Discharged today from VA Hospital

I have been in the Dallas VA Hospital since August 1st as my colitis went bonkers over 15x a day with zero control factor. 11 days...this is the longest I've ever been in a hospital bed so this bowel disease is serious in treating time-wise. It took them 4 days just to slow down bowels discharging to 7-8x a day. Colon exam showed I had severely raw inflammation all in the lower tract of colon. First two medications before failed me so now being discharged with another 6-weeks round of steriods starting at 60 mg. and now I'm on TOFACITINIB 1 OMG Oral tab. Has anyone here been on this med? Like to get some feedback. I was on Renflexis infusions before but that didn't work out unfortunately and neither did Humira initially. Any advice on this new medication or anything else close to it is most welcomed......I hope to never need to go back to the hospital again even though they treated me great. Feeling normal again.

Post Edited (WayneTX) : 8/11/2023 4:14:32 AM (GMT-8)

That is great news....gives me hope......thanks for the insight........hope this one is the winner!

WayneTX,
I'm glad you are out of the hospital and doing better. There have been many successes with Xeljanz. I hope it works for you. My neighbors daughter is on it now and she took is in remission.

It's very hot in the Dallas area....that's close to where I am at.... The heat makes me more prone to flares and feeling ill, Prednisone (or any steroids) make the heat impact me even more. Try to keep cool.

Clo

yes......they have me on Xeljanz taken twice a day and also back on PREDNISONE at 60 mg. this week for 5 days then tapering down 10 more mg. after 7 days and thereafter. Good to know many have gotten good results on this med. Does it matter on when taking Xeljanz as long as one in the AM and the other PM? The Steroids fire up my appetite so another issue now involved - weight gain. It got so bad I had to go on average every 90 minutes around the clock. I am much better now so it was worth the 11 days. Colon exam diagnosed I was severely inflamed (raw in spots) in the lower half of my colon.

Was in exact same position as you. In hospital with a severe flare on IV steroids, high dose tablets etc before. Nothing controlling the flare then was put on Xeljanz/Tofacinitib. Got discharged from hospital and slowly over 2/3 weeks went into remission. Have now been in remission roughly 2 months and now finished my Pred course. Only on Xeljanz twice a day, plus Mesalazine now. Good luck.

Got an open QUESTION to everyone........my med (Tofacitinib) is definitely working.........but I have had side effects going on now for the past 3-4 days.........persistent cough day and night, slight sore throat, minor night sweat.....no fever.....this all actually started before my leaving the hospital but very little.......has anyone gone through these side effects after just starting? It is not the Pred. as I have been on it before so it is definitely the new med. Any advice.......should I report these side effects today to my Doctor today or see if it just goes away on its own? Catch 22 because the med seems to be working but with side effects.

Post Edited (WayneTX) : 8/12/2023 5:44:03 AM (GMT-8)

Not had those side effects.....I was also going to ask if you might have covid...

really don't believe I have covid but nurses did tell me they had a covid patient in my hospital wing but I was restricted to my room so the only way I could have got it would be through hospital staff contact. My persistent cough has calmed down some today and short throat is better than yesterday so that's good. Wife gave me some Ivermectin. I am going to see how I do tomorrow......if still lingering in side effects come Monday notifying VA.

Post Edited (WayneTX) : 8/12/2023 8:19:31 PM (GMT-8)

thanks for all advice........the side effects from the new med or from whatever is much better now so I'm not going to report it to VA tomorrow. Ivermectin seemed to make a difference. Still not having full form stools....still mushy float......but now not going but 5-6 times a day and no panic-stricken urges. The around the clock nightmare of runs has stopped. I'm not happy being back on a Pred. taper but I'll do whatever to avoid another hospital stay. Assuming it will still take some time to see consistent daily stools again due to inflammation still there. I'm taking it easy this weekend and staying out of this awful Texas heatwave. So good not being hospitalized and recovering at home.

WayneTx,

You have been really ill and I believe there's damage to your intestines. The healing timeframe is individual. I would advise you to not rush the lowering of the Prednisone and to follow your doctors recommendations. Everyone wants off Prednisone. The issue is, If you taper too quickly will you have additional damage to your intestines? If you stay on too long what other health issues might be caused? It's very important to have a good GI and to have him advise you on this. Dr. Dassopoulos GI Specialist and Dr. Warren Lichliter Colorectal surgeon in Dallas are exceptional doctors. (Just in case you are in that area in Texas) Regardless make sure you have a GI that you can talk to that really listens to you... And one that you can really listen to. It's important to be compliant on your medication and if it's causing issues to contact your doctor for possible alternatives.

I will be your worse case scenario. Your experience should be better than mine was. My disease is rated as aggressive severe UC and Crohn's. Sometimes that rating can improve, mine hasn't. My impatience has sabotaged my healing correctly.

I got sick in 2012, diagnosed in 2014, started Remicade/Methotrexate/Prednisone in 2015, and I had an emergency colostomy in 2016 due to scaring and narrowing. I was on Prednisone doses of 80mg a day for a very long time before we decided to taper at 5 mg a week. I have not had "normal" stools... except occasionally...since I was diagnosed. I did not stop having urgency until the colostomy...but pre colostomy we were able to get my bathroom trips down to 4 to 5 times a day and 2 to 3 during the night. I stopped having immediate accidents of 8 to 10 times a day. I was starving all the time on Prednisone, I was edgy and moody. I gained weight. I have not gotten the weight back off.

When I went off Prednisone - symptoms would return and I would usually have more ulcers the next time. (We were doing scopes every 3 to 6 months at first) My GI believes that back and forth ulcerations could have caused additional scaring but it's difficult to determine because everyone heals differently. I can tell you that I was not patient and would try to speed up the tapering schedule. I was compliant with my medicines but may have not realized that I was feeling as bad as I was... (It took years for me to realize when I was in trouble... and as such my GI may have thought I was doing better than I was. I'm a "shake it off" type of person. I only said I was not ok when I went septic once and when I had to have emergency surgeries.... And even then I think I told them I was ok...) So I may not have taken Prednisone enough times or long enough to actually get the inflammation down so the healing could take place. I wish now that I'd been a little more patient.... But hindsight is 20/20.

Talk to your doctor, be very very graphic about how you are really doing...and see what he thinks.

I hope you feel better soon.
Clo

I'm glad you are doing better.

You've gone thru a lot too. Remember that and try to cut yourself some slack.

I understand how edgy Prednisone makes you. I took up video games and games on my cell to try to keep my mind occupied. I organized and cleaned. Read books. Tried knitting and crossstitch....lol... (hey, I was desperate) It helped very little.... But it was worth the try. I cleaned like crazy. I painted the inside and outside of my house. To try to watch what I was eating I also made batches of chicken bone broth with well cooked carrots and celery and sipped on that. (My issues were the Lays potatoes chips and Ginger Ale I used to help with nausea... And the noodles... Darn carbs) The worse part was trying to sleep. My eyes would pop open or my legs would suddenly start moving. I was a mess.

The sore throat... I don't think I ever got that. When I read up on Prednisone it indicated that was a side effect though... Be sure to watch your fluid retention and check your BP weekly. It did impact that with me at times. If you start running a fever, retain fluid or your BP increases too much make sure to call your doctors emergency contact.

BTW... Did your GI do a bone density test yet? Mine did it so we'd have a base to compare to.... It's something to talk to your doctor about.

Hang in there!
Clo

I think it is working too so that is good.....woke up again with sore throat and hungry........yesterday was a mixed bag.......small little stools twice and then mushy two other times.......ughhh......I agree it will take time........as for bone density GI has not brought that up but I have already been diagnosed with osteoporosis. I'm trying to stay busy and occupied but the pred. part is the monster........snacking healthy but the volume level remains constant. I assume you know your healed from the inflammation when you can go a week or so and all normal sized stools?

Thanks for that explanation Flower Girl.......I am definitely expecting too fast results much faster than reality.
Where you able to get off steroids for most of that 6-9 month period. The Pred. at 60mg is really messing with me making me gaining weight, sore throats, and being edgy with others. I don't like it but I guess it comes with the Terriority of getting this under control.