How is everyone doing? checking in

I wanted to take a moment and ask how everyone's UC symptoms are: whether you're flaring, simmering, in remission and out enjoying life! A lot of us post to help others and don't often say how we're doing, ourselves. Might be encouraging to others to know that some of us are living the dream, or know others are struggling too, just like they are!

I'm 5 months post-pred and wishing I was in a true remission again (while being on a butt load of meds), and am not a patient person haha. I vary between 1 and 4 bms a day (averaging 3), all formed and early in the AM with no real urgency (I can hold it a while), but with blood on tp randomly appearing every 3 weeks or so which is a bit perplexing, with a series of really good days, followed by a series of really bad days. You know the typical UC emotional rollercoaster ride, I'm getting better, oh crap I guess I'm not afterall, oh wait things are getting better now, and mix and repeat in syndication. Call it simmering but very mild inflammation with good but not perfect CRP and FCP scores. Seeing my doctor in another month and will ask about shaking things up again to see if we can get me back into the promised land of remission. Holding tight and hoping for the best!

Thanks for your update ipoop! I've been wondering how your UC was doing. Thanks for always being here for us with your knowledge and calming rationale.

I have a simmering lingering inflammation too. I've had my 3 loading doses of entyvio and its been 7 weeks since then. My next dose is next week and I'm really anxious to see if it pushes me into total remission I'm having 2 formed BMs a day. Some days I have a bit of mild cramping or a dull pain in my lower left but no mucus or blood. And I still have low energy and tiredness. But my appetite is good and I'm gaining weight. And I can have coffee again in moderation! Overall its good! Oh! And I'm off prednisone! Using Canada at night and uceris foam in morning.

Post Edited (FlowersGal) : 6/14/2017 10:20:03 PM (GMT-6)

Well 3 a day doesn't sound too bad. I'd take that, so long as I am not darting to the toilet.

For me, I am the same, no meds, not focused on UC at all anymore. Going more than normal people, but it's quick, painless, not urgent. Can't complain!

I have been going between feeling great and simmering since January. Stress seems to kick my colon into fussy mode for sure. May was a great month, no issues what so ever but the past few of days my Sigmoid has been aching and I've had mucus again. Going 1-2 times a day, although mostly 1. Going to to up my rowasa to nightly for a week and see what happens. On 4 lialda still as well.

I am much better. Considering i was two days away from losing my colon and now i have two normal BM's a day and no blood i feel very fortunate. My only real symptoms is some urgency and nasty growling in the my lower colon. The remicade is obviously working and my trough levels are good.
My CRP has risen from below 1 to a 4 but my GI and I think that may be related to all the competitive cycling i do. The training adds to general inflammation. I was never sick prior to remicade and in the last month have had both the stomach flu and chest infection but hey, i guess it is worth it. Must say i am very grateful but still very apprehensive that the disease will return with a vengeance.

Hi. Still in a flare. Have been since Feb. Some good days and some bad. Just started prednisone. Started with 30 taper to 20 etc. you all know the drill. I'm hoping this will be my magic drug to put me in remission. Third day of taking it and BMs have been fewer but still with some blood and urgency. (5 to six BMs versus the 8 to 10 so far). You're right it is a lonely disease but I have gotten over feeling sorry for myself. I sure had a few self pity parties. When I found this forum it made things so much better in my life. My husband is terrific but nothing like having others who are going through it or who have gone through it. A GREAT big THANK YOU to all of you!!!!

The past year has been such a roller coaster for me.

Last July I was hospitalized for the first time due to a flare. Over the next 2 months I was hospitalized 3 more times due to not being correctly treated at first, and later due to tapering too quickly on pred.

I went from 155 lbs. to 130 lbs, and then shot up to 177 lbs. The pred. kept me out of the hospital, but I looked terrible, felt terrible, and became depressed. I got oral thrush, folliculitis, and c-diff between August and October.

I started Remicade last October and responded very well to it. I was able to come off pred., and I considered myself in remission since I had 0 UC symptoms. I began working out and bettering myself. By January of this year I had lost all the pred. weight, and began training to run my first 5K.

In March I noticed some blood returning in my stool. This terrified me, but my doctor just thought it was a small hiccup, and thought it would correct itself.

By May I was into a full flare symptom-wise, and eventually went to the ER near the end of the month. Back on pred. for me! I also lost a lot of energy, so no more 5k. I'm still running when I can though. Don't want to lose what progress I have made.

I'm on a much lower dosage of pred. this time, so hopefully the side effects won't be as bad. I had a flex sig. done which confirmed I am in an active flare (no surprise) with moderate to severe inflammation. I've been waiting for 3 weeks to get my Remicade antibodies test back because my doctor and I have been playing phone tag. We just can't seem to get in touch!

If it turns out I have built up antibodies to Remicade, I'm considering trying Simponi next. If anyone reading this has tried it, let me know your results. In the mean time, I've began taking Isatis Cooling supplements. It seems to be helping reduce my bleeding and number of BM's, but I don't think it's effective enough for me to go without pred. completely.

I'm hoping to get all this behind me because I've had to quit 2 jobs, and drop out of grad school due to this year long ordeal. If another biologic fails me, I will highly consider a colectomy if my doctor thinks it will solve everything. I'm only 24 and don't want to play this game with UC for the rest of my life.

Thanks for reading.

Last few years my UC has become unresponsive. I am on that roller coaster too. Last year was REALLY BAD. I had adverse drug rxns to Anacort and prednisone, which has NEVER happened with pred. I think something else was going on b/c now I tolerate pred.

Wow, what is a formed BM like???? That is a very long ago memory for me LOL

I go 10-15+/day.

Doc just put me on 40 mg pred and took me off Lialda, and wants me to contact him in a week. Had liquid and an accident this morning. I have been up 2 hours and gone 5 times, with the accident.

He wants me to try entyvio infusions. Now my insurance has to be encouraged to allow this. if not, I will have to pay out of pocket. :-(

Used to be I would get on pred and it would miraculously "cure" it right away. Does this mean pred is also becoming useless?

I feel good though. I love the way pred makes me feel haha lots of energy and all

With the masses of help and support I have received from this forum and in particular ipoop (who managed to guess my exact diagnosis and likely meds again exactly ) I am now in remission and back to my own self again apart from a strange experience of purple Urine today which now believe to be pentassa reacting with bleach.

This forum is a life saver

I've been enjoying a little ovet a year of solid remission with only some lower left side pain and light blood when wiping from what my dr thinks is a nasty little hemorrhoid.

BUT today, after closing on a new house We left for vacation and wouldn't you know...6 hours into the trip I've had a few pretty urgent emergencies. I'm hopeful it's a fluke and I just over indulged on salad. I can't seem to digest roughage lately.

Always love to hear from everyone and offer/get support as needed.

That sucks, Kulinarykidz. I love my salads, so I feel ya. It is so hard at times having UC and people don't understand. I have people saying to me - eat more fiber, eat more plants - they just do not get it that fiber can be the enemy during a flare. One friend sent me a layman's article that said he went with all plant-base diet and it "cured" UC. She said...you can cure it!I am sure glad to have found this place of fellow UCers.

Been flailing for quite some time with 20 plus BM per 24 hr period.
Sure felt very depressed not being able to go far unless close to a bathroom.
Just spent a week in the hospital where they started me on Humira and it sure has made a huge difference.
So far down to about 4 Bm per day.
Hope things continue

zarch said...

Kulinarykidz said...
I've been enjoying a little ovet a year of solid remission with only some lower left side pain and light blood when wiping from what my dr thinks is a nasty little hemorrhoid.

BUT today, after closing on a new house We left for vacation and wouldn't you know...6 hours into the trip I've had a few pretty urgent emergencies. I'm hopeful it's a fluke and I just over indulged on salad. I can't seem to digest roughage lately.

Always love to hear from everyone and offer/get support as needed.[/quo

Traveling always seemed to aggravate my UC when in remission, but it usually calmed down after a day or two. Hopefully that's the case for you! I also have to watch my salad intake.

I think it was definitely the salad! Getting back to normal now and enjoying some island time. Thank you!