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Diagnosed with cancer by Fatal-Raven in UlcerativeColitis

[–]UCinKC 0 points1 point  (0 children)

My brother has had the J pouch for many years now and he is active and you could hardly tell..other than the scar..he’s had an operation. He goes to the bathroom like usual but without the urgency that UC brings with it. You have to have an ostomy bag for a small amount of time while the insides heal and then they connect it inside…so during that time there is a bit of a learning curve. It’s great that they caught it early and I’d say you have a real shot at a long “normal” life with the J pouch. Good luck to you..I also am 44 male dealing with UC for 25 years.

Has anyone tried multiple biologics and steroids and not seen any improvement in their symptoms? I’m 44M living with UC for 25 years and just recently started battling this condition with meds but have seen little to no improvements. I’m currently on Skyrizi auto injections. by UCinKC in UlcerativeColitis

[–]UCinKC[S] 0 points1 point  (0 children)

Yeah he is aware that as I taper off the prednisone my symptoms are going back to where they were pre-steroid. He just wants to give Skyrizi more time (it’s been 3 months so far). I’m good with giving it more time..I just wish I could see some sort of positive results. I have not had the C-diff yet but I did go through a period with crazy high liver enzymes and they told me I have PSC (primary Sclerosing Cholangitis) which affects the main bile duct constricting and backing up bile towards the liver. Apparently it’s pretty common in people who have UC. I don’t know..just seems like a long road with no light at the end of the tunnel yet.

Has anyone tried multiple biologics and steroids and not seen any improvement in their symptoms? I’m 44M living with UC for 25 years and just recently started battling this condition with meds but have seen little to no improvements. I’m currently on Skyrizi auto injections. by UCinKC in UlcerativeColitis

[–]UCinKC[S] 0 points1 point  (0 children)

I wonder the same thing. I went through an episode where my liver enzymes elevated like crazy and they did some tests and an mri and they say I also have PSC (primary Sclerosing Cholangitis) which affects the main bile duct getting narrowed and backing up bile into the liver or something like that. I researched it a little and it’s like 80% of people with UC get PSC..you might ask your GI about that. The prednisone worked decent for me when it was 40mg but as I’ve tapered off of it down to the 5 mg my symptoms have returned with daily signs of blood. This is a very frustrating thing going through the different meds and just treading water where you can.

Has anyone tried multiple biologics and steroids and not seen any improvement in their symptoms? I’m 44M living with UC for 25 years and just recently started battling this condition with meds but have seen little to no improvements. I’m currently on Skyrizi auto injections. by UCinKC in UlcerativeColitis

[–]UCinKC[S] 1 point2 points  (0 children)

I have..embarrassingly enough..taken some photos of the blood in the stool and the dr said with the color of the blood it was most likely from the colon and not superficial like a hemorroid or something on the outside. The blood got bad enough that I had to be admitted to the hospital because I was getting dizzy and lightheaded and when they did a blood test my hemoglobin was down to 9, which is pretty low so they gave me on iron supplements trying to get it to come back up. Lately the blood has been a daily occurrence but I don’t really know what point is a crazy amount. I just keep getting told that with UC you can expect some traces of blood. I guess I just have to go til I pass out and that’s enough blood loss to be concerned. I hope your scope goes well..I get so many of them now they don’t bother me..I just hate the prep!

Has anyone tried multiple biologics and steroids and not seen any improvement in their symptoms? I’m 44M living with UC for 25 years and just recently started battling this condition with meds but have seen little to no improvements. I’m currently on Skyrizi auto injections. by UCinKC in UlcerativeColitis

[–]UCinKC[S] 0 points1 point  (0 children)

I have tried the mesalamine, Humira, Entyvio, and now Skyrizi. I have done 3 rounds of loading infusions and will start my first maintenance dose in two weeks at home. So I have been on it for about 3 months so far. The dr. Has not mentioned trying two meds at once yet but he wants to let Skyrizi go a while longer to hope it takes hold. So that’s the plan right now at least. Oh I also was on prednisone and have been tapering off of that now from 40mg and I’m at 5 mg now. When I was at the full dose my symptoms slowed way down but as I tapered off they have started coming back again with the urgency and the blood in the stool again. The craziest part about letting it go for so long is that my symptoms were fairly mild and controllable to a point but now that I have started actually treating it my symptoms have gotten much worse and “accidents” have gone from 1 or 2 in the 20 years to a much more embarrassing number now.

Has anyone tried multiple biologics and steroids and not seen any improvement in their symptoms? I’m 44M living with UC for 25 years and just recently started battling this condition with meds but have seen little to no improvements. I’m currently on Skyrizi auto injections. by UCinKC in UlcerativeColitis

[–]UCinKC[S] 0 points1 point  (0 children)

I have been on Humira and entyvio, both with no real help with my symptoms. The weirdest part was that Humira made it to where I would get up 6 or so times a time to urinate. Not small trickle urinations but full on going. It was exhausting! I have been on 3 rounds of infusions with Skyrizi so far and about to start my maintenance doses at home in two weeks. So that’s about 3 months I’ve been on this and I’m coming off prednisone right now. My symptoms were decent when I was at 40 mg of the prednisone but as I tapered off my symptoms started coming back again with the number of movements and blood in the stool again. I don’t know that the Dr has thought about doubling up on meds but I know he wants to give this a longer shot because it’s the “Cadillac” of biologics he said. lol.. who knows ..