Tearfully angry- failed abx treatment

So I'm venting....

Little background:

Pre-triple abx treatment...going 4-6 (mostly 6) times a day all formed, no other symptoms except urgency....that controlled everything. But never went after 7pm so could socialize, gym etc. Had a return to work plan for 2 evenings a week after not working for 3 years. Generally felt well but lots of planning around bowel, panic attacks due to urgency. March scope said mild UC...in sigmoid/rectum. Lots of scarring but best results I've had in years.

I have 3 GI's following me and felt that trying a triple abx treatment would get me into remission, get me back to work and have a full life.. Well let's just say they were wrong!! Epic fail!!

they were flagyl, gentemicin and rifiximin. Immediately following the start on June 2 bowel deteriorated, c-diff likely and I'm a mess. I've cancelled a wedding this weekend I was in to a substantial financial loss, have missed out on a cottage trip etc etc. Now my urgency is literally 3 seconds!! I've stopped abx last Sunday....gas and bloating and d are main issues. I look 4 months pregnant, have tried every gas remedy....really not eating because of pain. As far as bowel....running 5-6 times within 1.5 hrs of waking. If I take imodium just to do errands, the gas pain becomes worse.

I'm P'od big time. Diapers are hot and frankly don't go with sun dresses, my previous empty social calendar has been getter much better where with a ton of planning (up at 5am to empty and an imodium I could go hiking) is now a distant memory.

All I wanted to do was go from 6 to 1-2 a day. Was that too much to ask?? I'm so much worse off and am longing for 4 weeks ago when I was the best I've been in years. I was a driving mad woman this morning trying to get groceries without pooping myself. Sorry Costco lady...I don't care about your membership when I'm wearing diapers and trying not to poop myself in your line.

Like seriously people. this has got to be the worst disease on the planet. I'm fed up and don't think I can consider going back to work...again.....

I'm trying to schedule a double IVIG for this week....hopefully an extra one will calm things.

If I can get stable again and return to 6 normal, I may just have to live the best life I can. Trying something new doesn't seem to work for me.

If the gas wasn't so bad I'd have pizza and ice cream tonight. Abstaining hasn't seemed to have helped, so why not?

End of rant.

Post Edited (U B Tough) : 6/26/2016 11:08:26 AM (GMT-6)

thanks for listening NCOT. Nope not great but I was grateful that those were my only symptoms and I wasn't going 40 times anymore! So for a while I just did the best I could and enjoyed life even though every move I made surrounded my bowel.

I had a very strange reaction to Entyvio last July....extreme weakness, flu like symptoms when again I wasn't supposed to have any. I seem to be very "special."

I tried the triple abx because I tested positive for MAP antibodies; combined with my PG. The other option was stay at 6 times or try Stelara. Abx was cheaper, easier and short term. Before starting my GI confirmed my symptoms wouldn't get worse, I'd only get better. I was beyond excited to try it and went into it with a positive mindset....

Never confirmed c-diff. I gave up asking about FMT's years ago....there's no one in Canada (Toronto) doing them that my GI could find. Funny you mention it, I was thinking about it this morning.

He was following another protocol from John Hopkins about a patient with similar circumstances as myself. Since then this doc has used this combo on another 5 patients; most doing well, none it seems with my reaction.

Frankly, I can't be bothered getting tested. I should have 3 weeks ago but my GI never suggested it. Very likely that the flagyl has got rid of it as I have no other symptoms for c-diff. Today I'm just angry and sad at the same time. I want the beach, not bathroom.

Other than an extra IVIG, I'm not sure what to try next or even if I should. Sigh:(

C-diff can come back. I agree with the others, get another test. If it's c-diff maybe you could try vancomycin.

I think you should get tested for c diff again, and if you get negative, try again. You never know. I am really sorry you're not doing well. It's very, very frustrating and disappointing. I am sure the IVIG will do the trick, it seems like it's always been a great option for you so let's hope it will be this time. I know, here in teh US< it's really difficult to get your doctor to approve it for UC. I would have definitely tried it. I tried everything i could before surgery.

Thanks you guys. I know I'm tough and I've certainly been through worse. I'm just depleted. I was expecting to get better and specifically voiced my concern about getting worse. Had I known there was a tiny, tiny chance of getting worse I wouldn't have done it. Not before the wedding and certainly not in the summer. I don't think the airline will reimburse me for my flight and of course my beautiful gown can't be returned.

I did the abx for 21 days; supposed to be 30 but couldn't go on.

As far as c-diff, I'll pass on getting tested for now. I don't think I could do the drive and I don't think I'll touch another abx ever!!

I'm so upset

Your doctors should have warned you of this possibility, but I haven't come across a doctor yet who does warn their patients of potential side-effects. It's like they feel obligated to be as upbeat as possible. I suppose there are professional reasons for that, but it's boring to be taken unpleasantly by surprise by side-effects you weren't expecting - I've had that happen to me a few times. I feel much the same way about mesalazine that you do about antibiotics: I will not touch mesalazine with a bargepole from now on.

So sorry about that.