I guesstimate 2 months...

For all that I'm thought of as being 'anti'-surgery, I've actually suggested surgery myself many times. Not in a gung-ho, "you will wonder why you never did it before", kind of way, but in a more measured, "well, I think you should consider surgery" way. In fact I've mentioned it loads of times on the Crohn's board.

Only on this board do I seem to end up being an extremist who either wants to drag everyone 1000 years forward into the future (yay scanning machines which heal all diseases in 30 seconds!) or drag everyone 1000 years back into the past (yay blood-sucking leeches!), whereas left to my own devices I'm really quite mild and would happily suggest surgery as a possibility to lots of people.

Wow. lots to think about.

Hi Katie,

I am guessing you don't know me, i don't have a dx of UC, but i identify with a lot of things that i read on here. i do have chronic constipation and severe bowel incontinence, along with many other medical problems. i take many laxatives, which usually don't work, so once a week or so, i take a jug of bowel prep or a bottle of mag citrate, then sometime in the next 24 or so hours, i start severe diarrhea--which lasts hours or sometimes days. i have little sensation and really cannot tell the difference between gas and a BM. that leads to frequent accidents. my problems are due to severe nerve damage from a birth defect. i just started seeking treatment for the GI stuff this January. i already have many days when i just want to call the doc and say "can't we skip ahead and just do the surgery already?" bad thing is that my current GI, (yes i'm on my 2nd one since jan.), who is wonderful and very well respected by other docs, told me flat out that he's pretty much certain that i will need an ostomy, most likely removing my colon, maybe some other stuff. i know it's a big deal, once it's done, that's it, no going back. but....even my doc pointed out that i have a really poor quality of life right now.

i think that for me at least, the deal is this: i will try the treatments that my doc thinks might help, such as different meds and biofeedback, but after giving that stuff a fair try, if i have not gotten significant improvement, then let's do the surgery. i think it's a decision to be made by myself and my doc, working as a team. i refuse to keep living the way i am. it is not living. i'll spare you all the details. but worrying about crapping myself every time i leave the house is crazy, i hate dividing my attention between my friends conversations and my thoughts of did i just crap? do i smell? when is it going to happen? i don't want to feel sick every time i eat. i don't want to take 2 days out of each week to sit at home gagging on a gallon of bowel prep and then spending half my weekend in the bathroom. my first GI doc actually told me that i would just have to learn to live with it, and i would be doing those things for the rest of my life. i never went back. i still do that stuff now, with the understanding that it is a temporary solution. if there were no other options, then yeah, i'd have to learn to accept it. but the ostomy option is out there. sure, there's no guarantee that it will work perfectly or whatever, but things aren't exactly "working" right now. i am going to biofeedback tomorrow, and have been told it probably won't help, but there's no side effects with it, and we'll know in another week or two if it's worth continuing. then there's another test or two to be done, and then the next step is surgery.

i guess the point of my long-winded post was to let you know i understand. yes, surgery is a big step. but only you and your doc know if there are other things worth trying, or when you are ready to say "enough" and go for it. i hope that you have a really good doc, who you trust, and who understands how all this affects your quality of life. as i said before, your doc should be your partner in making this decision. if you are unsure, consult w/ another doc. this might sound simple and obvious, but maybe write out a pro's and con's list of having or not having the surgery. i'm not thinking it will bring up anything earth-shattering, but it might make you think about factors you hadn't considered before or provide even more support for the choice you made.

bottom line: it's your life. you have to do what's best for you. go into it with eyes wide open. do your research. make yourself aware of the common problems people have and of the things that may not work out the way you want it to, not to be discouraging, but to be realistic. talk it over with someone you really trust. i'm sure you want to hurry up, get this done, so you can get on with your life (i know i do). but just take enough time to think it through.

i hope that you will figure out what's right for you. i don't know all about the options you have available with meds, etc. or what you have already tried. so i'm not gonna sit here and pretend that i know what you should do or try. good luck. i hope you keep us posted on what you're thinking and/or doing. you can always post your thoughts or questions here, and the responses you get, well, take what you want from them.

i'm embarrassed this got so long, i feel like i can really relate and want you to use every tool you have to make this decision.

ok, i'm done. really.

I won't advise one way or the other- But, a surgical consult is never a bad idea. Surgery is a treatment option like any other- why would you hide from it? Plus, a consult takes away a lot of the mystery & fear surrounding it. You'll know when you're ready, bottom line- whether it be 2 months from diagnosis or 20 years. Is it too early for you??? I don't know... Browse around on the j-pouch forums, the ostomy forums, etc- you'll get a better take on it than on this forum. In reality, this is not the place to go looking for surgery advice, info, etc. And like pluot- you can always email me, or her, or many other surgery veterans for more detailed questions. Hope you feel better soon!!!

Horrible what you are going through. You said that you wanted to try cortifoam next and couldn't hold the enemas. I never did enemas so I can't speak on that, but when my flares were absolutely horrendous my Dr had me on cortifoam at night and canasa suppositories in the a.m. I can't stress enough the benefit of the rectals. Even if you can't hold them for long, anything is better than nothing. Also, have you considered 6-MP along with the remicaid? I just want you to consider everything that is out there so there are no regrets. Also, I'm not the most patient of people...always wanting my meds to work immediately. Unfortunately, this disease is like a non-stop machine and requires time for the meds to kick in.

Low grade fever and distended tummy are gone! Was getting worried at about 3am... but 3 diapers later and both have gone down :) :)

Called my GI and talked to his nurse. They will call me back by end of day.
I asked for Cortofoam or Suppositories ... get something in the rectum to calm it down.

Going to try mostly liquids this week. SCD/GAPS intro diet... making chicken broth. And try my almond milk/ground almond/ground oats smoothies again too.

Also def going to get VSL3.

**fingers crossed** trying to stay positive. Very difficult.

I wont feel bad if I get surgery before trying every drug under the sun... but j would feel bad if I get surgery before trying all the diets.
I know I would have so many "I wonder if"s

So im going to be firm and strict with myself and try some foods out, keep a journal too.

Thanks for the support and all the point of views!

I'm sorry you're struggling so much.

As for whether or not it's time for surgery, only you know.

GI wont prescribe new rectals. And I am too swollen to try entocort again.
i am acquiring some cortifoam so im excited to try that.
and if it works ill get my GI to prescribe it.

I do also have some bentyl that seems to be helping more now than previously.

Keeping foods simple, didnt eat much yesterday but still up a bunch this AM and had 2 accidents.

Going to get VSL3 this week.

GI won't prescribe more rectals??? That's extremely odd. Did he give a reason? My GI will give me anything I need to treat UC to try to get me in remission. If you had a hard time with one of them (entocort) that he prescribed, he should be more than willing to have you try another which may work better for you. Especially since you have major urgency issues with accompanying mucous. That's very symptomatic of rectal inflammation. If you get the cortifoam from another source, how will he suddenly be convinced to prescribe it to you? I would push him for the rectals. And if he doesn't want to give them, he may not be the doctor for you (just my opinion of course). I've found that I have to be very vocal and involved with my GI when it comes to this disease. I fired my first GI because he didn't like that. Too bad, my body and I don't want to suffer. Now I have an amazing GI. Hope it works out for you so that you don't have to continue to suffer.

what diaper are you wearing, I have a really great brand that I can recommend trying. With my diaper brand and it's so easy to put on, it's a "pull up", you can crap to your hearts content.

WTH! sorry but your GI is stupid, call him and ask for rectal mesalamines asap. He cannot deny you meds, the worst that could happen is they don't help, so what atleast you tried them.

Conquer... ive had entocort. And I had worsening symptoms with oral Mesalamine. So... I dunno. Im calling right when they open and demanding to have a phone consult with him within the next couple days.
also going to try to get remi sooner.
And hopefully doubled. Or atleast have my next dose moved up to sooner as well and maybe also doubled. I dont know.
Maybe add 6mp/Imuran but really... I dont have months to wait around for those to work!

I am def in force flare. :'(

Ice pack calms things down. Heating pad on my guts usually speeds things up and im running to the bathroom even more. Or feeling worse gas pains.
but when my guts are empty, heating pad is great!

Oih. Also heating pad is always nice at work. So it will def be coming with me today. Wonder if I can strap some ice packs to me under my bridesmaid dress this weekend :D

Katie,

When was the last time that you were tested for C.diff and other bacteria infections?

My GI would also test me for C.diff/other bacteria infections every time my symptoms would worsen.