Why not surgery?

True story.

When I first searched for pictures of stomas online, I felt like crying when I saw the pictures. That was my initial reaction. I tried to brush it under the carpet after that, because at that stage a colectomy was looking likely.

But yeah; I thought it was gross then and I think it's gross now. On top of that, I also have the probable return of Crohn's one day. I won't say that surgery for UC is a 'cure', but it is more of a cure than surgery for Crohn's is. You might have endless other problems after surgery, but UC won't be amongst them, except for perhaps extra-intestinal manifestations.

Me, I still have a possibility of strictures and fistulas, oh deep and abiding joy.

so I'm a troll now?
I had hoped things would remain civil here, not the case.
Like a few others, perhaps my time is done here, cheers.

What? What dude said. I wasn't calling anyone out as a troll. For whatever it's worth, I wasn't even thinking of HW when I wrote that. Was thinking of another site which has 3-4 notorious trolls who always draw replies, no matter how many times people claim to have them on ignore. Provided a troll can avoid being banned, they can usually keep going for years, 'cos somebody, somewhere, will always give them the oxygen of attention.

But I don't think you're a troll. Other people were having a bit of a go at you for being antisurgery, and saying you shouldn't read the surgery threads. So I said it wasn't as simple as that for psychological reasons, that's all.

It's easy to resist stuff that bores us. In fact you don't even have to try, you just naturally skip past the boring parts of newspapers for example.

But when you're scared of something, you are not bored by it. In fact you are deeply interested by it. You keep one eye open out for it all the time. We spent millions of years looking out for sabre-toothed tigers, or whatever, and cannot turn those ancient instincts off by any conscious act of will.

@Somedude- you asked for whether I agree or disagree re your def of "normal". That's a tough one for me because I feel like Pluot does that "normal" is irrelevant. But yeah, perceptions by healthy normies would be that a bag is akin to being handicapped, sure.

but nobody actually SEES your bag, do they ? are you an outy ?

I was at my primary care doctor's office today(he's also a GI, like for c-scopes but not an IBD specialist) for a routine check up and during the course of my conversation I said "My body has completely failed me". I never planned to say it but it just came out of my mouth in a normal honest conversation with my doctor.

There are a few things holding me back from going for surgery right now like the surgeon that I want to use doesn't participate in my insurance plan(that is fixable), my IBD GI just switched hospitals (and I want to go where he is), downtime at work and a planned vacation in August that I all ready paid for.

But if I had to go in next week for surgery I think that I am mentally ready for it and the 2% chance that I'd need to have a bag permanently.

I've heard some people with J-pouches say that you know when it's time for the surgery; I think that I'm ready.

beatUC said...
so I'm a troll now?
I had hoped things would remain civil here, not the case.
Like a few others, perhaps my time is done here, cheers.

 

things are most civil, heartfelt and honest considering the topic.  Please try not to inflame and create a problem that isn't there.   You sling lots of stuff, so try not to become a victim of yourself.

q

quincy - KUDOS to you! Very well written and meaningful response to the misunderstanding!

There is something NiceCupOfTea said that has stuck with me for over an entire day - a very valid point that I had not considered (which is why these threads are vital to those with UC who are curious) - anyhow it's on page 2 that she doesn't "like the dependency on specialist supplies (what if there's a petrol crisis, or something, and supplies cannot be delivered?)"

For me, in my medicinal treatment, at the end I was on Humira (delivered to my house), Colozal - special ordered by my pharmacy and Cortisone enemas -also special ordered by my pharmacy. The same would ring true here in that if there were a "petrol crisis" - I was still dependent on specialty meds. Hypothetically if they had brought me into remission, any crisis would have thrown me out of it.

Then I realize there is another perspective or pro/con to weigh in deciding about surgery that I do not believe has been mentioned in this thread as of yet. The cost of monthly medications I do understand they are incredibly variable, but I live in NYS and barely make the cut for welfare insurance, so if I were to get a job, I'd lose the coverage and my meds would then cost me:

Humira 2500
Colazal 450
Enemas 780
TOTAL 3730 per month with no remission insight....

I do understand that some pharmaceutical companies offer patient assistance, but it still doesn't always make the medications affordable. I included this financial aspect when considering my surgery. We work very hard to have no debt. No credit card debt, no car payment & even paid off our home early. The last thing I wanted was for UC to also steal away my financial freedom.

ks1905 said...
Pluot, Suebear, ByeByeUC or anyone else who has had surgery:

I'm planning on going for Laproscopic J-pouch surgery probably in 3- steps, how long were you in the hospital for each step?

I had a two step done laparoscopic. For the first step I was in the hosptial for 10 days. I would have gone home sooner but my ileostomy output was very high and they wouldn't let me go home until it slowed down. I was in the hosptial for 4 days after the takedown surgery.

I had 2 step done laparoscopically. Step 1, I was in the hospital for 5 days. Step 2, I only stayed over 1 night.

NiceCupOfTea said...
soystud - You ask rhetorically how long a bag is for. With UC, a few months. Biting my tongue here. If you're implying a bag is for life with UC, that's disingenuous to say the least. But you read these forums: I'm sure you know better.

Now Crohn's on the other hand, that usually does lead to a permanent stoma if you have to have a colectomy because of it. I should ****ing know, I'm living the bag-wearing dream right now.

With regards to the original question, GIs are nearly always conservative about surgery. Discuss surgical options with a colorectal surgeon, not a GI. If the colorectal surgeon is cautious, that would make me have second thoughts more than if a GI was cautious.

I'm gonna end this post with one positive thought about surgery. I did not, and still do not, like having a bag: I don't like the dependency on specialist supplies (what if there's a petrol crisis, or something, and supplies cannot be delivered?), the fear of leaks, and so on - it leaves me feeling vulnerable and, ironically enough, always as though I have to be near a bathroom when I'm out. Believe me, if I can get a reversal next year I'm getting a reversal - but that depends on having a disease-free rectum, the Crohn's not having returned in the small bowel, etc.

Yeah, the positive bit: I almost forgot about that <_<. Basically, I didn't realise until recently just how ill I really was before surgery. I was keeping going on high doses of steroids for much of the time, and at the time I thought I felt okay on them, but I didn't. I was ill, even on 40mg Pred. So removing your colon will probably make you feel healthier once you have got over the surgery.

What was your recovery like post-surgery? If you've already gone into it in detail somewhere else I apologize, but perhaps you can do a copy-paste job for those of us who are curious about your experience?

PSUDOC said...
Edith, welcome. Definitely come over to the Ostomy board - you'll find lots of people there who have been through the same thing. I am having reversal surgery this week, but I can tell you tht living with the stoma is not bad at all. It quickly becomes routine, and it doesn't prevent you from doing anything you want. I just spent a week at the beach, we have folks who run and bike, Suebear is an avid hiker. You can have a full and active life with an Ostomy. You should definitely check out some of the blogs out there (a Google search for Ostomy blogs will bring up tons) and search for a a local Ostomy support group - they can usually connect you with people similar to you to talk to. Good luck.

Good luck to you on your surgery, it's a quite a quick turnaround considering you just had your colectomy in April.