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What is the surgery like?

I'm more than terrified about getting surgery. Basically, my Ulcerative Colitis never took to medication beyond prednisone. My colon isn't healing from this latest medication. I was put on Entyvio in November of 2016, but after 3 doses, it never got better. It got worse because they were trying to get me off of prednisone. Being that Entyvio was my last drug to try. I was told that if the surgeon thought it was bad, surgery would be the better option. The next day when I saw the surgeon, I got confirmation. While I never set an appointment for surgery (I'm talking to my doctor first because I'm getting an MRI for my small intestine anyway and blood work) I know it's my end result.

Does anyone know what it's like to get the surgery? How painful is it? What's it like? Do you really become infertile after getting a J-Pouch? Etc. I know the technical side, but I never got the patient side, and it sorta scares me.
 
I had my surgery recently, total colectomy on the 25th Oct , I had keyhole surgery and it went well , to be honest I never felt pain afterwards ,
When I woke up I was connected to a catheter , ng tube , a drain in my butt , a central line , which was connected to a supply of oxycodeine (I could hit the button when I needed pain relief )
the next day I was encouraged (forced) out of bed for a small walk , I felt a little discomfort and tightness but no real pain ,
My stoma (Igor) was doing well after a few days and after about 5 or 6 days I was told I would be going home soon ,
Then I had a little setback that really had nothing to do with the surgery , I got C-DIFF and that put my discharge back a while , but once the c diff was under control I improved really quickly and was discharged back home ,
The main thing I found after the surgery was that my energy levels took a while to get back to normal , even climbing a few steps was very hard ,
In about 11 days I will be 3 months post surgery and I am doing really well , I put back all the weight I lost and LITTLE more besides and my energy levels are getting there ,
The surgery is the best thing I could have done in my situation , my colon was in a fairly bad state and I had been suffering from UC CROHNS for over 30 years and it was time to face up to the fact that I needed surgery ,

I wont lie and say its all been plain sailing , but I really feel great and I feel that I can overcome any of the day to day stuff a lot easier than I used to ,
If you have any specific questions ask away and the best of luck with the surgery if you decide to go ahead with it ,

Tony

PS I dont know if you are male or female , but as regards to infertility all my bits are working as normal,
 
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Australia
There are new treatments being trialled all the time. I have refused surgery until every last non surgical option has been exhausted. Once I give up my colon - it is gone forever. I had a stoma for 18 months and hated it. I understand many people are delighted with the results. I was not one of those people. I struggled with it on every level. I now have a refusal of treatment certificate that specifies palliative care in preference to a permanent stoma. I would rather be on Pred until I drop, than have a stoma again.
But of course - I may change my mind when it comes to crunch time (I am running out of options). In the interim, I'll be hanging on to my faulty equipment.
 
I had a reseection almost seven years ago. Everyone is different. They tried to get me up the next day but it had to wait an extra day because of pain. I was fine after that and i was up and walking at least twice a day after that. Let us know how you are doing.
 
So, I had a J-pouch February 2, 2000. Im pretty sure they've gotten a lot better. But I was in such a horrible terrible condition that I felt better the next day. I was toxic and had I stayed in the city I was in I would've died. Luckily I left and went to major city and he did it within the next few days. As it turns out I had one of the best doctors in the United States but my family has a terrible history. Most of them died from it. I had blood in my diaper before I was 1 yo and attempted to get help but no one ever figured it out. So at 20 yo, I was a sophomore in college double majoring in math and biochemistry and premed. I waited to late. So, for me the j-pouch was an answered prayer but that's before they realized it was Crohn's. So, now I'm in a totally different boat but I'd do it again. I've never heard of infertility issues. I'm a female. I had borderline cancer on one ovary, which means it wasn't malignant and it wasn't benign. And then 10+ years I had to have total hysterectomy. But that had nothing to do with having the J pouch.
 
My daughter (now 16) & I had to focus on her quality of life (QOL) to help decide if surgery would be right for her. It has been 1.5 years now and she is much better for it. Best decision we ever made.

It has had complications along the way, but they are way more manageable than her being tied to the toilet, in pain, in and out of hospital. Her ileostomy is now permanent, which we weren't sure of at the time of surgery (doc was still hopeful pathology would say something different), but she wouldn't have changed a thing.

We have vacationed on the beach, hiking in the mountains, and this March she is headed on a trip without me to Israel. None of this would have been possible before her surgery.

There are still moments where it is a real pain to have it (like forgetting you are out of rings when you go to change your bag), and there have been a few quick trips to the hospital in early days. Now I drive by the hospital and don't even picture myself in there like I used to. It has actually been 8 months since we had to see a GI doctor!

Good luck in your decision. It is not a light one to make.
 
My daughter (now 16) & I had to focus on her quality of life (QOL) to help decide if surgery would be right for her. It has been 1.5 years now and she is much better for it. Best decision we ever made.



It has had complications along the way, but they are way more manageable than her being tied to the toilet, in pain, in and out of hospital. Her ileostomy is now permanent, which we weren't sure of at the time of surgery (doc was still hopeful pathology would say something different), but she wouldn't have changed a thing.



We have vacationed on the beach, hiking in the mountains, and this March she is headed on a trip without me to Israel. None of this would have been possible before her surgery.



There are still moments where it is a real pain to have it (like forgetting you are out of rings when you go to change your bag), and there have been a few quick trips to the hospital in early days. Now I drive by the hospital and don't even picture myself in there like I used to. It has actually been 8 months since we had to see a GI doctor!



Good luck in your decision. It is not a light one to make.


Great to hear that your daughter is doing so well , thanks for sharing
 
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