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Resection - pneumonia - anemia - c.diff

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Crohn's Disease
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Posted 6/23/2016 12:09 AM (GMT 0)
Well - I have had a lot of firsts this year -
My first bowel obstruction lead to my first surgery ... They removed 1ft of my colon and 1ft of my small intestine. After surgery I came home and found out I had pneumonia(first time ever having that) .. Once I recovered from that found out I had my first yeast infection! Yay! I was getting really tired at week 6 post op and had some labs taken and ended up getting admitted with a hgb of 5.8 - that lead to my first blood transfusion! After getting home from a two night stay to get my hgb up to 7.2 ... I took in a stool sample to find out I now have c-diff, that's a first also! I just stared in flagil today ... It seems to give me a sick feeling. I always am positive about everything and currently having a this sucks attitude... Can't wait for things to start looking up. I have a very supportive husband and two darling little kids that are getting me through. Any advice on c-diff... How long will my symptoms last? I'll talk any advice, support or suggestions ... I'm just kinda feeling 'down'

Also - I was suppose to go back to work at week 8; 1.5 weeks away. My doctor said he will go week by week and send me back to work when I hgb is higher ... How high would you make sure it is before going back?
Posted 6/23/2016 12:20 AM (GMT 0)
For the cdiff I would start taking Florastor or another probiotic with the same yeast strain. I would continue the Florastor for weeks after you finish the flagyl to stop a recurrence.

For hemo I would make sure at least 9. At least for me 9 was when I would start to feel less exhaustion . under that everything was just so exhausting. My hemo was a constant issue and I've had more blood and iron infusions than I can count!

Finally after my final surgery my hemo is at 11.8. I have so much energy I don't even know what to do with it. It has been at least 5 years since I was over 10.

I hope you kick all these firsts and get back to feeling well!
Posted 6/23/2016 2:13 AM (GMT 0)
Hi Sweetbabyray,
Sorry for all you are going through. I had c.diff after my re-section surgery too and it took me a long time to realize what was wrong. Are they attributing the anemia to the c.diff, or did you lose a lot of blood with surgery? What medications are you taking for the c.diff. I had recurrent c.diff even after a month of Vancomycin and ended out needing a fecal transplant, which I think, cured it finally. As far as work, don't go back till you're ready if at all financially possible. You have been through so much. And btw, while I had active Crohn's I used to think that 11 hemoglobin was doing well but now that I'm in remission, my normal hemoglobin is 13. 5.8 is pretty terrible! you must have felt awful!!
Posted 6/23/2016 3:03 AM (GMT 0)
Thank you both for your reply.

I did feel awful. I knew something was wrong when walking up the stairs I had to sit at the top step because I was so winded. I just started the antibiotic today for the c-diff.

Just so frustrated.

Thanks again for replying to me
Posted 6/23/2016 5:09 AM (GMT 0)
Oh man! This is tough.

What meds are you on aside for flagyl?

In my humble opinion flagyl is not a great option for flaring IBD patients. It doesn't work quite often and causes lots of sumptoms that you don't need.
It's possible insurance wouldn't approve vanko without you trying flagyl first but it does a much better job of getting rid of c. Diff. There are other options as well.

Do you see a hematologist? It might be a good idea. You need to get hemaglobin up but taking PO iron might irritate things.
Slow fe taken every other day should help (and won't be too severe on GI tract)
If you are willing you might want to try feraheme infusion they can also give you epo (a hormone that stimulates blood cell production)
To help the new iron make more blood cells.
Good luck!!
Posted 6/23/2016 5:46 AM (GMT 0)
Dikid - I'm taking flagyl for the c-diff just started the pills today. I'm currently taking 2 iron pills a day by mouth. My gi is having me get iron infusions once a week until my levels get to a normal range. Not sure if I'll continue the pills then or not?! I have seen a hematologist in the last but haven't seen him for a while. My GI Doctor is handling thing... Would you suggest to see a heme also?

Are you a nurse? :) never heard or feraheme infusions. Also, what is fe everyother day??

Thanks for your response. So nice to get other opinions / suggestions.
Posted 6/23/2016 9:28 AM (GMT 0)
Fe is iron

I second taking Florastor for c. diff. It is pricey, but it is the most effective probiotic out there for battling c. diff. It is yeast based as opposed to bacteria based, so the flagyl won't kill it off the way it does most probiotics. I suggest taking 4 per day while you're on flagyl, as well as a week afterwards. Then taper down to 3 a day for a week, then 2, etc. The take 1 per day all the time as a maintenance dose. Once you get c. diff., it is extremely easy for it to come back again, even without taking antibiotics again.
Posted 6/23/2016 11:48 AM (GMT 0)

sweetbabyray said...
Dikid - I'm taking flagyl for the c-diff just started the pills today. I'm currently taking 2 iron pills a day by mouth. My gi is having me get iron infusions once a week until my levels get to a normal range. Not sure if I'll continue the pills then or not?! I have seen a hematologist in the last but haven't seen him for a while. My GI Doctor is handling thing... Would you suggest to see a heme also?

Are you a nurse? :) never heard or feraheme infusions. Also, what is fe everyother day??

Thanks for your response. So nice to get other opinions / suggestions.

If you get bad symptoms from the flagyl tell your doc... Not all do but it's good to know there are alternatives.

What kind of iron tablets- different forms of iron are absorbed differently and some may be more or less irritating.

Feraheme is a type of iron infusion-I really like that one becuse it's easily absorbed and they can do a high dose in one infusion. It has a very low rate for infusion reactions. I got that kind of infusion and it was great.

I am not a nurse but I am starting nursing school In a couple weeks. (already finished my prerequisites)

When I mentioned taking slow fe every other day I wasn't clear. Slow fe is a brand of iron tablets, they are ferrous sulphate which is absorbed pretty well and the pill is formulated to be slow release so it is less irritating.
really good studies have shown that taking iron every other day instead of daily is a good idea, but talk to your doc before you switch it up
Posted 6/23/2016 11:58 AM (GMT 0)
Sorry things have been a "windfall" for you... I can't speak to c-diff as I have never been diagnosed with it. I can say that flagyl does do a number on you when you are taking it....I was sluggish and groggy on it at first taking it...add that to your anemic issues and I can see where you would feel blech. It also tends to give a metallic taste in the mouth which was not pleasant. Your doc can adjust dosages to get to less side effects if they think the lower dose would continue to be effective for you.
That being said, it really worked on the infection in my fistula. I just had to stop because I was one of the lucky ones to have a neurological side effect from it...they tried a lower dose and I still had it so I can not take it any more.
After hearing scifi and gumby's stories these last years, I really feel for anyone with c-diff. I hope things heal quickly for you and take it easy easing back into the working world.

Take Care
Posted 6/24/2016 2:06 PM (GMT 0)
I'm so sorry to hear that you're having such a rough time. I really feel for you. I was in the hospital for a month and a half and also had my first resection in April. Definitely not fun. I have had C-diff in the past and was put on Vancomycin. I felt much better within a few days of being on Vanco. I was originally admitted to the hospital because of an abscess. I was on a TON of IV antibiotics. After all was finally said and done, my GI put me on Flagyl for a month until I was able to start Humira again (had to wait 4 weeks after surgery to start Humira). The Flagyl was to "keep everything at bay" while I was healing (is my guess). The Flagyl can definitely make you feel sick, not to mention the taste is HORRIBLE. Try eating something before you take it. I still did not feel well overall when I was on it, running to the bathroom many times, bubbly stomach, etc. Anyway, I hope you feel better very soon and hopefully once you are off the Flagyl you will feel much much better!! Keep your head up, this tough time will pass!!!
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