Going to request referral to surgeon...

So I went in today for a left-sided scope, which turned into a full colonoscopy (without any prep, something to be said for pooping so many times a day that your colon is virtually empty anyway!). My last left-sided scope was only 10 weeks ago, but because I haven't been faring so well on Remicade, he wanted to see how my colon looked. I had been having a accelerated dose of Remicade; I got it at 0, 2, 5 weeks & was supposed to be getting it every 6 weeks then, but got it today, which is 5 weeks since my last. Between my last infusion and today, I initially became constipated for 2 weeks and then started having loose movements 3 times a day, which quickly turned into 10+ liquid BMs, and I was in constant pain the whole time.

So today he said the inflammation is moderately better than my last scope 10 weeks ago, but is still very much there. Today I got a double dose (10mg/kg) and he's going to have me come every 4 weeks now. He also sent a away a calprotectin test and is going to do a blood test to check am I building antibodies to the Remi.

What really got me today though, was him telling me not to go on my holidays next week. Even though I could probably say now that in the back of my mind I knew that it wasn't a good idea for me to go, I was still hoping he would say it would be ok. But he says I'm too sick, I'm coming too close to a colectomy at this point and with all the tests I've to get done, etc.... Basically I just need to get healthy before I can do anything.
That news just about broke me, as I'd been holding on to going on holidays for months now, and it was really keeping me going. (I booked the holidays last June when Humira was working for those lovely few weeks, and I assumed I would still be ok in October - I know, I know, you can never tell with this disease though!)

I'm going to be seeing him again in 4/5 weeks, when all these tests are back, to make a decision about what to do then. To be honest right now, I think I'm going to request he refers me to a surgeon & seriously talk about him about making a decision about surgery, as I think it's the way to go for me...

In one way I feel like I'm giving up... But on the other hand...I think I've given it a fair shot - I've tried almost every drug available and it either made me worse, or improved for a few weeks & then wore off.
My quality of life is next to none - I'm supposed to be doing my PhD but it's come to a complete standstill. I never go out anymore - I went to a local shopping centre for 1.5 hours last weekend and nearly passed out. And then having to cancel my holiday just is the cherry on top for me. I don't want to keep doing this - even if the double dose of Remicade does make some improvement, it has a lifetime, and for me right now, that isn't good enough. I'm too young, and don't want to be waiting for my next flare, with no options left... Or keep pumping myself full of biologics, chemo drugs, and god knows what else in the future...
Although surgery does terrify me too... I know you'll never get your life back to the way it was with it - but I don't think I'll get my life back at this stage with my colon. I feel I might as well be without it, and without UC.

So sorry for the long rant... My family are supportive of me, but they don't fully get it, so just wanted to get it all out, and see what people think.
Thanks for reading if you got this far!

Did you tell your GI also to not go on any Holiday anytime in near future, lol. That would be a judgement call on your part not his.

I completely get what you guys are saying about the holiday being my choice, and I did think about it a lot after speaking with him - but as I said, I think in the back if my head it was niggling that I probably shouldn't go. I know if I went, it wouldn't be the holiday I want to have. I was supposed to be going for a week to Disneyland in California - which is an 11 hour plane journey for me and it's not exactly a chilling-by-the-pool holiday.
Plus I think he's afraid that I'll push myself too much there & end up coming from airport straight to hospital in a bad way... Or because I'm doubling my remi dose and mtx dose that some reaction could happen and I could end up in hospital there, with no support.
If I did end up in hospital, then my insurance won't cover because I went against his wishes.
As I said, I can barely be in my local shopping centre for an hour of two without feeling like passing out, never mind Disneyland - as much as it breaks my heart to cancel it all!

ByeByeUC - thank for your words of support! Being as strong as I can be is a reason for thinking if surgery now - if I feel as strongly as I do that I'm going to have to get it as some stage in the relatively near future, why not go sooner, instead of waiting to be so sick with anaemia, malnutrition, dehydration or a blockage or the like.

For some of us, surgery isn't a panacea and we still have the same old crap afterwards. I still have problems with anaemia, partial obstructions and the like. Yeah, less severe than before surgery, obviously. But give it a few more years of NHS neglect, and I'll be as bad again.

Should add I have Crohn's and not UC, but to be honest, I don't want a j-pouch, a permanent ileostomy, or any of that. To me, life was best pre-Crohn's. I can't even remember what my toilet habits were and I never had a stomach ache in my life. Those were the days. Pre-IBD; those were the days. #neverforget

SuperBlanks: I've been having the same thought to request surgery for a couple months now and have an appt. tomorrow with my Dr. for a check-up and surgery discussion. I did take a holiday this summer - I didn't risk taking a trip as long as yours...I would be to afraid to do that. I did make arrangements with the airlines to be able to sit right by the restroom and the line start behind me so I would always have the right of way for urgent issues. It went okay and for the duration of my trip I didn't better than I ever expected. I always take my vitamins, carry electrolyte drinks and protein drinks with me to keep my iron up and so on (everyday not just on vacation), carry a change of clothing, etc...

I was diagnosed with UC in 1990 - I did get to remission and for a long time then it came back with such force. 3 years and 3 major flares requiring extensive hospital stays with blood transfusions and all. I then started on Remicade (mid 2013) and it is somewhat better but max dosage every 4 weeks now.

When I was in the hospital the surgeon said to me you will have to get the surgery sooner or later - and recommended that I take sometime and try to get as healthy as possible and then when I'm feeling pretty good sign up for the surgery. I think this is as good as it gets. I still have pain daily and generally still a lot weaker/tired way more than my normal self.

With all of the improvements they have been able to make with the after care results of the surgery, J pouch, etc. I'm ready. It won't be the same as before getting UC but the quality of life will greatly improve.

I'm glad to hear someone is in the same mode as I am right now. Get-R-Done mode. :)

I wish you the best of luck with your decision. After having a dreadful year and being diminished to a very low quality of life, I myself have made the decision to get the surgery. In fact, I'm going in tomorrow. Today is my last day with a flat tummy!

Thanks you all for your kind words - I really appreciate all the support & feedback given. Even though I don't post very much, I'm always lurking, and any time I do post, I always feel that support. Maybe I should post more often then, ha!

blue sunshine - I hope your appt & discussion with your GI goes well and you get the outcome you wish! I think that was sound advice, to get as healthy as possible for you before surgery. That's my thinking too, no point waiting until it's emergency surgery, if it's going to be inevitable anyway!

NCOT - no need to apologise, we all need to vent, and I'm sorry to hear you're having a tough time. Thank you for the tips of where to look for researching - I'll be making a trip over to the ostomy board to have a read!

My GI has mentioned surgery to me - when I saw him 5 weeks ago, he said at the point he wasn't giving up on Remi yet, but it may come to a point where I have to consider it - it was like he was just planting the seed in my head (even though I had obviously thought of it before!). And then yesterday when I saw him & he was advising against the holiday he did say I'm coming closer & closer to it. I do fully trust him, I believe he's done and is doing everything he can to get me into remission - i just seem to be someone who is failing treatments!

annadee - best of luck with your surgery!! I wish you all the best & hope that it goes well for you & you get your life back!

Katmom - my best wishes go out to you & your daughter - I hope she is happy with her surgery & is recovering well!