I hate my guts
© Jennifer Miller

I’m not asking anyone to actually try to diagnose me or sell me anything. Thanks! 🙂

Let’s Talk About Poop – IBS Stories

As a teenager, my mom used to tell me that when I was on a date that I was not to talk about poop at the table. Ask my husband how well I listened. 😉 Poop (or lack of) is my life. (This post may be a little TMI – just a warning. 😉 )

I have IBS. Irritable Bowel Syndrome

I’ve had it since I was about 11, but didn’t get a “formal” diagnosis until 1996 (I was 21.) Funny, the Dr at the time told me it’d probably just go away. Been to various doctors in the past 20+ years and all have concluded that I “just have really bad IBS, deal with it.” It’s kinda hard to just “deal with” level 12 excruciating pain on a regular basis. And yes, it really IS that bad. I’ve given birth 4 times and my IBS pain is twice that pain. It’s literally the worst pain I’ve ever experienced.

You’re not really SICK.

My last experience with a gastroenterologist was in 2013 (I had seen him a few years earlier – had colonoscopy & endoscopy -biopsied for Crohns, Celiac & UC- which were apparently normal.) after I had gone to the ER with what they diagnosed as acute pancreatitis and told me to follow up with the gastro. And so back I went, I was on a liquid diet for a week, they did a cat-scan, said it was normal and if I had any other problems to let them know. (They forgot to tell me I could resume eating food.) Seriously?! You didn’t even solve the problem I’m seeing you for! So, (unfortunately I’ve seen many, many doctors like this & much worse) I haven’t been keen on finding a new doctor.

'I'm afraid that your irritable bowel syndrome has progressed. You now have furious and vindictive bowel syndrome.'
© cartoonstock.com

I had a hysterectomy last June (Adenomyosis & Uterine Fibroids – take that Dr who said point blank “nothing is wrong with you,”) and since then my IBS has shifted and well, gotten worse. I won’t give you all the smelly details as I only discuss poop over dinner 😉 but it’s gotten to feel like more than “just ibs.”  I have constipation dominant IBS.  3-10 days no poop, then rocks, then ALL THE SMUSH and diarrhea. With extreme pain every time I’m on the toilet.  Some days I spend up to 6 hours on the toilet. What kind of life is that? 

I’ve done so many things to try to figure out how to at least manage IBS: elimination diets (gluten-free, sugar-free, dairy-free, yeast-free), probiotics, prebiotics, fiber, laxatives, enzymes, detox & cleanses, enemas, OTC meds, prescription meds, low FODMAP, allergy testing, food sensitivity testing, hydrogen breath tests and nothing has made a bit of difference. I just keep getting worse.

© trine watkins via tumblr

In August of 2016 I went to the ER with abdominal pain & vomiting – they said it was gastroenteritis and gave me some phenergan. (I’m still taking phenergan daily. That episode turned into chronic nausea.) Between August & November of that year I had gained 30 pounds – no change in my diet or activity level. By February 2017 I gained another 20. It kind of leveled off at that point. Several rounds of doctors and useless blood tests gave me zero answers (yes, they tested my thyroid, yes they did all the extras t3 & t4 etc – I’ve had my thyroid tested probably a dozen times and its always normal, smack dab right in the middle of normal. They also tested my cortisol levels which were also normal.) with one doctor telling me that I’m just getting old and I should start running. *laughs unto death* Yes, tell the overweight woman with CFS & Fibro to start running. Yes, I want to lose this weight, I hate it BUT I WANT TO KNOW WHY I GAINED IT IN THE FIRST PLACE! I have lost 10 pounds since my hysterectomy but I’m stuck.

IBS bloating alone makes me look like I’m about 8 months pregnant, but I’ve never in my life weighed this much (outside of actual pregnancy) and no one in my family is over-weight – it’s the opposite! And I want to know why. No one can tell me nor do they think it’s a big enough problem to figure out.

Is it from IBS? Is it something else? Who knows.

So of course now that I weigh this much my activity level has gone down because I don’t have the energy to lug this body around. I do as much as I can but it’s not enough. Though I gain and lose 6 pounds every week based on pooping.

 

literally ↓

 

© helpforibs.com

Right now I’m just tired. I’m really really tired. It’s hard to even get help because most doctors view IBS as something completely manageable. Control stress, avoid triggers …

Yeah, I’m not managing. After 30 years you’d think I’d be the one to know something, but no. Doctors are the only knows who know anything ever. <insert eye roll emoji> So, at this point I don’t know what I want to do.

If anyone has gone through the same thing and has gotten any answers, I’d love to hear your story! (But please, don’t try to sell me something.)

Aside: We were going to try going to Mayo back in 2017 but our insurance wouldn’t cover it and there is no way we could afford it out of pocket even with some very generous donations – but I did resolve one of the issues I was going to see a doctor for there with my new GYN here – so that money literally cured my Adenomyosis & Uterine Fibroids. {Thank you!} I’m reading about the gastro program at John Hopkins, but I’m just so tired. And half the time they don’t consider someone with IBS sick enough

PS. Yes, I’ve tried CBD oil. Yes, I use essential oils. Yes, I use herbs.