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Posted 8/8/2015 2:08 AM (GMT 0)
For anyone following my story and or wants to give feedback..

It's been almost 2 months now in this flare, in and out of hospital, no improvement while on 2 doses of remicade, entocort, occasion rectal meds, and a week +2 days of IV steroid

Right now I'm been in the hospital for a week and two days now on IV steroids, an oral steroid (entocort), and two infusions of remicade in my system. The steroids haven't done much for my colitis although it has relieved a severe dry cough I was having , fevers, throat pain and a lot of the blood I was having. As far as the colitis itself I haven't had a decent bowel movement since the flare, a lot of constipation with slight diarrhea and stomach cramping/gas. They tried tapering me off of the IV steroid and in that same day I had symptoms coming back (cough, fever, more blood) so they put me back up to original dose which I believe is 40mg three times a day.

Monday they will be giving me a remicade infusion which will be a week early then when I was supposed to have it, 10mg instead of 5 this time and they are gonna continue the high dose of steroids and keep everything the same. They also told me today that they're gonna have a GI surgeon come in and talk to me, not that I specifically need surgery but it's obvious I don't respond to medication the way most people do so it'll be a consultation. Seems like I could be in here for another week or two? Idk but it's frustrating waking up everyday with no improvement while being on all these drugs. I can't eat right either so they just hooked me up to a nutrient IV , I've lost about 45lbs since the flare (no exaggeration). Any advice or hope for me? Is it possible the remicade can turn things around on Monday with the increased dose? Also when something does come out in the bathroom it's usually little hard pebble size stool and a little liquid, is the pebble size hard stool a sign of SOMETHING forming in there? This has been a nightmare, but thank you for listening or following my story.

Post Edited (You-See) : 8/7/2015 8:13:08 PM (GMT-6)

Posted 8/8/2015 2:44 AM (GMT 0)
Thank you so much Alice, I'm glad your increased remicade dose helped you turn things around. I'm depending on Mondays infusion to do the same although I rather not depend on it but I almost have nothing else to lean on at this point. How soon after the dose did you improve? Next day, next week?
Posted 8/8/2015 2:58 AM (GMT 0)
Wishing you the best. Remicade may kick in but if it doesn't you may wind up better off getting surgery and putting UC behind you instead of living misearable for years or even decades. It might not seem like it now but maybe it will all work out for the best.
Posted 8/8/2015 2:59 AM (GMT 0)
Wow, 45 pounds weightloss is a LOT!

The pebbles shows your colon is slowing down as it's healing...probably more focused in the rectum now, but with lots of inflammation.

How often are you going? compared to before you went in?

Does sound like a nightmare. Hope things kick in after Monday to get you to turn that corner to feeling better.

q
Posted 8/8/2015 3:06 AM (GMT 0)
I'm really sorry you're going through this. You've been through hell and especially being the hospital is just the worst.

Why are you on Entocort and not prednisone? Entocort is usually used for Crohn's not UC. Maybe something in the Entocort is the problem? Or it's releasing the medication in the wrong place in your body?

I did a quick search and found this page with a table comparing side effects of Entocort vs. prednisolone (like prednisone) and the patients on Entocort had a lot more side effects, some similar to what you have.

http://www.rxlist.com/script/main/mobileart-rx.asp?drug=entocort&monotype=rx-ad&monopage=4

Also, push for another c diff. test. Some people have several false negatives before being diagnosed. Or you could have caught it in the hospital and its preventing the steroids from working.
Posted 8/8/2015 3:15 AM (GMT 0)

quincy said...
Wow, 45 pounds weightloss is a LOT!

The pebbles shows your colon is slowing down as it's healing...probably more focused in the rectum now, but with lots of inflammation.

How often are you going? compared to before you went in?

Does sound like a nightmare. Hope things kick in after Monday to get you to turn that corner to feeling better.

q

I'm not running to the bathroom all day, but I'm also not eating much either, prior to the steroid I'm probably going the same amount but when I do have an urgency it's nothing of substance. Typically it's abdominal pain (gas), straining and pebble/some liquid type stool but not much of it.
Posted 8/8/2015 3:21 AM (GMT 0)

kiptyn said...
I'm really sorry you're going through this. You've been through hell and especially being the hospital is just the worst.

Why are you on Entocort and not prednisone? Entocort is usually used for Crohn's not UC. Maybe something in the Entocort is the problem? Or it's releasing the medication in the wrong place in your body?

I did a quick search and found this page with a table comparing side effects of Entocort vs. prednisolone (like prednisone) and the patients on Entocort had a lot more side effects, some similar to what you have.

http://www.rxlist.com/script/main/mobileart-rx.asp?drug=entocort&monotype=rx-ad&monopage=4

Also, push for another c diff. test. Some people have several false negatives before being diagnosed. Or you could have caught it in the hospital and its preventing the steroids from working.

Is a c diff test done through a stool sample? I haven't given one stool sample since being in here. Also what are the symptoms of C diff?
Posted 8/8/2015 3:34 AM (GMT 0)
I recently had surgery and while it's a difficult procedure, I have been doing whatever I want since a few weeks post surgery #1. I went on a weekend trip and I went swimming. I've been going out, hiking, going to restaurants, eating whatever i want... I am not going to paint this perfect picture of life with an ostomy, it is a challenge to learn what works for you and there are considerations to having this thing, but on the other hand, it's really not that bad when you're comparing it to a life impaired by UC. I have no pain. It takes me 10 minutes to get up in the AM. No more on and off the toilet for hours. I get up, go once, shower and go on with my day. So far, I am thankful I made this decision. I didn't really have many other options but I wish I had done it sooner - if i had known things were headed here, i would have done this years ago. I haven't taken a prescription medication in weeks, it's amazing!

c diff is a stool test. symptoms are similar to UC. People say you can smell c diff.
Posted 8/8/2015 3:36 AM (GMT 0)
Yes, a c-diff test is done with a stool sample. Never had c-diff myself but from what I've heard and read it is like a really bad case of UC. If you have UC then it can sneak up on you without knowing because you just think it is a really bad flare.
Posted 8/8/2015 3:44 AM (GMT 0)

notsosicklygirl said...
I recently had surgery and while it's a difficult procedure, I have been doing whatever I want since a few weeks post surgery #1. I went on a weekend trip and I went swimming. I've been going out, hiking, going to restaurants, eating whatever i want... I am not going to paint this perfect picture of life with an ostomy, it is a challenge to learn what works for you and there are considerations to having this thing, but on the other hand, it's really not that bad when you're comparing it to a life impaired by UC. I have no pain. It takes me 10 minutes to get up in the AM. No more on and off the toilet for hours. I get up, go once, shower and go on with my day. So far, I am thankful I made this decision. I didn't really have many other options but I wish I had done it sooner - if i had known things were headed here, i would have done this years ago. I haven't taken a prescription medication in weeks, it's amazing!

c diff is a stool test. symptoms are similar to UC. People say you can smell c diff.

Good for you! Curious as to why you haven't considered the J-pouch procedure and stopped at the bag? Any reason for this? If I get surgery I would have to be guaranteed the 2 step j-pouch procedure.
Posted 8/8/2015 4:10 AM (GMT 0)
i am just on step one of three. I wanted 2 too but it wasn't possible for whatever reason. :( I was upset but it's just my luck...
Posted 8/8/2015 6:10 PM (GMT 0)
Wait what??? When did you have surgery Notso??

Sorry to hijack the thread You-see.
Posted 8/8/2015 7:06 PM (GMT 0)
the day after my first remicade infusion, i was a completely different person. i had just been diagnosed a week before and had just gotten out of the hospital. i was really sick for a month before being admitted. i wasnt eating, bloody movements, always tired, i lost about 30 pounds in less than a month. after the hospital i was feeing a little better and beginning to eat, but after the infusion i was eating much more. sending lots of luck your way! dont forget to update us!
Posted 8/8/2015 11:06 PM (GMT 0)
You-See - don't give up hope. Things can turn around. I started a bad flare in March, rounds of steroids followed that I didn't respond to, down to 105 pounds (I had already lost so much weight from this disease that there was nothing left to lose), 2 hospital stays, 3 rounds of remicade infusions.....endless! I looked like a skeleton by the time I left the hospital.

The third remicade infusion is when things started to turn around for me. Not miraculous. I am down to about 10 bowel movements, just a few drop of blood, formed stools (sort of) and lot less pain. Every day things get a little bit better.

You may need some time for the remicade to work. It is good you are educating yourself about surgery but I still think things could turn around for you.

And I will say this again....you need something to manage the pain. IMO, managing pain makes a big difference in your ability to keep down food. (I kept vomiting with every bowel movement due to spasms/pain.) Yes, pain killers are just masking the symptoms but sometimes you need that just to handle each day without feeling beaten down. Did you ask about tramadol? I take it nightly to sleep. Just 50mg a day. One little pill and I am off to happyville. Sleep helps you heal!

On a side note - Notsosickgirl - you are the most stoic person on this board. I don't remember you ever mentioning surgery? It couldn't have been that easy.
Posted 8/9/2015 2:45 AM (GMT 0)
These are some symptoms of c diff
Bloody/mucous/ yellow/ string/ explosive bms
Horrible smelling bms and gas. Fever. Cramping. Incontinence after a few days.
Posted 8/9/2015 1:42 PM (GMT 0)
They lowered my dose of IV steroid from three times 40mg a day to three times 20mg a day. This is despite me getting better but I do have a remicade infusion on Monday for 10mg and it seems like everyone is leaning on that to help turn things around, if that doesn't do the trick it'll be quite troublesome and left with a sense of hopelessness considering all of the outlets attempted. Right now I'm nervous about the steroid taper and other symptoms coming back (fevers, blood, cough, sore throat) all problems that the steroid helped me with (just hasn't helped with my colitis directly). Anyways, fingers crossed for tomorrow
Posted 8/9/2015 3:29 PM (GMT 0)
Have you been able to try rectal meds like cortifoam yet? It will actually help with the steroid withdrawal in addition to your UC. If you are having too many bms they don't prescribe it cuz then the meds end up in the toilet.
Good luck
Posted 8/9/2015 4:43 PM (GMT 0)
I also agree with the steroid enemas to help with systemic steroid tapering.

thanks for the update. Hope the Remi gives that extra boost to finally healing from this flare.
q
Posted 8/10/2015 3:28 PM (GMT 0)

sherbear46 said...
Wait what??? When did you have surgery Notso??

Sorry to hijack the thread You-see.

Yeah, she did but didn't tell any of us here on HW, just on Facebook. Still wait for the story and details, and her to update her signature :-)
Posted 8/10/2015 5:21 PM (GMT 0)
You-See,

Your story sounds a lot like my first flare. I lost over 50 lbs in about 90 days; I was all skin and bones, people didn't recognize me. The first hospital (local hospital) that I was at did not do any stool tests on me (and I was so new to it that I didn't know to ask to be tested for c.diff).

I was so sick at the time they told me that Remicade would not work in time for me and they shipped me to a University Hospital (best thing that ever happened for me and my UC) for either Cyclosporine or surgery. The Cyclosporine worked within a few days and got me into remission in about about a month. I added 6-mp as the maintenance drug and I was off of Cyclosporine in 3 months.

I finally had surgery last year (after battling UC for about 9 years), if I could do it all over again then I would have had surgery during my first flare and put this all behind me.

The decision is yours (meds or surgery), my only suggestion is that to make sure that your at a great hospital that specializes in IBDs. I have my doubts about your hospital if they haven't given you a stool test in 10 days.
Posted 8/10/2015 9:43 PM (GMT 0)
Thanks iPoop :)
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