Next Steps...

[HARVinTX]

I didn't know how to title my thread. Nor did I know who to reach out too. I saw my GI today and he had refer me to surgery. I knew it was coming. After 23 years with Crohns you know it's coming. But I'm not sure that make it any easier. It's only going to be my 2nd surgery but the 1st one was really tough. I was so sure I couldn't go through it again. I was 37 then and now at almost 49 I know I can do it...and I must...but it is a huge burden. I would write more but my tears and my emotional weakness tell me it's enough.

 

[Daisy123]

I have had seven resections, my most recent one 3 years ago. Surgery these days is so much better, I was an the enhanced recovery programme and home within a week. It is hard, but think how much better you will feel. The sooner you have the op, the better.

 

[nogutsnoglory]

I'm sorry that you will have to undergo surgery. What kind will you need? Is it the pain that scares you most? You should ask to be placed on a pain pump or epidural.

 

[HARVinTX]

Thanks Daisy and Noguts. I do hope it goes more smoothly this go around. It's not the pain that concerns me. It's that awful feeling the day of the surgery when they get you out of bed. It's also the concern over a bag. Although I don't think I would have a permanent one this go around, even a temporary one would be difficult to manage since I travel for work. I will need to have the lower half of my ileum removed due to severe stricturing. Since my last obstruction SEP2012, I have been on 3 biologics: Cimzia (didn't help); Remicade (helped but I developed antibodies and had 2 reactions); Humira (currently on and it helps but my stricture appears to be too severe now for anything to work but my doc said I can go back on it after surgery).

Anyone have experience with lower half ileum removal (will likely include my iliocecal valve)?

 

[Daisy123]

I haven't had the removal of half my ileum, but have had most of my colon removed, so not sure what it would be like. If you have an epidural, then being unceremoniously dumped out of bed the first day should be relatively painless. I choose PCA instead because I have a fear of paralysis, but I think the epidural may be the way to go for you. In regards the stoma, I had a temporary one for about a year when I was younger. I didn't work during that period but I had a series of three ops that year. Next up for me is an ileostomy but I can't quite bite the bullet. Check out the stoma support group here, people will be able to answer queries with stomas better than me.

 

[Susan2]

I had the last third of the ileum, plus everything from there on, removed, so have a permanent ileostomy. That was done in 2000 when I was 57. I must say that, although I was really, really reluctant to have that major operation (I would burst into tears every time that I thought about it) and put it off for far too long, I have been so much better since.

Once you have the hang of managing it and have found the bag that suits you, you should find it easier to do the travelling for work than you do now. I can do far more now than I was ever able to do before the op - I've been snorkelling in the Galapagos and on safari in Africa!

As Daisy said, go over to the Stoma Sub-Forum (under Surgery). People there will be more than happy to answer your questions and share their experiences.:ghug:

 

[Grumbletum]

Hey, Harv, sorry too to hear that you are needing another surgery. I only had a day's notice for my resection which was good in some ways - less time to worry about it. I thought I was fine about it until they wheeled me down to the theatre waiting area where I promptly burst into tears and was in floods when the surgeon popped in to see me before the op.
I had about 30cm of small bowel removed, my caecum and ileocaecal valve because of a fistula and severe inflammation in the TI. 53 at the time of the op and yes, I think it did take me a bit longer to recover thinking back on non-Crohns related op I had 25 years prior to the resection.
But within days of the op, I could tell that a lot of my Crohn's symptoms had gone and a year and a half on, I am still enjoying the new lease of life it has given me.
Try not to worry too much, Harv. Get plenty of rest if you can and spoil yourself in the run up to the surgery. I hope it all goes well for you.