If it's good news, why do I feel bad?

Had my C-scope on Monday and it seems my colon is pretty well healed, although my rectum is still pretty bad (GI said he'd call it a "7" where 10 is extremely ulcerated) and a bit above that is a "1." I started back with Rowasa Tuesday night. Kept it in all night, felt a bit better the next day. The fullness down there I had been feeling abated somewhat, although I still felt a bit nauseated in the morning for a couple of hours, nothing too bad though. Last night for some reason I just couldn't hold the Rowasa; it kept "bubbling" out even though I tried blocking things up with paper towel. At least it contained the mess somewhat. This morning I felt awful -- I hadn't slept well, I felt nauseated for most of the morning, went to the bathroom numerous times ...

My GI gave me two prescriptions, one for the Rowasa and one for Canasa. Said the Rowasa was much more effective. I am still using some Rowasa I had from awhile ago that is still good so I haven't filled either. If I start with Rowasa and can't keep it in, can I then use the Canasa on the same night? Or am I just SOL? I have a follow up with my GI in a week, but I was wondering what you all know about this.

Mainly, if I have apparently had success with Remicade and am mostly healed, why am I still feeling like crap most mornings and why am I still feeling really run down? I had a blood test just a few months ago and iron and vitamin stores were within normal ranges. I will likely get more bloodwork done next week as my GI is good about that. I was looking at mesalamine information again and saw that liver and kidney function should be tested perdiodically so I intend to ask if that's been done and if not have it done.

I used to work out daily at the gym but haven't in more than a year, maybe even two. It's been six months since I weaned off the Prednisone but the few times I went to the gym over the last month I haven't been able to complete a work out. The most I have been doing is long-ish walks with my dogs most afternoons. Today I came home and crashed for a couple of hours though.

It's very frustrating. I had gotten myself emotionally ready to pursue the surgical route, and then my colonscopy cameback rather hopeful, but I am still not feeling well, so I just don't get it. I had always been an active person and very healthy. I miss feeling well! It's kind of depressing. My husband is EXTREMELY supportive, but I feel like a slacker around the house. I am pleased that I have managed to keep up with my business and it's thriving despite how crappy I feel most days, I just tough it out and get out and work.

This forum is awesome, thanks in advance for your feedback.

Meesh

Meesh, what does your GI say about your tough mornings? I feel like you- not bad, but mornings still pretty much stink & I'm tired a LOT... I think the tiredness is just a side efect of the meds for me, although you're not on any immune suppressants, right? I think mine is due to the seemingly gigantic dose of Imuran I take... But one would think the Remicade would help with the mornings- if things look basically ok, then why the urgency? hhm... good luck with the enemas- I haven't done one in a long time. I can't do them anymore, I just hit a wall when it comes to those things. They do help, don't get me wrong. Perhaps at your follow-up appt. tell your GI exactly what you've told us- why are you still feeling so horrible, is surgery worth looking into, what's the deal?!?!?! I know that active disease kicks up your metabolism more than when you're not flaring, which can make you tired. If you're not eating much on top of that, I suppose it could really knock you for a loop... sigh... but I empathize! What's that old saying, "I'm sick & tired of being sick & tired!"

I'm the same way, Meesh. I had surgery scheduled and withdrew from classes b/c of it; I had gone for upper and lower scopes to make sure I didn't have Crohn's and what we found was that Remicade healed everything but the last few centimeters. My GI was very confident that rectal meds would send me into a full remission quickly; it's been a month and a half since my scope/starting rectal meds and I'm still not in remission yet--I still have a little blood and definitely have morning urgency. It's very frustrating.

right, I know that Remicade suppresses the immune system, but I meant any other drug solely to suppress your immune system. Know what I mean? Like 6MP, Imuran, etc. Anyway, I do hope you get to the bottom of this soon- it's disheartening to feel that this is as good as it gets. Who knows, maybe just living with a chronic illness takes a toll on one's body, & over time, you just wear down more than a person who isn't chronically ill. Because even if we go into remission, would we still be considered chronically ill? We'd still have UC, so.... not to be a downer!!! It does seem like a lot of us right now are in the same boat & not really sure why. I can deal with how I'm doing, but... And then again how much of it is just general aging? Try the gym- wait 'til you have a good day or so to recover, if need be, & see how you do when you really push yourself.  I'll be anxious to hear what your GI says. Keep your chin up!

Awesome news Meech!!! You ve a lot to heal, and the rectum is really the worst and longest to heal...

You might want to consider to try the Canasa during the day in the afternoon...that might be enough to help calm the rectum enough for you to be able to hold the Rowasa in all night.

The other options could be to ask your doc for dicyclomine which is an antispasmodic...to help calm the gut a bit...use it before bedtime about an hour before using the Rowasa.

Hope you continue to feel better...

quincy

I'm so glad that today has been good for you!

I'm in the same spot - scope was good, mild inflammation, but I still feel like HELL most of the time. Crazy tired. Urgency. The list goes on...

I hope tomorrow is a good one! (and the next day and the next day...)

You guys are all so awesome!!! Thanks for the support and advice.
Meesh

Been feeling okay last few days. I even raked the yard yesterday and had a cocktail last night and feeling fine this morning. I guess the Rowesa is doing its thing. I plan on filling the Canasa 'script as well though for nights that the liquid is too inconvenient. I find if dinner is on the late side that's when I have trouble holding it in.

Meesh