Fears and advice?

[Scijim]

fears and advice?

I am having my third crohns surgery of my life. The last one was 30 years ago and all the memories are coming back. They are going to try to do a coloanal resection with a temporary illiostomy I guess what scares me most is not knowing whether the ostomy will be permanent or temporary until I awake after the surgery because the surgeon doesn't know what he will encounter until he opens me up.

In terms of planning for the surgery, he is waiting fir my decision on what he should do if he finds that he can't do the surgery we have planned and has to do a permanent illiostomy.

Anyone who has gone through this uncertainty please let me know how you dealt with it. I think that for those of us who have dealt with the disease for a long time don't need advice, as we are the best judge of our symptoms and when we need to take action.

Rather, and what I need, is some understanding from people who have shared these experiences

Hope to hear from anyone

Jim

 

[Crohn's 35]

HI Jim :bigwave: so sorry you are having to have this type of surgery done, but there are many who have and have said it was a God sent. They are living a better and happier life. Any kind of surgery is scary and I think for a man it could be harder. All I know from others here is that if I have my 3rd surgery, I may opt for one, so sick of being ill up and down. So many hear to help you. When is your surgery date? Keep us posted ok. We are here for ya! :hang:

 

[dxw]

I think you will find the experience much improved since your last experience. 30 years is a long time in medicine, I've found even after 5 years or so that the anaesthetic was easier, wound was better and pain management had improved. I can relate to your concerns about the surgery and whether it will be reversed, I went through the same thing. Mine was reversed but I didn't really believe it until after the reversal. Not sure about advice on how to cope, I think I use denial and "one day at a time", probably not the best coping mechanisms but they seem to work for me. I'm sure it will go well, best of luck.

 

[ameslouise]

Hi Jim - I agree with DXW - you will probably find a different experience this time around. However, obviously you are 30 years older so your recovery time might be a bit longer than it would have 30 years ago!

I can't imagine the uncertainty you are going thru! Not knowing what you are going to wake up with would be very nervewracking.

If you poke around the stoma subforum, you can read about the experiences of lots of ostamtes (myself included) that are nothing short of ecstatic since getting our bags and living a life infinitely better than before. There are always pros and cons to any decision and it's a tough one to make. For many of us, there was no choice but to get the ostomy so it was out of our hands.

Just ask away, here or in the stoma section, and we'll be happy to share our experiences.

Good luck! - Amy

 

[Scijim]

November 15

Thank you all for your support. My surgery is scheduled for November 14th. If all goes well I should be back in Miami for thanksgiving. However, suppose I may not be on a regular diet.

I have been relatively asymptotic for 30years. I had a stricture that had to be dilated every few years but it has gotten to a point where the dilation didn't work and I have been feeling miserable for the last few months. The doctors are also fearful of cancer developing at the site of the stricture. Surgery is scheduled for November 15. Up till now I have been very lucky

Can you tell me what I can expect the first few months with an illiostomy. My family (brothers, sisters, nephews and nieces) are going on a carribean cruise and want me to join them for 10 days beginning December 23.

Any concern about going?

Thanks again to all of you

Jim

 

[Scijim]

I think you will find the experience much improved since your last experience. 30 years is a long time in medicine, I've found even after 5 years or so that the anaesthetic was easier, wound was better and pain management had improved. I can relate to your concerns about the surgery and whether it will be reversed, I went through the same thing. Mine was reversed but I didn't really believe it until after the reversal. Not sure about advice on how to cope, I think I use denial and "one day at a time", probably not the best coping mechanisms but they seem to work for me. I'm sure it will go well, best of luck.

Dxw. I think the one day at a time approach is a good one. I won't freak until the day before the surgery. That day I will be almost silent. I wont be good company, thats for sure

Thanks again

 

[tiloah]

Good luck, I hope it goes well for you. I will be thinking of you.

 

[Nyx]

Thank you all for your support. My surgery is scheduled for November 14th. If all goes well I should be back in Miami for thanksgiving. However, suppose I may not be on a regular diet.

I have been relatively asymptotic for 30years. I had a stricture that had to be dilated every few years but it has gotten to a point where the dilation didn't work and I have been feeling miserable for the last few months. The doctors are also fearful of cancer developing at the site of the stricture. Surgery is scheduled for November 15. Up till now I have been very lucky

Can you tell me what I can expect the first few months with an illiostomy. My family (brothers, sisters, nephews and nieces) are going on a carribean cruise and want me to join them for 10 days beginning December 23.

Any concern about going?

Thanks again to all of you



Jim

Depending on if you have laproscopic or open surgery will make a big difference in your recovery time. I have a bag and it took me a good 3 months to feel up to going out and feeling confident about it. Mind you, I had open surgery and complications to boot, so my recovery was not typical. I just felt very weak for about 6 - 8 weeks. So, if you have your appliance set up (meaning you're using the right one for you and are not experiencing too many leaks), your wounds are healing nicely, and you feel relatively normal, I'd say go. It's just too hard to predict. Sorry this hasn't been more helpful...I wish I could see in the crystal ball for you!!

Good luck with your surgery...it's really not that bad having a bag. It certainly gave me my life back.