Background TMI and recovery questions

Since c-diff is a disease of the "lower half", so to speak, we find that many of our members cannot refrain from discussing what comes out the bottom end. If you must do it, please do it here.
mitten28
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Background TMI and recovery questions

Postby mitten28 » Thu Jul 19, 2018 12:48 am

First of all, sorry for the TMI descriptions below and for the wall of text, I tried to keep it concise but it ran away a bit! And a big thank you to everyone on this site, it's been so reassuring to read, you really are superstars!

Background:

29 year old female - good health in general
Work in a non-clinical role but am in hospital setting every day
Previously had what I think was c.diff after round of Augmentin last year - resolved when abx stopped
This time - no abx use since December, hospitalised overnight 3 months ago (dehydration).

Timeline:
- Early May had sudden onset of bad smelling watery D multiple times a day, appetite loss and feeling generally unwell, this continued for a few days, went to the doctor who did not test for c.diff. but gave me probiotics. D stopped after about a week but still had no appetite and no energy, excessive thirst, brain fog, fast heart rate, anxiety and head pressure feeling.
- Later in May, things kind of improved for maybe 2 weeks, still low appetite, no watery D but bowel movements not normal.
- June 1 had some major work stresses and then had a recovery (?) set back and started feeling poorly again and had (sorry!) mushy yellowish stools with some M no B with urgency and anxiety always as soon as I woke up; then sometimes a bit of constipation. Went to doctor again and at this point no one knew what was going on with me and was having anxiety, chills, nausea, no appetite with gagging feeling and muscle twinges and continued to pass these types of stools but only a few times in the morning; Went to the ER a few times and blood work, urinalysis etc came back fine, abdominal xray also fine. Within a week stabilised and improved after this episode.
- By June 12 was eating a bit more, not a lot of appetite but no gagging feeling and no nausea, could stomach chicken and broccoli and green juices, (sorry again!) stool had since firmed up and turned green (probably because my diet is pretty green), still in the morning but not so immediate. Was referred to a GI who tested for parasites (negative) could not test for c.diff because no D. GI referred me to ID doctor.
- Early July, was feeling a bit better, no longer have chills or acute anxiety, still going only in the morning but stools of various consistency, but no D, went to the ID doctor, he said that he had a few cases like mine and that it was likely c.diff - he didn't test me though because he said I am improving and he is of the mind to not treat unless the watery D returns or if I feel severely unwell again.
- Now,I've lost 9kg since this started but my appetite is coming back slowly, don't really get hungry like before I got sick but will want food and I can eat 3 small meals throughout the day, no dairy or undercooked veggies though or I get gurgling and will need to go a couple more times the next morning. I'm taking saccromyces boulardii and going to introduce more probiotics and different foods into my diet slowly.

I guess I'm wondering if this sounds like recovery? I definitely think I have post-recovery IBS based on what I've read. My hunger not returning yet is concerning me a bit... I was also a bit hesitant to post since I wasn't tested and now am untreated so not sure if this is okay to post here, but I felt and still feel really in the dark, especially during that time in early June which felt like a relapse - maybe from a spore from my initial infection? I really am afraid of feeling that way again. I know people can recover on their own but since I was never tested or treated I feel really unsure in my recovery. My ID specialist is great but very much of the "go slowly and it will recover in time" mindset for my case, which is fine by me but just wanted to check my story with the knowledgable people on this site....Meanwhile, I'm trying to focus on what I feel in the moment, and not wonder if it's going to suddenly get bad but sigh, some days that's a hard task as I'm sure you all know so well. It's been 5 weeks since things "firmed up" and my other symptoms are slowly slowly improving (or not returning) and I take heart in that.

beth22
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Re: Background TMI and recovery questions

Postby beth22 » Thu Jul 19, 2018 1:15 am

Hi mitten28 and welcome to the site. Please read the first forum for more information for new posters.

If I were you, I would get a regular stool culture done to see if you have any other pathogen. If that comes out negative, then it may be c difficile. I had c difficile the year prior to getting formally diagnosed and it went away on its own. I ate yogurt (you are taking probiotics). You might try kefir. Some posters have said that it helped them. If you do get D, then you can always test. Hopefully, you are on the mend.

mitten28
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Joined: Wed Jul 18, 2018 10:59 pm

Re: Background TMI and recovery questions

Postby mitten28 » Thu Jul 19, 2018 1:41 am

Hi Beth! Thanks so much for the reply :) I forgot to add in to my massive post - when the GI doc tested for parasites he also did a full stool panel that came back all clear for other pathogens, also I had a stool test at outset that came back all clear, but at that time they didn't test for c.diff. I've got the c.diff sample container at home just in case D comes back, hopefully it remains unused!

I will definitely be trying out kefir soon!
- Liz

Kuro
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Re: Background TMI and recovery questions

Postby Kuro » Mon Jul 23, 2018 10:28 pm

If it helps you at all, I will be 5 months out on the 12th and I have a similarly weird diet. I don't get hungry, but when I actually eat, I realize that I do have an appetite and want the food. At first (while on Vanco), I would sometimes even get nauseous while eating and that has gone.

Sounds like you are gradually improving, as the ID specialist said, so I hope that continues for you!

mitten28
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Joined: Wed Jul 18, 2018 10:59 pm

Re: Background TMI and recovery questions

Postby mitten28 » Tue Jul 24, 2018 5:59 am

Thanks Kuro that is helpful and exactly it! This has been such a rollercoaster, I've never had appetite issues before so this symptom really freaked me out with its persistence!! it's good to know others have similar appetite issues. A few weeks ago I also would get nauseous while eating (except I wasn't on Vanco) or would really feel like it was a slog to get through a small meal, this is improving slowly, especially at dinner time. All the best with your recovery!

NanciT
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Re: Background TMI and recovery questions

Postby NanciT » Tue Jul 24, 2018 9:33 am

Nausea can continue on and off as well as appetite during recovery which can take awhile. I used "Sea Bands" for a very long time and still use them on and off. They are a simple set of wrist bands you can get at most drug store that have a pressure point. They worked better for me then the anti nausea meds.
If it continues, you may want to try them. I keep them in my purse

NanciT

mitten28
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Joined: Wed Jul 18, 2018 10:59 pm

Re: Background TMI and recovery questions

Postby mitten28 » Wed Jul 25, 2018 5:14 am

Thanks NanciT, great suggestion! I've used them before on boats so may be time to pick some up!

mitten28
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Posts: 6
Joined: Wed Jul 18, 2018 10:59 pm

Re: Background TMI and recovery questions

Postby mitten28 » Tue Jul 31, 2018 7:49 am

Not sure if this is allowed but an update:

I was still feeling really poorly and starting to backslide a bit, even less appetite, tenderness, some tenesmus, having some M and the smell is strong, so I went back to the specialist and he ordered a PCR test as well as a calprotectin test. Waiting on the results now. Will be so good to find out what is going on, this feels like it's gone on forever even though it's "only" been 3 months.

beth22
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Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Background TMI and recovery questions

Postby beth22 » Tue Jul 31, 2018 11:49 pm

Let us kow the results. Hopefully, it is not positive. So sorry you have to deal with this.


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