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I Just Don't Want to Feel Alone


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#1 Microbio

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Posted 15 August 2018 - 11:23 PM

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Hello,

 

I'm new here (24 years old) and I guess I just don't want to feel alone in this. I don't technically have a diagnosis of IBS, but my gastroenterologist highly suspects it and I will have a colonoscopy on the 27th of August to confirm (or rather, rule out other bad stuff to get the diagnosis of) IBS. I guess I would just appreciate learning if some other people have felt similar things to make me less worried about it all.

 

I'll be the first to admit that I tend to get anxious, worried and stressed out. I was a bit of a mess in college, but I feel like I am in more control these days.

(This probably isn't very relevant to the story of my (most likely) IBS, but in college I have had episodes where when I have drank too much or ate bad sushi, I nearly pass out. Like right before I go my peripheral vision becomes all white, and my ears ring. It hasn't happened like that for awhile, but maybe that was the beginning of all this.)

 

For the most part, I consider the beginning on December 3rd of 2018, when I was diagnosed with appendicitis (perforated appendix at that point) and underwent an appendectomy.

 

(I had suspected this earlier and went into the doctor at my local clinic, but he didn't really listen to me and I wasn't very good at advocating for myself. 2 Days later I ended up at the ER at 5 in the morning--I couldn't sleep due to the pain and bloating.)

 

But anyway, I got my appendix out and they put me on a bunch of broad-spectrum IV antibiotics before surgery as well as post-surgery oral antibiotics. 2 weeks later I found myself with positive culture of c diff. I counted myself pretty lucky since I knew what to look for and went in ASAP. The D wasn't even that bad (as I later found out with the BSF scale, I was probably chronically constipated - I didn't get the most fiber in my diet). However after the first course of vancomycin every 6 hours for 14 days, I had a relapse. Luckily, it was only the one relapse. After the second round of antibiotics, I seemed to kick it. And it wasn't super seamless for my gut afterward, but after a month or so I started feeling mostly better.

 

But it didn't last very long. On May 18th I had the absolute worst case of D I have ever had in my life and the most painful cramps. My stomach completely flushed everything out. I thought it might have been food poisoning, but my mother had had nearly the same dish and was fine. A month or so later I had a similar experience. My pulse got super high, I felt dizzy and nauseous with a bit of shaking and within the span of two hours everything was flushed out of my system. And then I didn't have to go for the next 3 days. The next couple days after would make my entire system angry. I would have an unsettled stomach and cramping pain that just made me want to lay in bed and not eat as hunger was preferable to stomach pain after. It gradually lessened over a couple days. But anyway, I went into the doctor worried that I have some stomach bug, and was fearful for c diff relapses. I had a heightened WBC level, but they couldn't really find anything beyond that. None of the stool cultures or tests came up with anything. They even had me get a CT scan, but there was nothing.

 

And this weird episode where my stomach has a "everything must go" type of "sale" kept reoccurring far too often to write it off as catching the occasional stomach bug. On the bright side, none of the follow up episodes were as painful, but they were still very unpleasant. I couldn't really trace it to any particular food. And it seemed alright since it was occasional and the rest of the time I felt OK. But then, around July, I just started feeling awful all the time. I couldn't eat as much as I used to. My stomach would feel unsettled- I would get nausea usually after everything I ate. I would get these dull lower abdominal stomach cramps like I was on my period but all the time. And while that is tolerable for a week or so, it became unbearable when it was this constant unrelenting dull pain. I would have weird irregularities with going and M sometimes. I would go multiple times (4-5 times) in one day and then not at all for the next two.

 

I finally plucked up the courage to go see a gastroenterologist and along with the colonoscopy she said I should try the low-fodmap diet. It has helped some with the nausea and stomach upset, but I still have low cramping pain. Sometimes its so bad I wake up in the middle of the night nauseated and crampy. And its not like severe pain that awakes me. More like I maybe have a period of sleep that is not as deep, and then I notice the dull constant pain. Sometimes after I eat its almost like I can feel the food moving through and hitting these "kinks" in my digestive track--I'm not sure how to explain it.

 

From some things I have read for people who have IBS, I know that whatever is going on with me is pretty mild. But it just feels unfair sometimes--I'm trying to stick to this diet and avoid all these triggers and I still have this unrelenting crampy pain.

 

Has anyone else had similar experiences?



#2 jeffinnh

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Posted 16 August 2018 - 02:01 PM

Yes. Certainly have had similar experiences. 

 

The lower GI cramps are probably causing vasovagal response (https://www.verywell...-reflex-1945272) and https://www.mayoclinic.org/diseases-conditions/vasovagal-syncope/symptoms-causes/syc-20350527

I've had a few of those in my life time. They are scary as hell, especially in public. Just grab the walls and try to breathe from your diaphragm (and not vomit).

I actually made it happen once by eating a bunch of horseradish. An hour after ingesting I was on the toilet emptying the whole contents of my SI/LI and stomach.... barely finished and cleaned up before rolling onto the floor. Vision was quite "white/plad" for a minute there. Spent the next 45 minutes balled up on the floor in my in-laws guest room (to which I crawled, b/c walking wasn't happening). 

Needless to say, I don't eat horseradish anymore. 

I've found a low-FODMAP diet and a lot of VSL #3 to really help.



#3 katiejoy96

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Posted 16 August 2018 - 02:04 PM

            Hi! Just replying to let you know that you're definitely not alone, and, from what it sounds like, it does seem like you might have IBS. I sometimes pass out too during IBS attacks when the pain becomes too much. The D episodes you describe sound like mine. Sometimes I can't trace it to anything I've eaten either, it just happens. Often it wakes me up at night from a deep sleep too. It sounds like you're on the right path with a diet change though. Some diets that have been recommended to me haven't worked while others have. Unfortunately, it's kind of a trial and error thing until you find something that works. One thing that I've found recently for lower stomach cramps is an essential oil blend: 1 tsp. Carrier oil (like coconut oil, olive oil, etc.), 3 drops of Fighting Five (Eden's Garden) essential oil, 2 drops Lavender (Healing Solutions) essential oil, and 2 drops Frankincense (Boswellia serrata- Eden's Garden) essential oil mixed together and then rubbed in circles onto stomach. Just make sure that you get 100% pure and therapeutic essential oils and never ingest them. I'm not really sure how it works but it mostly helps the anxiety I think.



#4 Microbio

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Posted 18 August 2018 - 11:21 AM

            Hi! Just replying to let you know that you're definitely not alone, and, from what it sounds like, it does seem like you might have IBS. I sometimes pass out too during IBS attacks when the pain becomes too much. The D episodes you describe sound like mine. Sometimes I can't trace it to anything I've eaten either, it just happens. Often it wakes me up at night from a deep sleep too. It sounds like you're on the right path with a diet change though. Some diets that have been recommended to me haven't worked while others have. Unfortunately, it's kind of a trial and error thing until you find something that works. One thing that I've found recently for lower stomach cramps is an essential oil blend: 1 tsp. Carrier oil (like coconut oil, olive oil, etc.), 3 drops of Fighting Five (Eden's Garden) essential oil, 2 drops Lavender (Healing Solutions) essential oil, and 2 drops Frankincense (Boswellia serrata- Eden's Garden) essential oil mixed together and then rubbed in circles onto stomach. Just make sure that you get 100% pure and therapeutic essential oils and never ingest them. I'm not really sure how it works but it mostly helps the anxiety I think.

Thanks for replying. With how painful some episodes are and how almost unprompted they are, it starts feeling like there must be something wrong going on there. But I've definitely had times where I'm super stressed and 4 hours later get really sick. Its kind of weird how it takes 4 hours for my gut to react. But when it does, it doesn't hold back wacko.png



#5 Johnnie Dunkum

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Posted 03 September 2018 - 08:16 PM

You are not alone. Unfortunately what works for one person may not work for everyone, but see if this helps you any. I was more alone than ever when my gastroenterologists said I had tried everything and they did not know how to help. My colonoscopies showed nothing by the way, so don't be discouraged if your is the same. If they had not missed the numerous indicators for IBD, and diagnosed me with IBS instead, I could have recovered from the downward spiral of systematic inflammation years ago. My story may be a bit unique and I am need to see a colitis specialist to confirm Crohn's, but either way, this helped me confirm everything I had told the doctors for years, including Crohn's in the family. If nothing else, don't just accept a diagnosis you don't believe in, especially when nothing they suggest to help works, no matter what. I would not encourage self diagnosis, but don't concede ownership of your health to them. They cost me enjoyment of many, many years of my life, so I am hoping I can help at least help some people avoid that living hell. I vowed to try to help, if I saved myself, so read and make your own opinions.

https://discourse.hu...n-one-week/2949





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