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Posted 4/21/2014 4:40 AM (GMT 0)
Hello!

I'm new here. I'm gonna try and summarize the past 10 months in a concise way. Just looking for some support, reassurance, wisdom, guidance.

My fiancé was diagnosed with severe pancolitis last June and we've been battling ever since. He was doing okay (on pred and imuran x 2-3 mos), but still in a constant flare until he got c-diff right before Christmas. Ever since then, things have been awful to say the least.

He's been off work since then. He originally lost about 25-30lbs. Since Christmas he's lost another 20. He's been pretty consistently on prednisone the entire time. He is just now fully tapered - but not without consequence. I think he's having withdrawals. Nausea, loss of appetite, depression. The pred was never really the miracle we were hoping for. He didn't ever experience much relief with it. Even at 40mg. He was so sick with c diff that in February he was finally admitted to hospital. They did IV steroids for a few days, rehydrated him, started remicade and sent him on his way. Since then he's had two negative stools for c diff. So that's positive. What isn't positive though, is the state of his disease. His diarrhea and urgency issues are about as bad as they've ever been. There are positives I suppose, albeit hard to see. His blood and pain is much better. Are we safe to assume the ascending and transverse colon are perhaps healing? Who knows. His doc wants to do another sigmoid in May to see what's going on. His doc seems to think he's going in the right direction, because his CRP is the lowest its ever been (1.4 I believe, where it was 24 in march, 28 in Feb and 100s when he was first diagnosed). But unfortunately, his symptoms are telling a different story. On a typical day he goes at least 10+ times in 24hrs. He never sleeps because he's up all night with diarrhea. His tenesmus is horrific.

He also has never been able to tolerate rectal meds. And he can't make it to his iron infusions because they're 6 hours long and he couldn't even dream of leaving the house at 7am.

He's tried and failed mezavant, salofalk enemas, pentasa enemas, cortifoam enemas. Right now he takes VSL #3 (which he's considering switching to something else because he's doubting its effectiveness and the fact its so expensive), vitamin D, tumeric, dicetel, imuran 150mg, and remicade q8weeks.

His doctor seems to think he may be suffering from "post c-diff irritable bowel". Anyone ever heard of this? We're just so so so frustrated, at the end of our rope. I'm starting to think surgery is on the horizon but then again he hasn't tried simponi but I think that may be next.

I just wonder how much longer he can go on like this.

Starting to lose hope a little bit. :(
Posted 4/21/2014 6:50 AM (GMT 0)
Hi reflektor,

First let me say, as always, I'm sorry you and your fiancé have to go through this. This an awful disease and I've come to joke that having it come into your life is like being stuck in an episode of Lost - very rarely do you get any concrete or definite answers, only more questions and unknowns.

I can't help much with the post c. Diff issues he might be having. When I had c diff (which really is a cruel monster in and of itself especially on top of UC) it was after being in the hospital for three weeks just as a flare was beginning to improve. Then I got terrible again from the c diff and once the antibiotics ran their course everything had cleared up - the c diff and the flare. So it's hard for me to offer any advice on that. But I have heard that even people with healthy colons can suffer from IBS post c diff.

What I can offer, as far as the colitis goes, is that one of the important things to use to measure his "improvement" is how he is actually feeling, along with the clinical findings. A lot of the time we know whether medicines or treatments are working, regardless of symptoms. During my most severe flares I knew when the steroids weren't having any affect on me even though some of my white blood counts were coming down. Transversely, I knew another flare was coming when I was sleeping differently and my bowel habits were having the slightest changes even though I had a flex sig that showed no current inflammation and a lot of old scarring had healed.

The question of how long he can go on like this is really up to him. If he feels like there is an answer for him out there, or some combination of medicine then keep searching for it. Research, ask questions of you doctor, and if you don't like the path he or she is taking you by all means look for another.

But again it all comes back to your fiancé. You've said his symptoms seem to be improving in some ways. That's great! Does he actually feel like he's getting better? Do his current symptoms feel any different then before (perhaps indicating post c diff issues as opposed to the UC)? I learned just from listening to my body that I could usually tell the difference pretty early on from a UC problem or an oncoming flu or cold issue, even if the symptoms were similar.

Whatever comes your way just know that help is out there in some form or another. This is a tough journey but hopefully things will start turning around for the both of you soon. Stay strong!
Posted 4/21/2014 7:33 AM (GMT 0)
Have you talked/researched about Remicade/Humira?
Posted 4/21/2014 7:36 AM (GMT 0)
A hospital stay and Remicade is what finally has me moving in the right direction. My stool is not pure liquid diarrhea anymore since the remicade. And my urgency ans frequency have improved. As well as a little pain.
I still have days that randomly suck, in the last 13 days about 6-7 days I had atleast 10 bms. But im getting my energy back too.
tmrw is my second infusion.
I hope to see even more drastic changes. and im expecting this from a SECOND infusion... not two + months of it... i dont know how hes still surviving. My illness also started in june, steroids dont work for me, i cant take rectals and i got c diff in february.
If remicade wasn't working id be heading for surgery.

It all depends on how your fiance feels. Sounds like he has lost A LOT of weight. If I lose anymore I start being underweight... and im borderline malnourished and constantly dehydrated... id imagine he must be too??
My body cant take much more of this UC. I hope his can if he is willing to try Simponi... but I would have given in by now ans gotten that evil colon out!

Good luck in whatever you guys decide to do.
I just hope he doesnt get worse and then have to rush into surgery decisions.
if I have surgery I want it on my own terms and to be somewhat healthy, so as to lessen complications/help recovery.
Posted 4/21/2014 1:30 PM (GMT 0)
You mentioned c-diff and then future negative stool tests but didn't mention any c-diff treatment (antibiotics). Surely he must have been on them? Obviously what he's doing just doesn't seem to be working much. If I were a doc I would be wondering about c-diff again.
Posted 4/21/2014 1:52 PM (GMT 0)
I second gary's thought C-DIFF is treated by antibiotics, and you mention none of them. Where you prescribed Flagyl (Metronidazole) to clear up your C-DIFF? I ask because C-DIFF and UC symptoms are exactly the same, and testing is needed to determine which you have. Based on what they find you get either antibiotics (Flagyl for treating C-DIFF) or UC meds (often steroids such as Prednisone) to get better.
Posted 4/21/2014 2:04 PM (GMT 0)
Sorry forgot to include that. He did a 2 week stint of flagyl with no success. Then a long taper (I can't remember how long) of vanco. It seemed to clear things up as he had 2 negative tests since then. But he did one in the Hosp in Feb and one shortly after that. So really he hasn't had a c diff test for 2 months.
Posted 4/21/2014 2:19 PM (GMT 0)
How many remicade infusions has he taken, you said started in feb? And what was the dosage given, e.g., 5mgs per KG or 10mgs per KG? Usually one can tell if remi is working by the 3rd or 4th dosage. Remi can be taken at 10mgs per KG if he is at the lower dosage.
Posted 4/21/2014 2:30 PM (GMT 0)
Firstly I just wanted to thank you guys for your insight. I'm going to work this morning so my responses may be short. When I come home from work I'll address things more completely.

For remi, he's had three doses. The last was approx 4 weeks ago. I'm going to assume he's on the lower dose. We didn't talk dosing with his doc (it just hasn't come up with everything else he's been going through).
Posted 4/21/2014 3:14 PM (GMT 0)
My GI has mentioned using the Prometheus Blood Test on me the next time I flare up. The goal is to check for Remicade Antibodies, if present then the idea is switch to Simponi or Humira. If no antibodies are found, the idea is try another class of medications since the Anti-TNF class of medications has clearly failed. There are some options Vedolizumab (an anti-adhesion-based drug) or XELJANZ (a JAK inhibitor).
Posted 4/21/2014 4:05 PM (GMT 0)
Hi, sorry to hear your fiance is struggling, have you thought about changing your doctor, the fact that your doc states "he's going in the right direction" is a bit worrying, as clearly he is not, many people do change doctors and with good results....it may be something to think about.
Posted 4/24/2014 3:26 AM (GMT 0)
Well, this changes things a bit.

We found out today he's c diff positive again! Back on the vanco! I'm partially very relieved. Just knowing that the majority (or all) of his symptoms could be attributed to having the infection again.

The weird part is, did it just never go away? Or did he somehow reinfect himself? We were so careful with cleaning...

I'm thinking we'll start saccharomyces boulardii too. I've heard this is good to take for c diff and can help prevent recurrances. Am I right in assuming its safe to take with colitis?

PS. I was considering seeking another doc's opinion but for now we'll just treat the c diff and go from there. Also, remicade antibodies. I will keep that in mind if be continues to flare.
Posted 4/24/2014 3:51 AM (GMT 0)
if c-diff comes back a 3rd time, try FMT.
Posted 4/24/2014 4:47 AM (GMT 0)
Just wanted to chime in on this one. I tested positive for c diff last December. First time i've had c diff, in my 20 years of UC. At first, I couldn't decifer the suttle differences between the two. Now, after 5 months of battling with it I know some of the differences. And that may not hold true for everyone.

The point I wanted to make, is that at first my GI thought I had a UC flare and C Diff. So along with the Flagyl and Vanco, I was given a high dose of Prednisone. Which at the time was fine with me. When I was released from multiple hospital stays, and still not getting better, the doc wanted me back on biologics. Long story short...the last 5 months I been dealing with all of this, turns out I didn't have a UC flare at all. It's been this awful c diff. I took months of Prednisone, and almost went back on biologics because my GI couldn't even decifer between the two. The Flagyl and Vanco get my symptoms under control within weeks, but it just comes right back. So now I have to do FMT, which I wish I would have done right away.

So if the typical UC drugs don't seem to be working...your fiancé might be in a similar boat as me. A very resistant strain of c diff that a normal coarse of Flagy and Vanco just won't take care of. Before hitting the hard UC drugs, make sure he has eradicated the c diff completely, or he could be taking all those harsh UC drugs for nothing.

Best of luck!!
Posted 4/24/2014 11:18 PM (GMT 0)
FMT is on our minds for sure. We have to figure out if it's available here.

UC42 - not that you intended it to, but that scares me. Just the fact he's been on imuran since October and now remicade since February. Not to mention pred since July basically with no break (and he's finally weaned off that now). There really isn't a doubt in my mind that he does have UC... But it has crossed our minds that maybe he's had to progress to biologics unnecessarily. Which breaks my heart... But on the other hand, I'm trying to remind myself that things progressed this way for a reason. And we can't go back. I mean... If things continued down this path, he'd have a colectomy by summer. The crapty thing is... He's on remi for good now. Ugh its a depressing thing to think about.
Posted 4/25/2014 12:33 AM (GMT 0)
Didn't mean to worry you. :) The thing is...his UC may not even be that bad, or managed by some of the safer maintanance meds., but if the C Diff is tearing his guts up the GI may fail to see that it's the C Diff and not the UC.

My GI would've started throwing every UC med. he could at me, and I wouldn't have got any better, as long as the C Diff was still thriving. I just hate to see someone who has only recently been diagnosed with UC jump to the harsh meds. and loose hope that his UC is not responding...when the C Diff could be the culprit.

I would suggest really REALLY pushing for stool tests. And even if it comes back negative, maybe wait a week and get tested again. Then he can concentrate on his UC and see what works and what doesn't. Throughout my 5 months with C Diff, I have had just as many negatives as positives. C Diff is like a stealth ninja...no joke. Lol!!
Posted 4/25/2014 2:17 PM (GMT 0)
Hi sorry you and your fiancé are having such a terrible time :(

I was exactly where your fiancé is now.
I was told that my infectious colitis has now caused ibs.
They told me because of the infectious colitis it has now made my nerves in my bowel extremely sensitive which is making me think that it is my ulcerative colitis but In fact it is ibs.

He has told me to try normacol in the morning for 4-6 weeks
1 tablet inner health plus probiotic a day for 4-6 weeks
Endep 10 mg to help with the spasm and pain for the nerves.


I wasn't overly happy to believe him that this is the case as I was still getting the same symptoms that related to my uc.
I thought I will give this a good go and see if it is ibs so they can't say I did t try it.

So from what I have been told YES you can have ibs caused from infectious colitis.

Good luck I hope you get some answers soon. If you feel your partner is not getting any better keep going back until your get the answers you need and he starts to be on the mend :)
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