Yeah I thought they always left 1-2cm I’d cuff as well. I took a poll on FB and about 35-40% of people had cuff removed (if they actually understood the extent of their procedure). Some people on...
thanks everyone! I will stick around to hopefully help others who are going through/about to go through surgery. notsosicklygirl -- out of curiosity where did you get yours done, and did they remove...
hey everybody, not sure if anyone cares or not but I just wanted to say hi. I was in remission for five years med-free (couldn't stay on mesalamine since it damaged my kidneys) and went into a bad...
I don’t know which to get for my ileo, thick or thin? I’m using a Coloplast Sensura Mio light convex wafer 2pc click. I would think the thick version would provide more of a seal?...
Wow Andrina you’ve been through a lot! I hope you continue to get better. Will be sending lots of positive vibes your way :)...
NSSG you mean step 2 wasn’t as bad recovery wise?...
Thanks Andrina. I am already nervous about step 2 at this point, as I’ve heard it’s a much more painful procedure. But, I need to just focus on healing now. A lot of pressure to pee after the foley...
Yeah I understand it’s not definitive. One step at a time. These gas pains and rectal spasms are for real though! Just got up for first walk and did a few short laps. Gingerly taking time to get out...
Surgery done! Like others have mentioned, it’s true that I can actually feel the monster is out. I keep worrying as I lay here in bed about getting up (I’m still fairly fresh postop) about having to...
Thanks Andrina? Do you think you’ll go back to an ostomy?...
Thank you all so much for the encouraging words!! I’m already looking at a couple stealthbelts. My work colleagues wanted to get me something so I told them just get me one of those! No time yet for...
I’m actually looking forward to it! Yeah hopefully the pouch works out, if not I’ll adjust to the ileo I’m sure....
Thanks NSSG, I’m pretty sure I’m going to feel the same as you. Yeah the negative experiences are obviously more commonly broadcast on the internet, but it sounds like most people are doing very well...
They don’t want to try Xeljanz so close to the remicade doses, and my UC is pretty severe at this point so just needs to come out. Can’t really afford to keep waiting at this stage to see if a...
Well, surgery scheduled for Wednesday. Tried two remi infusions one week apart with no improvement. Required two blood transfusions. Steroids not helping. They offered cyclosporine, but nervous about...
Basically a pelvic X-ray, make sure the ole colon isn’t dilating while on steroids....
Moving up next remi infusion (will be second), daily KUB, flex sig with biopsies to rule out CMV, more stool tests, CT/MRE to make sure it isn’t Crohns, blood transfusion tonight as my hgb is 6.6....
I think I prefer the 3 step, sounds like the results are better if done that way. The military is covering everything thank goodness, and CC is in network. Sucks that I had the one BM yesterday with...
I’m on day 4 of IV steroids, I had one BM today that involved no D, some little nuggets, and perhaps two small blood clots. I was blown away. Then the next one after that some D, little blood, and...
What would you have done differently? I’m very sorry to hear what you’ve been through Andrina....
I do apologize to Andrina, I’ve just seen that same comment posted before in other threads and assumed that was all she contributed. I can only blame myself for jumping to conclusions and not these...
CC how long were you on IV steroids for? I would think that after three days the bleeding would let up at least a little. If it doesn’t, I’m sure the colon will have to come out. Obviously I’d like...
8.5 yesterday I meant...
Keith I know that it is not a cure and never said such, so I don’t know why Ms Negative Nancy mentioned that. I had stool studies just before starting IV steroids. I mentioned the cyclosporine to my...
You basically say the same damn thing every time and it does NOTHING to contribute. I’m sorry if you had a bad experience with surgery, but you’ve made that known in lots of posts about it already....
Yes Andrina I’ve seen all your negative replies throughout the forum...
I’m on my third day of IV solumedrol 60mg. It has definitely helped, the frequency has been cut in half, I went 8 hours today without a poo, although they are still watery and bloody. Far cry from...
So I’ve only had 5 BMs today since midnight so frequency decreased for sure. My last two were separated by a good 6 hours. When I went, it was still D but just seemed like more blood. Do you guys...
Does a 3 day course of IV steroids seem too short? Tacrolimus and cyclosporine sound interesting. I texted my doc about it. Thank you guys!...
Right, but I may not have the luxury of time to see if remicade works at all then try another med. it all depends on how much the IV steroids contain the current situation and if the oral steroids...
Well yeah I’d like to try other meds but if the oral steroids don’t keep things suppressed I won’t have the luxury of time....
Update: got my second solumedrol dose today 60mg. Only 4 BMs in 24 hours! Still D with blood though. Plan is to do one more dose of IV solumedrol tomorrow then put me back on 40 of pred. I’m really...
Thanks iPoop you’re the best! I mean that!...
Xeljanz is still pretty new right? It’ll be interesting to see how long people stay in remission on it....
Also, are you on aza or 6mp with the remi?...
IPoop you mentioned in previous posts that you’ve had some small flares while on Remi. What did you do about those? I have no mesalamine options and steroids don’t seem to work. So just move up the...
Admitted. Military is different, the doc here is ok with my plan. I’m retiring soon so thought getting surgery while I’m still active duty would be beneficial. Yeah I’ve seen anywhere from that...
I guess they think the IV stuff will jumpstart things. Hopefully I don’t go too cray on them :) iPoop - why specifically is remission via bio preferable? With surgery at least there’s peace of mind...
I’m just afraid of the remi losing effectiveness then I go right back into a full-fledged flair requiring hospitalization, steroids, and not having having enough time for another bio to work....
So I’m getting admitted for IV steroids since oral hasn’t done anything. Can’t do entyvio as it takes too long. They are going to start me on remicade and hope for the best. Long term, I’m worried...
Yeah I thought about that too :) Was just hoping since this was my first time on it that it would work quickly. I don’t know what’s going on and just losing hope....
Asked my doc if I could go up on pred dose but they want to keep me at 40 for now. Ugh....
That’s what mine was set for. I still haven’t had much change, hope you do well on it. I’m just so discouraged since most people on here said they saw results within a few days. I’m going on a week...
It’ll be a week tomorrow. Can a 10mg bump make that much of a difference?...
Sara could it be that it’s just a bad flare and I need maybe a week to see improvement? My last poo was reassuring, I hope it stays that way. FG I’m on uceris foam which doesn’t seem to help. When I...
Last night sucked, D with dripping blood. However, I just had a more formed poo with minimal bleeding this am a couple hours after my pred dose. I wonder if I should split the 40 into two doses, take...
Day 5 today, BMs cut in half, usually go 10x so far only 4x. However, when I do go it’s still D with some blood. Should I still count this as a positive response and just keep on with the 40mg dose?...
At what point should I ask to bump up from 40 to 50mg? After a week? Frequency is down today, but still D with some blood....
Well today was day 4, still same frequency wise but maybe a little less bleeding overall. I felt like I had a bit more energy. Thinking that day 5 will be better!...
Yeah I think as a whole, people are doing well on the bios. As has been repeated many times before, most people that are doing well on them likely drop from the forums since they are out enjoying...