Flaring while on a good amount of meds to start off- HELP

So I have finally come to terms that I am having a mild flare. BMS are up from 1-2 a day decent size bms to 4-5 small, skinny suckers with blood mixed in. I am also having some abdominal cramping and lots of smelly gas as well.

Before this all started I was already on 8 Salofalk per day, 1 4g salofalk enema at night and vsl 1 packet daily. I would really like to know how a flare made it past all those meds :(

I have since added one more salofalk tablet per day and a salofalk suppository in the am. Not seeing any results yet but I want to be patient and see if I Can get over this without any steroids.

Here are some questions I have regarding this latest flare:

1. IF this is not a flare and it is internal hemmies causing issues- would that cause an increase in bms and thinner stools? or would it just be blood?

2. usually in the morning after doing a salofalk enema, my gas may smell really bad..i think its the enema because that smell only started when i started doing them a couple months ago. IT would only be in the morning until I had a bm and then no more smelly salofalk gas. BUT NOW, I have these salofalk farts all day long ??? Is it possible that salofalk is not being absorbed right now and that is why I seem to be flaring??

3. I called the GI I went to see for a second opinion and he said he doesnt think this is a big deal. He said that when he looked at me a month ago things looked great and thin stools are nothing to worry about..even ribbon like stools mean nothing he said..????????????????? He said thats just the muscle and sometimes stools will be different shapes? WTH is he talking about..I think he is WRONG. Not going back to see him again either.

4....and finally..is it possible I have overmedicated myself and that is why I am flaring now?

I have continued to do the enemas nightly even though I was fine..I planned on tapering them this weekend to every other night but now i dont know what to do anything..

I know these are alot of questions but they are all very valid to me. I hope I can get some different insights.

Yes I know I have had alot going on with surgery and Im on my period now and whatnot but this seemed to have been brewing up for a couple weeks now before all of that.

 

Krissy...it's as you say, lots of stuff going on. Stay with the enemas at least for another week to see how you do then. Most of the health crisis issues will be over.

Yes, hemmies and stress/IBS can cause thin stools because of contracted anus...but with blood and increase of stools I'd say that you're also starting to flare....as a reaction of all the above, including hemmies.

If you can say that you've had no crisis, you've been of calm mind and had no other health issues....it would be more of a surprise.

Maybe adding a steroid enema into the mix might help instead of the Canasa.

Yes, Salofalk farts are stinky, but worse when flaring.

quincy

quincy said...
Krissy...it's as you say, lots of stuff going on. Stay with the enemas at least for another week to see how you do then. Most of the health crisis issues will be over.

Yes, hemmies and stress/IBS can cause thin stools because of contracted anus...but with blood and increase of stools I'd say that you're also starting to flare....as a reaction of all the above, including hemmies.

If you can say that you've had no crisis, you've been of calm mind and had no other health issues....it would be more of a surprise.

Maybe adding a steroid enema into the mix might help instead of the Canasa.

Yes, Salofalk farts are stinky, but worse when flaring.

quincy

I was scared for the surgery but did not see it as a huge crisis..the day off was horrible and the two days following as well. I hope the percocets had nothing to do with this. Cant be though..I have it written down that MAy 1st I really started feeling OFF.

I would like to know what the hemmies have to do with anything..like do they "flare" up ? do they ever go away?

I think I mentioned before..I flared last may..right around this time..maybe its just my time....

Im scared. Dont want to go down this road again. Upset that these meds I have been faithfully doing have failed me now.

 

Q- you sound like you really believe stress causes flare ups..just like some pple think its food..

I would think you are under medicated at this point. If I were in your shoes I would start with hydrocortisone enemas to see if I could get a handle on things now. You obviously need a GI who is pro active.

Rod

Krissy, yes, I had a big blip then. I was on 4.8 grams of Asacol and the 4g enema daily. I upped my VSL and that really helped me out.

I know you don't want to hear this, but I still think it's a good possibility you're starting to flare because the Humira is leaving your system. Sure, it didn't keep you in a perfect remission, but once you added the enemas in (and were you taking the oral Salofalk when you were on Humira?), you got better. But the key is that the Humira was still in your system. Now that it's working it's way out, you're starting to flare. It's possible you'll be able to get it under control by upping the oral salofalk, upping the VSL#3, or adding steroid enemas. Really, with UC, who knows?

oh krissy, this road we have been on post pregnancy really sucks! I feel like it is so tough to re gain remission after pregnancy. I think the best advice is to up your salofalk and VSL. And I still think a colonoscopy is needed. I know you are anti-scope but if it's been a while it may be good. I had mine last Wednesday and we now have a clear picture of whats going on. I dont have to guess. At the very least you should see your GI.

I wish we could just get better and enjoy the summer with our families!!!

FWIW, I went into flare while doing my 16 Asacol per day and nightly Rowasas, around Christmas.... it took Cortenemas to get out of it. But Christmas is one of "my times" annually, whatever that means. So, unfortunately, for me, the 5-ASAs don't seem to completely keep me under control. I'm sure they help a lot, because in my doc shopping a year ago, each GI was very surprised that I'm on such a "low level" of meds for the amount and duration of disease I have. So - I'm sure the Christmas flare would have been horrible if it hadn't been for all the 5-ASA. And the same could be true for you - this seems like a relatively minor flare for you at this point.
The goal is to nab it now and turn it around!

Q, the "stress and distress" - words I will ponder; that seems to be a key for me. Thanks for putting it so well!

And...icing piping - LOL!!!!! I can hardly wait to see my GI's face should I use that expression in front of him....!

hi krissy,
well at the start of the scope the doc says "theres nothing here, no problems..." Then as he goes further he noticed some mild inflammation. When it was all over he said that there was about 25-30cm of mild inflammation left side (i guess thats sigmond). That is the exact same results of my first and only scope 7 yrs ago before i went into remission. He then said, "why are you on so many oral salofalk?" He took biopsies to confirm what he saw and we have an appt on june 10 to discuss meds etc. He said that we may start enemas and lessen the orals BUT I know that I dont want to lessen the oral 5ASA's. I would like to start the enemas and see if they help. He credited the suppositories to the fact that my rectum was completely normal and I credit the 5ASA's with the fact that the disease has not spread in 7 years. I stayed on the salofalk for all that time, I did decrease for some yrs to 6 per day but that was b/c I would forget to take the 3rd dose.

Anyways, my main symptom is still just cramping and its in a weird spot, upper area. We did blood tests, ultra sounds, colonoscopy and all everyone is telling me is to take Zantac!!! I am going to ask for an endoscopy at the june 10 appt.

So, my results actually helped me feel better about my situation and know now where we should go from here. Before mt scope I was thinking 6mp etc but now we'll try the enemas and maybe play around with different 5ASA's.

I dont think there were any adverse reactions to my UC from the scope. I used PICO SALAX prep which is the only one i will ever use. Very easy to take and gentle too.

How are you doing now?

Kweeks sounds good..I was told the same thing about my rectum..normal..and more looked normal just above that as well. I think I may have some inflammation just above the sigmoid and that is why I may actually increase the orals as I dont think the enemas can reach that far up..
I am going to call into the GI who just did the flex sig and get him to send his exact findings to my family doctor or directly to me. I want to see it in writing.
Today I am doing ok. I am back at work since yesterday and back to my usual daily routine which was all messed up last week..maybe that has something to do with all this..who knows..
I have gone twice today..both were loose and skinny bms with blood mixed in. My feeling is that the issue is a big higher up. The cramping I am having is across the transverse and more to the left.
Thats why I am wondering if 12 salofalk that got me outta my first flare may do the trick.

I had D last night. I also have no problems at all holding in the enemas, no urgency at all no rectal pressure or pain..just loose stools and cramps higher up. I HAVE to be inflammed higher up. I did two VSL yesterday and will start with that for now. before upping my Salofalk to 12. My GI always said 12 was the magic number even though it was high it seemed to help almost instantly in my first flare.

I am trying my hand at 2 vsl per day now..albeit the more expensive route if I can do it without increaseing the rx meds, I will.

quincy-
whats the difference between salofalk and pentasa?