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Is Surgery a true cure? Or do some symptoms remain afterward?

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Ulcerative Colitis
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Posted 1/26/2019 6:09 PM (GMT 0)
We all have a rectal cuff, but some surgeons make it smaller than others. Whatever the case, it needs to be large enough to reconnect. My surgeon scrapes it so the cells are removed, but others do not.

I had awful disease in my rectum, really severe and relentless, and I have been okay. I guess I am lucky in that, but the overall situation is very unlucky, even developing UC and having it be refractory to the point of needing surgery, horrible luck there. I am thankful I am done with it...

Surgery definitely is not a "cure" a cure wouldn't have me up in the middle of the night to use the toilet. This is a "work around", and the worst part is that you won't know if you will be in better, or worse shape, until after you complete all the surgeries. A cure cures people, it doesn't leave them with varying results, and some worse off than they started.
Posted 1/26/2019 6:35 PM (GMT 0)
Many seem to be in an emergency mode with bleeding,lost weight etc etc,where surgery is last hope.So u hope disease won't throw u any surprises but it does to some of us.I won't feel I'm out of the woods til its few years and i haven't seen any bad side effects.Not easy
Posted 1/26/2019 8:01 PM (GMT 0)

notsosicklygirl said...
We all have a rectal cuff, but some surgeons make it smaller than others. Whatever the case, it needs to be large enough to reconnect. My surgeon scrapes it so the cells are removed, but others do not.

I had awful disease in my rectum, really severe and relentless, and I have been okay. I guess I am lucky in that, but the overall situation is very unlucky, even developing UC and having it be refractory to the point of needing surgery, horrible luck there. I am thankful I am done with it...

Surgery definitely is not a "cure" a cure wouldn't have me up in the middle of the night to use the toilet. This is a "work around", and the worst part is that you won't know if you will be in better, or worse shape, until after you complete all the surgeries. A cure cures people, it doesn't leave them with varying results, and some worse off than they started.

NSSG when did your surgeon scrape it ? Was the awful disease your UC or after the operations ?
Posted 1/27/2019 12:02 AM (GMT 0)

valli1234 said...

notsosicklygirl said...
We all have a rectal cuff, but some surgeons make it smaller than others. Whatever the case, it needs to be large enough to reconnect. My surgeon scrapes it so the cells are removed, but others do not.

I had awful disease in my rectum, really severe and relentless, and I have been okay. I guess I am lucky in that, but the overall situation is very unlucky, even developing UC and having it be refractory to the point of needing surgery, horrible luck there. I am thankful I am done with it...

Surgery definitely is not a "cure" a cure wouldn't have me up in the middle of the night to use the toilet. This is a "work around", and the worst part is that you won't know if you will be in better, or worse shape, until after you complete all the surgeries. A cure cures people, it doesn't leave them with varying results, and some worse off than they started.

NSSG when did your surgeon scrape it ? Was the awful disease your UC or after the operations ?

I had it done with the initial procedures. I had 3 steps.
Posted 1/28/2019 1:05 AM (GMT 0)

MarkWithIBD said...
I think UC is an infection just like Crohn's probably is. When UC patients get their colons removed they can still develop cholangitis in their gallbladders and uveitis in their eyes. A lot of UC patients have other auto-immune diseases too, like arthritis and MS. That suggests an organism.

Not seeing the connection to a pathogen here.

But I've had 90% of my colon removed. Fairly soon after having my ileostomy reversed, I developed uveitis. It's turned into a nightmare which refuses to **** off. I can't get off the steroid eye drops and have developed cataracts as a result. Vision keeps going cloudy, especially in the right eye.

To make this even more "fun", a maniac no deal Brexit threatens the supply of my medication, the supply of food, army on the streets, martial law, etc.

If it wasn't for the fact I'd be going out of my mind with worry about bag supplies, I truly wish I had kept the ileostomy.
Posted 1/28/2019 8:24 AM (GMT 0)

NiceCupOfTea said...

To make this even more "fun", a maniac no deal Brexit threatens the supply of my medication, the supply of food, army on the streets, martial law, etc.


Off topic but I truly feel for you for this. I am british but moved to mainland europe a few years ago. I hope it will be like "the millennium bug" which was hyped up to bring armageddon but was actually fine. On topic - do you have the option to switch back to an ostomy?
Posted 1/28/2019 9:42 AM (GMT 0)

NiceCupOfTea said...


But I've had 90% of my colon removed. Fairly soon after having my ileostomy reversed, I developed uveitis. It's turned into a nightmare which refuses to **** off. I can't get off the steroid eye drops and have developed cataracts as a result. Vision keeps going cloudy, especially in the right eye.

To make this even more "fun", a maniac no deal Brexit threatens the supply of my medication, the supply of food, army on the streets, martial law, etc.

If it wasn't for the fact I'd be going out of my mind with worry about bag supplies, I truly wish I had kept
the ileostomy.

I am sorry for all the additional pain you have suffered . Can you go back to your ilestomy ?
Posted 1/28/2019 11:52 PM (GMT 0)
@poopydoop - You made a lucky escape! Sadly there is no way that a no deal exit can be okay, Severe short-term disruption is inevitable - longer term I dunno about. Depends on how willing other countries are to send us food or strike emergency deals. (We will not have one single trade agreement with anyone if we leave without an agreement (technically it's just the withdrawal agreement and not even 'the' deal). There is literally no other country in the world in that position.)

Between Brexit and my eyes I am terrified every day now. The cloudy vision is appearing more much more often - I had it all day today. Sunlight makes it 10x worse, so now I am starting to dread the prospect of summer and literally hazy days. Have to try and tell myself if it's cataracts it's treatable with surgery. Eventually...

Anyway, on a tad more cheery note, I could go back to my ileostomy if I wanted to I am sure. I haven't seen my surgeon for over a year, but the last time I saw her she was willing to do it. The downside is it *probably* wouldn't stop the uveitis - it might, but there's no guarantee. The upside is that I wouldn't get urgency, butt burn and unbearable butt itching. I could go on walks without worrying again.

Also, I think I was physically at my healthiest when I had the stoma. I must admit, at the time I reacted badly against it but now I miss it in some ways. If there was a guarantee it would get rid of the uveitis, I would have it back tomorrow. Well not literally tomorrow, 'cos of the Brexit business. But as soon as medical supplies were assured.
Posted 1/30/2019 3:41 AM (GMT 0)
JPouch compared to UC, no comparison, UC = Dead, Jpouch = Alive and well.
Posted 1/30/2019 2:47 PM (GMT 0)
Hang in there NCOT, it seems you can never catch a break (despite thoroughly deserving one)! Things are pretty crazy here too in the USA, I know we can't really get into politics on this health forum but I get it and hope some sanity is restored on your side of the pond asap!
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