Long time lurker - please help :(

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alex77
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Re: Long time lurker - please help :(

Postby alex77 » Thu Aug 04, 2022 10:41 pm

Hi again everyone,

SO.

After the colonoscopy, they didn’t find any signs of C.Diff which I guess is a good thing??? That either (to me at least) means the Dificid worked and it’s gone and now I’m dealing with residual symptoms from the infection itself/Dificid.. OR that means I somehow never had C.Diff in the first place even though I had two positive toxin results??? Regardless, they did find some redness & irritation in my colon which they took biopsies of so hopefully I’ll know the actual answer once those come back.

They also ruled out Crones, Ulcerative Colitis, & Colon Cancer. Which I’m thrilled about. Just stunned they didn’t see the little yellow bubbles that C.Diff leaves everywhere in the colon. I’m trying to look at this in a positive way though so I’m just gonna keep taking the Dificid till I get my results back.

I will keep everyone updated as I go. Thank you all again.

alex77
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Re: Long time lurker - please help :(

Postby alex77 » Thu Aug 11, 2022 10:02 am

Hey everyone, me again lol.
Just got my colonoscopy biopsy results back - no colitis, chron's, or ulcerative colitis was found (thank God). So I'm assuming that means C.Diff wasn't found either if that's the case since it's basically infectious colitis. This makes me wonder if the Dificid completely did it's job & now I'm just suffering with the after effects of the infection. Crazy part is, a giant chunk of my symptoms have pretty much disappeared since the colonoscopy... which is very weird to me but I'm wondering if it like flushed out the remaining bacteria or something??? I don't know, either way I'm glad I'm feeling a little better & don't have any kind of extensive stomach issue from all this. I just want to feel 100% again. Regardless they're going to set up a follow up & I'm going to push for an endoscopy just for haha's because the pain at the top area of my stomach still comes & goes & no one has been able to give me a reason for that just yet. Thank you for listening & I will keep you all update as I go through this mini nightmare :').

GtrGrl
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Re: Long time lurker - please help :(

Postby GtrGrl » Thu Aug 11, 2022 12:25 pm

Funnily enough I have heard of other people feeling much better after a colonoscopy. It could well be to do with flushing out some potentially lingering bacteria or toxins. Glad you seem to be on the mend and no damage seen.

I’m in the upper GI pain club (although also RLQ), so will be interested to hear how you go.

beth22
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Re: Long time lurker - please help :(

Postby beth22 » Thu Aug 11, 2022 4:32 pm

A GI told me that many feel better after colonoscopy because it does flush out toxins, etc. Maybe that is what happened to you. Whatever it is, glad you are feeling better.

alex77
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Re: Long time lurker - please help :(

Postby alex77 » Tue Oct 25, 2022 12:30 pm

Well everyone - I'm Back :').

So I have re-tested for C.Diff through Quest Diagnostics about.. 5 times now since October, & every single time it has come back negative (other than the GDH antigen coming back positive one time early on, which is expected). But no matter what I do, I cannot escape the PI-IBS symptoms.. or at least that's what I hope they are. There are days, even a week here & there, where I feel fantastic. BM down to 1 a day, formed, can eat with no problems before/during/after. Then there are days like today & yesterday that I have no explanation for. Yesterday I had bloody mucus (sorry for the TMI) about 10 times by itself.. & according to my doctors that is from hemorrhoid's/proctitis due to what C.Diff did to my insides... and that's fine I'll take it, as long as my C.Diff tests come back negative I can deal with it. But then today... I woke up with that terrible stomach pain I have gotten many times in the past followed by nothing but D & M. It'll last for about 2 hours & then it stops & my stomach will slowly go back to "normal" during the following days. Is this common with PI-IBS? My doctors (all 4 of them - no joke) literally have zero explanation as to what causes me to have bad days like this still. I'm currently taking Levsin & 1 50 Billion Bio-K Plus probiotic capsule a day, I don't know if either one of those could be contributing. If anything I would think the probiotic is causing this more than the Levsin. Either way, I just dont understand how I can be doing so good and then just take such a huge step backwards out of no where. It's also making weight gain next to impossible. I'm sitting at a lovely 115. Any advice/recommendations are hugely appreciated & thank you for reading my novel.

Alex.

BetsyS
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Re: Long time lurker - please help :(

Postby BetsyS » Tue Oct 25, 2022 8:43 pm

Have you tried eliminating gluten? I've had 3 years of Chronic D since CDiff which my Drs said was caused by pre-existing IBS combined with a shortened colon and small intestine from my cancer surgery. I have also had cyclic recurring bouts of what we all assumed was mild CDiff due to colonization.

Much to my surprise my Rheumatologist told me two months ago she thought I was celiac and put me on a gluten free diet that has turned my world around. I have regular stools most of the time now, something I did not even have before CDiff and cancer. So far the celiac testing is inconclusive, but my GI also agrees I'm gluten intolerant. I wish I had learned about this 3 years ago!

My turn around was quick once I started the diet. The bloating, cramping and D went away the first week. I have had a few short bouts since, but have been able to trace it to a gluten source. I literally have to read every label, and eating out is a nightmare, but I am feeling sooo much better, it's worth it

alex77
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Re: Long time lurker - please help :(

Postby alex77 » Tue Oct 25, 2022 10:17 pm

That's so crazy to hear I'm so glad that worked for you!! I am definitely going to have to try & eliminate it from my diet because the randomness of when my stomach is good vs bad now is so hard to pinpoint. I will literally feel 100% for multiple days then out of no where here comes the M / D & pain. Makes zero sense to me. The crazy thing is, when this all started for me (Feb. this year), no one knew what it was & I was tested for C.Diff multiple times but the only time it came back positive was when I ordered a MicrogenDX Gastro-Test online ($300 yikes but worth it) & it showed I was positive for A+B Toxins. So to this day I have no idea if there was something wrong with my stomach prior to the C.Diff infection OR if I had C.Diff since the beginning of the year & didn't treat it till like the end of May. Idk, either way what an absolute nightmare this all is. Hopefully I can nail it down a little better once I start messing with my diet. Thank you for the recommendation! :)

beth22
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Re: Long time lurker - please help :(

Postby beth22 » Wed Oct 26, 2022 1:16 am

You might try keeping a food journal. Write down everything you eat and then see if you find any pattern when you get the bad days. With me it can be something I ate the day before or even two days prior. If you see that this happens after certain foods, it might give you a clue. And yes, probiotics can make things worse. They did for me. I found one that I only took a small part of the capsule with applesauce and did okay, but if I took the whole pill of any of them, I would get D, gas and bloating, etc. My stools are firmer without it. You might try to eliminate that as well and see if you improve. I also doubt the Levsin would cause your symptoms.

BetsyS
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Re: Long time lurker - please help :(

Postby BetsyS » Wed Oct 26, 2022 8:54 am

I agree with Beth, a journal might shed light on food triggers. I've learned you have to look beyond the obvious and consider all ingredients. I kept a food journal for quite a while, but gluten was not obvious. I think it was because I was not aware of how pervasive it is. It seems to be in everything, and unfortunately I have an acute sensitivity to even trace amounts, including cross contamination. It took consciously eliminating all sources to see the change for good.

I have become a label reader, and cross check everything with a search before buying or eating. For example, I traced one episode to my favorite steak sauce which contains malt and malt vinegar, a source of gluten. Live and learn!

alex77
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Re: Long time lurker - please help :(

Postby alex77 » Wed Oct 26, 2022 3:51 pm

Thank you both for replying! Believe it or not I have a food log going for about the past month & it is still SO hard to pinpoint what is causing the bad days. It's so wild because if I didnt know anything about PI-IBS & all that, I would 100000000000000% without a doubt assume that C.Diff is back. The symptoms are literally exactly the same, except for now they only last a day/day and a half then disappear. I'm going to try to cut out gluten & the probiotics for a bit because something is causing this to happen I just need to figure out what it is. Never in my life did I think this is what I was going to be dealing with at 28 years old lmao. I'm also going to see a C.Diff specialist in my state on December 2nd, he also specializes in microbiome health so if he gives me ANY kind of knowledge on how to prevent/fix the after effects of C.Diff I will hop back on here & let everyone know as soon as I get home. Thank you for the recommendations I really appreciate you guys taking the time to reply.

alex77
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Re: Long time lurker - please help :(

Postby alex77 » Tue Jan 03, 2023 4:23 pm

Hi everyone, Happy New Year!

SO - huge update. I saw the #1 C.Diff specialist in my state on December 2nd.. & he has been the absolute best doctor I have ever seen in my entire life. He said that my story pretty much followed every single one of his other clients, from kids to elders. He said that I had classic PI-IBS symptoms from all the turmoil my stomach has gone through the past year. I am now on 1 Enteragam packet every day for the next year, & 1 imodium every other day. A lot of the time I end up taking half an imodium every day instead because 1 seems to constipate me too much (the irony lol).

Out of everything I have tried, these two medications have been the most successful. He also told me to completely stop the whole low fodmap / BRAT diet because his thought process is that slowly introducing my old meals back will help my stomach recover quicker... & he was completely right. I have been eating foods that I used to eat all the time (at my house, still not allowed to eat out per his instructions) & my stomach has been handling most of them perfectly fine. Some of them irritate my stomach & cause some PI-IBS symptoms to flare up.. but nothing like it was before.

Since starting his treatment, I have had probably 1-3 M-only bowel movements since the beginning of December, I do not have any more blood, the yellow stool has gone away, & I also do not have loose stools anymore (unless I really eat something that I shouldn't lol). I am seeing him again in 8 days & I am actually excited as stupid as that sounds. I still have some random lingering symptoms here & there - stomach pain at the top, random bloating, still can't gain weight... but all in all I am in a MUCH better place than I was before.

If anyone has any questions for me feel free to ask because he gave me so much info it's crazy.

NanciT
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Re: Long time lurker - please help :(

Postby NanciT » Tue Jan 03, 2023 6:23 pm

So good to hear you are doing better!! For some including myself this can be a very long road.

I have seen on the site Enteragam given post CDIFF but never Imodium. Is your doctor and Infectious Disease Specialist?

Happy you have found a trusted physician, it can make all the difference


NanciT

alex77
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Re: Long time lurker - please help :(

Postby alex77 » Wed Jan 04, 2023 12:50 pm

NanciT wrote:
> So good to hear you are doing better!! For some including myself this can
> be a very long road.
>
> I have seen on the site Enteragam given post CDIFF but never Imodium. Is
> your doctor and Infectious Disease Specialist?
>
> Happy you have found a trusted physician, it can make all the difference
>
>
> NanciT

Hi NanciT, thank you so much! Yes this has been a VERY long road & I cannot wait to get to the end of it lmao.

Enteragam is probably the greatest thing I've been put on since I got rid of C.Diff. I was on Levsin & he had me stop it because he said it was 100% making my PI-IBS worse, & he was correct.

He is actually a GI MD & specializes specifically in C.Diff. HIs name is Paul Feuerstadt if you want to look him up. When he said Imodium I was like ... "aren't you not supposed to take Imodium if you have C.Diff?" & he was like "... but you don't have C.Diff anymore..." & I was like, "oh yeah huh you're right I forgot about that" hahaha. I will say this, taking it along with the Enteragam has been the ONLY thing that has reduced I want to say about 80% of my PI-IBS symptoms.

The Imodium in itself is an absolute life saver that was the key to stop my going to the bathroom 6-8 times a day. He said the whole "don't take Imodium if you have C.Diff" stuff is more of a precautionary thing than anything, & if you are past your infection or even if you need to slow down the diarrhea with your infection you can take it as long as you're being actively treated at the same time.

Regardless, he has been absolutely spot on with every single bit of advice he's given me. Not one other doctor (& I have seen many this past year) has been able to get me anywhere close to where I am at right now & I will be forever grateful to him. Definitely give him a Google search, his track record is incredible.

NanciT
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Re: Long time lurker - please help :(

Postby NanciT » Wed Jan 04, 2023 2:32 pm

Find the right doctor is a large part of the journey...and I am so happy you did!! I know several on the site have taken Enteragam post CDIFF and done very well. My ID gave it to me and it made me very sick, that is why I was curious about the imodium. I have never heard of giving that post CDIFF but happy it is working for you.

In the end, after a year of CDIFF and a Dificid taper, Levsin is what saved me and allowed me to recover. Each of us is different.

Wishing you continued wellness!

NanciT

alex77
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Re: Long time lurker - please help :(

Postby alex77 » Wed Jan 04, 2023 2:42 pm

NanciT wrote:
> Find the right doctor is a large part of the journey...and I am so happy
> you did!! I know several on the site have taken Enteragam post CDIFF and
> done very well. My ID gave it to me and it made me very sick, that is why
> I was curious about the imodium. I have never heard of giving that post
> CDIFF but happy it is working for you.
>
> In the end, after a year of CDIFF and a Dificid taper, Levsin is what saved
> me and allowed me to recover. Each of us is different.
>
> Wishing you continued wellness!
>
> NanciT

Wow isn't that crazy how certain medications affect everyone differently? The day after I stopped taking Levsin I felt 100x better than when I was taking it. & Enteragam basically saved my life, I'm sorry it didn't work for you :(.

I had not heard of the Imodium after C.Diff either which is why I heavily inquired when he recommended that.. but he assured me it was the only way to get the 6-8 times a day going to the bathroom to stop, & it did. Therefore I am not questioning it one bit hahaha. I take half of one everyday & it is enough to keep my stomach/colon calmed down.

Thank you so much for all your kind words & I am glad you are doing good as well!!


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