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New, Worried and Breaking the Rules


I'm new here. I hope it's not too obvious. I'm sure there's an intro section I haven't found my way onto yet as it seems every.single.article. is written for me and I must read them all at once!

I haven't been diagnosed. I've always had problems but thought having the emergency gallbladder removal several years ago was my cure-all. Of course, it wasn't but it did in fact improve a lot.

Here's the questions...statements...pleadings... I began really, unable to hide from symptoms in August. I abruptly lost 20+ lbs (no complaints) and put myself on a saltine cracker and sprite/Gatorade diet to help with the diarrhea which was every single time I ate. Labs were ok except for one elevated something they told me was associated with Colitis. Colonoscopy thereafter (I'd had a previous endoscopy at the same place years prior that suggested severe inflammation but no ulcers, I was given pills- I took them for a bit but was young and you know started feeling "fine"😉 This time they found only mild inflammation in the endoscopy but inflammation from the colonoscopy and some polyps - nothing suspicious and no colitis. Polyps benign.

The thing is THAT pain I usually get on my lower left, yes, left side wrapping around my back was the worst I'd ever felt AFTER the colonoscopy. People usually complain about prep. It wasn't fun for me either but that said, I will never have another colonoscopy due to the pain after. Three days. I had pain medicine, it didn't touch it. I was taking Bentyl, Zofran, Carafate and Protonix. They began to work. Until they didn't. But while they did I slowly began to eat again and put the weight back on (in lightening fashion I might add) and as an awesome article on here stated - it's sometimes easier for us to eat the carbs. So I added doughnuts to the saltines. Any bread product. No more veggies. No more salads. No way.

The pain has come back. I've been told for sometime that it's from my back (I have an old injury) but I haven't believed it. The pain is associated with Bowl Movements except it comes before, severe and suddenly and only lessons after. The pain is intense. I've been everywhere. I went to my gynecologist to ask about my bladder - from a hysterectomy. She said it was fine. I asked about Kidney stones but UA was fine. I asked if inflammation in my colon could be pressing on my bladder (an oddball symptom I guess, I have to urinate when I'm in a flare w/stomach so much that others ask if I've seen a doctor for this constant pressure and need I feel) she said it was possible. I can't deal with this pain. I'm back on the saltines. As long as I stick to that and bread it's manageable with only an episode or so a day of pain. I have burn marks on my side and back from the heating pad.

Like many of you, I've also woken up in the middle of the night due to what I can only say is a rectal spasm? An urgency that nothing comes of. Looking back - back when I always had something with my stomach but not enough to warrant an actual doctor visit (although I did have the acid reducer as a teen and young adult prescribed) I realize now it WASN'T normal to carry around pepto everywhere. I love pepto. I mean I actually LOVE IT. It's right up there with sprite zero and saltines. I have all these RX but man I love pepto. It - nothing - stops diarrhea but it soothes.

....I also had shingles. Really shingles the first time. But it started in my stomach. I confess I took a ton of Imodium and a bottle or two of pepto (hubby having surgery and I had to be there) but the second time with shingles... wasn't quite shingles. She said it looked like it but it crossed the midline (this time it didn't hurt) it was on my head. It burned, but no real pain. She suggested that there was something associated with GI and skin as I was yet again having the GI issues.

It's funny. Normally I'm bloated and full of it. Literally. These days -not so much.

I'm going to the doctor today. The GI. I can't find a checklist to take. Suggestions? I've said repeatedly, "I'm not leaving his office without a biologic." Now I don't feel so tough. I'm scared. Not of what it is but of not getting help.

I've embarrassed myself at the intro..I was determined not to write this much. I can't even think of a proper tl:dr. I can think of something, it's just not proper. 😀


  1. Also maybe filed under weird symptoms? Or obnoxious member -
    As I’m sure the OP was long enough ((sorry!)) during this time Late August-Beginning of November- I lost my voice. At the same time my thyroid was “abnormally large” I hate using the word “goiter” that my endo used. She was sure it was graves. Primary sure it was Hashimoto’s- neither were correct. Then my endocrinologist said the voice could be from my stomach. The acid? I understand what she’s saying- it’s just strange, I never ever have heartburn. It’s just the urgency, the weight loss, then gain/bloating, the unrelenting need to sleep, but not actually sleep- the times when I’m wondering how I can break out in severe sweat have diarrhea and vomiting all at the same time- but the thing that’s getting to me right now is the abhorrent pain. This pain is worse than any surgery I’ve had and I certainly enter crisis mode when it happens- like a checklist: pills, heating pad, notify family : moms in pain- translation: you’re on your own.
    As much as I hate this I’m pretty sure we are crossing the point where my husband hates it ... probably just as much. Never a good sign! 🙁

    1. I am so sorry you are going through all of this. There is nothing worse then feeling sick and not getting answers.

      How did the appointment with your GI go?

      As far as a checklist, this might be helpful. It's an article that goes over diagnostic testing for Crohn's. Take a look over it and perhaps discuss some tests you'd like your doctor to do.

      I'm wondering if you have been tested for SIBO and H pylori? Maybe something to consider as well.

      Also, how is your diet looking? I know you say you do saltines and gatorade but when you are able to tolerate more, what are you eating?

      I hope you get answers soon and that your pain subsides.

      Sending strength your way, Elizabeth (team member)

      1. I'm sorry, I have only just seen this, so it's a bit late to be giving you any tips or checklist info!
        How did it go?!
        P.S. The rectal spasm you're referring to is called tenesmus!
        ~ Sahara (Team member)

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