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Extreme Surgical Anxiety for Pouchopexy Part 2/Ileostomy


Wed, January 08, 2020 6:18 PM

In two weeks I will be having my second pouchopexy -- or the repairing of my J-pouch -- as well as a temporary ileostomy to try and make the jpouch scar in place this time.

I'm only 31 and this is my sixth or seventh surgery. I have a 2-yr old boy that I usually take care of full-time. My colorectal surgeon is the top of his field in Boston and has been practicing for 20 years and I am only the third case he's ever seen of this.

When I had the majority of my surgeries in my early twenties, it seemed easier to take the surgeries in stride. But as I get older the anxiety leading up to the surgery, the intense fear of the intense pain I know I will feel when I wake up from anesthesia. 

Everyone around me understand all these feelings of anger and fear and rage, because they are all legitimate. But it is so exquisitely painful to try to keep living each day when it feels like the world is going to end in 2 weeks.

Thanks for reading

FPO cpeters4773
Joined Jul 27, 2010

Fri, February 14, 2020 2:56 PM

Reply posted for cpeters4773.

I am so sorry to hear you are in such a state of anxiety and yet another complication.  I completely understand having had 8 surgeries in the past 6 years myself.  I am now on my way from my ileostomy (which is all of a sudden leaking as it is now too close to the skin) to a colostomy.  I'm terrified not to mention a little angry (again) and am also somehow still hopeful.

You are never alone,
I am thinking of you and am sure you will rock this just as you have all the others. xo

FPO TBC1969
Joined Feb 14, 2020

Mon, January 20, 2020 8:33 PM

Reply posted for cpeters4773.

My heart goes out to you

FPO Dantethewolf47
Joined Jan 20, 2020

Sun, January 12, 2020 6:44 PM

Reply posted for Elif.

Wow, thanks so much for the reply. It made me feel better that other people have to reach out for pain management, and also that there is a lifestyle difference between the ostomies. After all this, it may not be the worst thing to lose this j-pouch that has caused so much disfunction.

FPO cpeters4773
Joined Jul 27, 2010

Fri, January 10, 2020 11:01 AM

Reply posted for charbs.

Sorry to hear about both cases.i'll ask my dr what would the best option be.

FPO keithjohnson305
Joined Jan 7, 2020

Thu, January 09, 2020 12:55 AM

Reply posted for cpeters4773.

I had my surgery in New York and I had an epidural the first couple days, I was basically comfortable. When they removed the epidural, it was hard, but with a PCA dialuidi, it got better. They have advanced pain management these days. Do persistently ask for something stronger if it is not working.

As for the advice of the other user, an end ileostomy is 100 times easier than a loop. With an end ileostomy, I used to go to sauna, change my appliance in public showers easliy, never wore a belt, and most of the time I forgot that I have an ostomy. Now I have a loop, as I am waiting for my takedown, and this is simply torture. So if everything fails, you can have a happy and full life with an end ostomy, you can eat whatever you want, no pain, no urgency, no complications. 

FPO Elif
Joined Jan 8, 2020

Wed, January 08, 2020 6:28 PM

Reply posted for cpeters4773.

Sorry to see your problems. I have a J pouch and have had problems, but  nothing like yours. My doctors have all noted I have a high tolerance for pain, and on occasion have tried to convince me to have a permenant ostomy.  Maybe you should consider one if the j pouch isn’t working out.  

FPO charbs
Joined Oct 31, 2016

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