In the hospital - upcoming surgery

Ok, so I've had an interesting couple of days. Writing this as I sit in the hospital. As some of you know I've been battling a flare up for the past 2 months with steroids not really doing their job. Keeps the bleeding under control but still going to the bathroom 10-15 times a day. Started remicade on August 15 and had another infusion on the 29th. There was absolutely no improvement after either infusion.

So I had an appointment with my GI on Wednesday afternoon to discuss surgery as the next step. He wanted to do a scope the next day to report to the CR surgeon and mentioned surgery possibly next week! So I had to start my prep immediately for the scope which I wasn't happy about since it was almost lunchtime and I was starving haha.

I go for the scope, shows inflammation through the entire colon but GI said he was able to go the whole way up which he hadn't been able to do before since I've had inflammation so bad in the past he did not want to perforate. So maybe inflammation not as bad as he led on? Anyway, while still coming off the sedation, he says he wants to admit me to the hospital because he's worried about perforation. I fought it at first, but caved in, I wish I hadn't. They shouldn't have people make decisions like that so soon after sedation haha. In the meantime, he informs my husband that he scheduled me for surgery on Tuesday, September 4th! The surgery will be at a hospital 5 hours from where I live.

So the first night in the hospital I'm put on bowel rest, just ice chips for 24 hours! I had not eaten since Wednesday morning and this is late Thursday. I was able to have clear fluids at 5 pm Friday. I'm put on IV steroids and fluids. The doctor on the floor comes to see me the first night and while talking about everything he says he has no information from my GI about my surgery being scheduled! What?! Then he says he's off Friday but the doctor who is here will look into it. Ok.

So yesterday I wait and wait for the doctor to come, because I also want to be discharged from the hospital since my logic is if I've been in a flare up for the past 2 months, is another 4 days at home going to make a difference. Plus I have a 14 month old at home who I would like to spend time with before I go for surgery since she won't be coming to the city where I'm having surgery, she will be staying at home with my mom.

The doctor finally comes at 4:45 pm says he has no record of the referral for surgery and that he would call the surgeon, oh who is on vacation, till the 4th. He said he would get a hold of him and come back. He didn't come back! So here I sit in the hospital feeling like I normally do which I could be doing at home. Oh, and I'm sharing a room with another patient and I'm in the bed furthest from the bathroom. So I've had a few accidents trying to get to the stupid bathroom since I have to drag my IV pole around with me. At least at home I can make the quick run to the bathroom and usually make it, sometimes I'm not so lucky but at least I'm at home.

Sorry for the long post, I am just frustrated with not knowing what's going on. I feel like I'm being left in the dark about a major decision and I hate not knowing if surgery is scheduled or not. I wasn't given any info, the only thing the GI told my husband was that it was scheduled for the 4th. No time, no other instructions. I just want to know what's going on and really hope I can get some answers this morning from the doctor.

Thanks Andrina! Yes, I will be having a colectomy with a temp ostomy then j-pouch.

     Oh GOD!!!  Sounds as if the right hand doesn't know what the left hand is doing .  I know your predicament about the bathroom....been there!!  Ask for a portapot to be placed next to your bed.  They should be glad to do that for you!  Good luck!!!

Gosh Ashley that sounds terrible!
So are you stuck in Edmonton now? If they airlifted you there will your husband have to drive you home and go back for your maybe appointment with the surgeon?

Sounds to me as it was terribly rushed.

And I know what you mean about the pole and wire! Had a fight with a nurse once cause the wire wasn;t long enough to make it to the toilet! I was lucky I was on my own but when she said to not worry just do it in the bedside pot I said NO I want my wire.
I barely made it most of the time but wow the satisfaction of a wire that get to the toilet.

So I guess you are stucked with bad afternoon soap operas then?

@tournevice: we got back home yesterday afternoon since I have nothing scheduled yet.

@quincy: yes, talk about a huge waste of provincial resources! It's exactly what my husband and I were talking about on the way home. Those resources could've been used for someone who really needed it!

Ok at least you are home but still the GI could have put you on total rest and higher dose until you see a specialist.

The hospital didnt have the effective for your surgery but for sure they did have the effectives to keep you stable. And they should have done that and the GI should have just made a conference call with him and you to be honest. Surgeon seen it before and GI could have faxed him your results and colonoscopies and then they can decide when to see you.

Where the helicopter pilots are least a bit sexy in their uniform? ahah

Agree with u babygoose and Q , scary. This system we have ..... Eek !

When there is sadness at the hospital a nice guy in uniform is the answer ahah

@ActiveUCer: The surgery would be done at the Edmonton hospital regardless; we don't have a colorectal surgeon at our local hospital and even if we did, I don't think I would trust them! I go on the ostomy forum as well as jpouch.org, I am planning on having the jpouch. I hope your surgery went well!

Surgery went relatively well. I think my colon was in worse shape than the thought, but all they wanted out came out. Recovery hasn't been too bad thus far. Unfortunately I have to go back on a liquid diet for 24 hours :(.

Best wishes navigating the medical system. And especially for the upcoming surgery!!