Newly diagnosed and desperate for surgery?

Ive only had this disease for 6 months (flare the whole time) and I have thought about surgery. Ive watched videos and read articles on ostomy bags and what surgery is like and pouchitis...

But to me it doesn't seem a "quick fix"

Its a life changing procedure that I dont think I could make at this point. So many options still. So many things to try that would allow me to once again have a glorious well deserved dump! So many nights to sleep on my tummy that I wouldn't want to miss between surgeries. So many risks... so many things... to go wrong... leaving my cats behind?! With my husband?! They'd all be dead within a week (hubs too!)

Its just such a big decision. It may seem like after reading peoples stories or watching videos... they make it seem not so bad! But that's not ao bad - - compared to what they were dealing with before. And also because they want to show people with little hope that life is still possible without a colon!

But it is nothing like the life you could have WITH your colon if you tried a few more drug therapies.

All, of course, my opinion. And quite a bit of Word Vomit... whoops :)

All I can tell you is I wish I hadn't waited so long to have surgery. Now, my UC was severe and I had pancolitis so I really was putting off the inevitable. Many people don't have UC severe enough to think about surgery especially if they are new to it. Most UC'ers do just fine on meds and taking care of themselves with diet. So I suppose it just depends on how bad your UC is and what your quality of life is with UC. I wasn't living anymore, just existing. I couldn't even leave my house that's how bad I was. I missed out on so much as my kids were very young at the time. My life and health has turned around 100% by having j pouch surgery. :)

hey snoop - sorry for your pain -

if you haven't already, I would suggest spending some time over at the ostomies forum - it might help you get a feel of what the bag and jpouch folks are dealing with -

good luck whatever direction you take in your journey

People wanting to have surgery before they become seriously ill seems to be becoming a more common thing.

I personally would rather have lived with Crohn's than had my colon removed. Bear in mind I can't have a j-pouch, so I'm stuck with an ileostomy. But then again, a j-pouch doesn't seem so wonderful, reading between the lines.

Personally if I could turn back time, I wouldn't have chosen surgery. I'd have kept going on steroids and tried every experimental treatment before opting for surgery, and I doubt I'd have regretted a moment of it: life with a bag is no fun. I'm sick of fearing leaks, of actually having leaks, of stoma nurses I can't get to see anymore, and of feeling like I'm forever doing something wrong compared to everyone else, only I don't know what it is that I'm doing wrong. My life hasn't been given back to me: in one sense it feels like it's been made worse than it was before. There is not a day which passes where I don't wish I could have found a way to keep my colon.

But yeah, whatever.

That, I wouldn't like. I don't like being a slave to supplies. I have enough products I buy. It's no different than needing medication but a day without medication is usually no big deal. a day without ostomy supplies is a severe problem

And that's absolutely spot on. Being dependent on something absolutely crucial to your functioning is terrifying to a chronic worrier like me. I hate it. Nearly had a nervous breakdown today over my supplies not having arrived; my mum got me to call the delivery company and the lady over the phone was very nice about it. But I've got 40 or so odd years left of my life, assuming I live a normal lifespan, and the thought of needing these bags every single day for the rest of my life..... is grim. I'd rather dash to the toilet a few times a day than wear bags, in all honesty.

Post Edited (NiceCupOfTea) : 12/31/2013 10:54:21 AM (GMT-7)

Thanks, ByeByeUC.

I'm sorry.... I just kind of let it all spill out! :-/ Had a couple of accidents in the past few days and, while they weren't bad ones, it always dents my confidence when that happens. Then there was the minor panic attack over supplies... (now sorted, I hope). Plus I had to pay nearly £200 today for my car window's electrics to be repaired, and the stupid switch still doesn't work properly! (To be fair, it wasn't the switch that they were replacing.)

Urgh, I need to get a hold of myself and get over this dark mood.... Here's to 2014! Literally can't come soon enough... >.>

Thank you all so much for the replies. One factor I did not mention is that I have already tested positive for dormant TB, so I do not know that the bio drugs are an option for me. I am in the hospital now with IV steroids. They are not giving me the violent reaction that enemas did. I only hope this will do it.

I think I will indeed go visit some boards for those who have gone through the surgery. There is so much "luck" to this disease, so I suppose I need to see first if I am the lucky one that a certain diet, medical therapy, or lifestyle change can help. Then I'll hope prednisone will be the successful drug for me.

Another question for you all: I had success with the first flare from Rowasa alone. My doc seems opposed to oral 5ASAs because of how long they take. I am going to talk to him about trying those first if I see another flare coming, so perhaps we don't have to jump to steroids. Does the oral make a big difference for you all?

I was able to get in remission from my first pancolitis flare up, which was moderate/severe, with Asacol alone. It worked quickly for me. I was very ill one day and a few days after starting 3600mg of mesalamine orally, I was MUCH better. I also continued using rectal meds. I stayed in that remission for about a year and then had a bad flare up that required prednisone and I was unable to taper off and ended up having to start 6mp. Since then, i've been in remission for a couple years.

Just curious... who is treating your UC?

Like once you got your colonoscopy, were you referred right to a gastroenterologist?

Thanks everyone, again, for the replies. I am seeing a GI. I don't think I will stay with him because he doesn't seem interested in many alternatives other than drugs. I asked him if he had dietary recommendations when I was diagnosed, and he said I could eat anything, it wouldn't affect UC.

I was on Rowasa after the first flare, 3x a week for maintenance. My wedding gave me a small setback, but upping it to daily got that under control. Then Thanksgiving was just too much. I do know that I am doing some big no no diet moves, like too much salt, decaf coffee (large one every day is still quite a bit of caffeine), and raw veggies. I have a lot to learn the hard way. I just hope mine is a controllable case.

I am looking into a good teaching/research hospital near where I grew up. I am going to call for a consult when I get out of here. They work closely with the surgeons there, too, so hopefully I can get some education on the matter.

Thank you all for posting so many of your experiences for us new folks. It has helped my perspective immensely.

A lot of people focus on the fertility issue of surgery, but what gets overlooked is how dangerous some of the meds are, and just being sick while pregnant. Also, just being really sick can cause fertility issues.
I was 29 when I had surgery, my son was 2. I missed all of my 20's and the first 2 years of my son's life with this stupid colon! I was not a good Mom, I couldn't do things with him, couldn't take him places, couldn't even put him in the high chair sometimes because I was too afraid I would have to go right away! I often tell my stupid little story about how when he was little he played in the bathroom with those crayons that are SUPPOSED to wash off the shower walls. My walls are still covered, I have left it on purpose to remind me why I had surgery.
I chose a bag, I didn't want to mess with the extra surgery for a j-pouch. Having a bag hasn't stopped me from doing anything at all! I can do anything with my son, go out with my husband and friends. I just got back from a girls weekend in Nashville, bar hopping and listening to lots of great singers. A few months ago we took my son and his friend to Atlanta for a long weekend. All things UC would have never let me do.
As for the cost and being dependent on supplies, I didn't take that into consideration and here is why. Before I was dependent on medicine. I had to pay for medicine and constant tests and dr appointments and random ER trips. If my insurance didn't pay it would cost me about 1,000 a year to pay for the supplies I have to have. That's really not that much when you think of what you pay for medicine and doctor visits. I think my meds were about 800 a year, for prescription medicines, that's not counting the immodium and pepto that I lived off of.
Anyway, it's a hard decision, not something to be made on the spur of a moment by any means. BUT it is better to do it when as healthy as possible. The sicker you are the harder it will be to recover.
Good luck!