been on for 5 months, with no noticeable improvement.

I have been on the oral antibiotics levoflaxin, augmentin, amoxicillin, ciproflaxin, flagyl, and maybe others I cant recall.

I have chronic pain from an infection in the coccyx. This is due to the drainage from the fistula tracts. I have had a pic line on 3 separate occasions, with daily invanz treatments. This would help for a couple of weeks. Then level out, and eventually get worse again.

This past week I met with my team of doctors (G.I.'s/I.D/C.R. Surgeon). On March 3rd I will be having major surgeries. They will remove my colon, below where my bag is now. Then my coccyx will be removed. Then my rectum, and anus. Then totally removing my butt cheeks. Then they will do plastic surgeries to rebuild my rear end, using skin from somewhere on my body.

I am terrified of these procedures. Worst of all is that I have searched everywhere for information on these surgeries. I cant seem to find anything, anywhere, about removing my fistulized, heavily scarred, very skinny rear end cheeks. My surgeon told me its not a common procedure. I cant seem to find testimonials anywhere, Im hoping to find someone here, that may have some insight for me.

All of this will be done(except for all the plastic surgery) during a lengthy stay in the hospital starting in early March.

I of course have bugged my surgeon about everything. He is a great man, and has given me so much helpful information. Yet I would really like to here from someone who has experienced this first hand.

At home, I play the "Tough Guy" for my family, but I am scared as hell. I have been warned that it will be extremely uncomfortable, and unbearably painful, for quite some time. Anyone with any insight, or experience with this. That can spare some time sharing with me, would be very helpful.

Thank you for taking the time to read my rant. I hope to hear from someone. I hope no one else here has ever had to experience this, but if you have, please share whatever you can with me.

 

[ronroush7]

There is a particular section in this forum entitled Surgery and I think you might have better chance of finding help there. I am do sorry for what you are going through and you have my prayers and support.

 

[marby]

There is a particular section in this forum entitled Surgery and I think you might have better chance of finding help there. I am do sorry for what you are going through and you have my prayers and support.

Thank you, I thought I was there?
Where should I go to? Do you have a link? I am confused.

 

[fuzzy butterfly]

Hi marby you are on the your story site..
I am so sorry you are going through all this hun. I'm sorry I haven't had any the problems you have, and can't offer advice there.
I just wanted to offer you support and hope that things work out for you well. You are one tough cookie dealing with all that.. I hope that someone here can help you with this, as you say the doctor was helpful but there is nothing like actual experience of it.
Sending you love and hugs and please let us know how you get on..

Ps I have asked for your post to be moved to the surgery thread, where you may get an answer. :heart:

 

[marby]

Update: I met with my plastic surgeon today. He explained his role to me, in detail. After my Coccyx, and the "meat" on my backside are removed. He will then cut out the side of my belly, opposite of the ostomy . This will include the complete muscle underneath. Then drag it down through my insides. Then place it into the huge hole in my rear, and sew it up. He will then put some sort of mesh into the gap in my belly. Then place, and grow skin on, and around that area. He said he will give me a epidural shot to help relieve the pain. He said narctoic painkillers will negatively effect the healing process, and of course, NSAID's, aren't crohn's friendly. My problem with this procedure is that I will permanently lose the muscle on the right side of my stomach. Which will make my strong side, the one with my stoma. Rendering me unsuitable for my line of work. I will be on temporary disability, but need to find a new career. This way I wont find myself completely useless, like I feel now. I will keep you updated, as I learn more. Depression is hitting me hard. I am so lucky to have a great wife, and 2 awesome kids, to keep my spirits up. They keep me going, along with the few good friends I have. I wish you all the best of luck with what you're going through. Stay strong, love life, and the ones closest to you.

 

[ronroush7]

Sending support.

 

[fuzzy butterfly]

Hi Marby oh that sounds a big op. It is amazing what can be done these days. I hope all goes well with a quick recovery. Best wishes n please let us know how you get on..

 

[Jennifer]

Good luck with your surgery marby. I hope everything goes well and that you heal quickly. Hope you're able to sort out work as well but I wonder if maybe applying for permanent disability with SSI and SSDI now (since it takes a long time to get approved) might be beneficial just in case you aren't able to find anything for a while or if maybe you need more recovery time and a break from any work. You can always go back to work later on and get off of government assistance when you feel more capable. Gook luck!

 

[sam357]

Gosh that sounds like tough surgery.

I had my rectum removed a year ago and was so nervous beforehand, but the surgery went well and the pain was nowhere near as bad as I thought it was going to be.

I wish you a speedy recovery. One thing that got me through was knowing that things can only get better and they did so keep positive!!