I feel like the boy who cried wolf (tmi & N3TR)

erollis · June 2014

I have had ct scans, tiny cameras put in me, tons blood work, pills thrown at me, poop analysts, tested for some allergies, elimination diet and my only diagnosis is IBS and GERDs.

Last night when I pooped (woo hoo!) there was blood! I was in shock, disbelief, and frustrated.

I went into the living room told H and started crying. Needless to say I need to make an appointment with the gastroenterologist again.

I just don't understand how I can feel so bad. Have these painful and debilitating flair ups and "nothing" is wrong. Except I have IBS which most people don't understand or take seriously. I keep going to the doctor and nothing is "wrong". It's good nothing is seriously wrong. But why do I keep having these symptoms that are real and you can't find a darn thing?!

Thanks for listening. Also, I've been fighting my phones autocorrect lately so please forgive me.

Pintobean39 · June 2014

Have you had a colonoscopy yet?

I was diagnosed with IBS 10 yrs ago after my 1st colonoscopy. My mom died of colon cancer young (48) so my Dr's take any gastro problem seriously with me. I had major problems back then. I either couldn't go for about a week or I was having horrible pains and constantly going. I had a hard time going out to eat because I'd get sick. I just had my 2nd colonoscopy last year and it showed I have internal hemmroid's which can cause bleeding.

erollis · June 2014

Thank you @Pintobean39‌. I'll talk to my doc about getting a colonoscopy. I just had a ct scan (month ago) and a bunch of blood work. Of course it didn't show a thing wrong.

I'm sorry about your mom.

lebradford · June 2014

I have IBS too, and it really sucks. I don't think doctors understand it very well, and it seems hard to treat. I tried several different medications for it, and none of them helped. I knew that I would get flare-ups when I was stressed, anxious, or even excited. It could also be in situations like eating (especially eating out) or being somewhere without easy access to a bathroom (like a car or a mall).

The only thing that eventually helped me was taking an anti-depressant to control the anxiety, and then all of my physical symptoms went away. I'm not sure if that's something you're willing to try, but at least you might want to try to think outside the box for what causes flare-ups for you, instead of just treating symptoms or treating the IBS directly.

FWIW, I was on that medication for maybe 5-8 years, and rarely had flare-ups (I was having them 2-3x/week before). Then I got off the medication while TTC (though some people stay on, I think it's a class C drug). I've been off for about 14 months, and while my symptoms have increased, they aren't nearly as bad as they once were. I think it's the kind of thing where the symptoms can come and go throughout your life.

I know that was super long, but I hope that helps some.

Pintobean39 · June 2014

erollis said:
Thank you @Pintobean39‌. I'll talk to my doc about getting a colonoscopy. I just had a ct scan (month ago) and a bunch of blood work. Of course it didn't show a thing wrong.

I'm sorry about your mom.

Find a good gastro Dr. There are so many not serious things that can cause issues. In my research only a colonoscopy can diagnose. Unless you are 50 or over insurance companies don't like to pay for one so push for it. Something as simple as a polyp or diverticulitis can cause problems. The polyp can cause problems later in life and can be removed during the procedure. Make sure you tell them you have had bleeding. More than likely it's prob a hemmroid that's causing the bleeding and they can't do much about unless they are huge but at least you will know.

As far as the IBS they put me on meds 10 yrs ago that helped, I took it before I ate but I didn't want to take it forever so I started researched alternatives. I also am like @lebradford‌ stress can totally mess up my system. I have found that diet has been my best friend for IBS. Fiber ... fiber ... And more fiber is a must!!! Not artificial fiber either it made things worse. I now eat more vegetables and whole grains. I started tracking the foods I ate to see how much fiber I was getting a day. I found once I got between 25-35 grams a day on a regular basis I started feeling better. I can tell a huge difference when I eat unhealthy for a few days it does a number on me.

I hope you get some answers soon and start feeling better. Good luck!

ronniesgirl1981 · June 2014

Please, please consider going wheat-free for a couple of weeks. My husband--who does not have celiacs-went wheat-free and his terrible, awful IBS symptoms disappeared within days. It is absolutely amazing.

Mrs.Ess · June 2014

If you're going todo a colonoscopy please have them do an upper endoscopy as well. I don't know your symptoms but if you have reflux it would be worth a look, also they can more accurately test for celiac disease by direct biopsies of your small bowel. It's easy and worth doing if you'll be sedated anyway

. I used to be an endoscopy nurse and it's a very simple procedure other than the colonoscopy prep before hand.

BunnyBerry · June 2014

I'm so sorry.

10 years ago I knew I had all symptoms of Crohn's (which my mom has) but the stupid GI doctor told me I was overexaggerating, I was just a normal college-age girl with tummy issues, I should try to relax (I didn't have anxiety or anything, but they kept telling me it must be because apparently that causes all gastro distress in college-age females), and take Immodium if needed. They have me an endoscopy and sigmoidoscopy (which basically leave out the most common Crohn's-affected areas) and said I might have mild IBS and I had GERD from a hiatal hernia.

8 years of horrible suffering later (it became my normal), it finally got so bad I could hardly function. Back to the same doctor, and she pushed on my belly like crazy while I writhed in pain, and made me tell her where it hurt most - then she says, "I told you so, that is your ovaries, and it's just your period coming, so you don't have Crohn's." They scheduled me for a colonoscopy 3 months in the future. She gave me an IBS prescription which stops you up if you have pain and told me to take it whenever. Oh, and a short time later, a 6cm ovarian cyst partially burst, putting me in the hospital, where I found I also had a 5cm cyst. So no sh!t the ovary pressure hurt.

I advocated for myself and saw a new GI, who instantly got me a barium x-ray series which showed a 20-cm stricture where my small intestine was almost closed off, and said the IBS presecription would have ended me up in surgery to remove a part of intestine if I had taken it. He put me on high dose steroids and a low-fiber, low-residue diet (which I still can't get off of) and the pain diminished from an 8-10 to a 5 or less within a couple days.

I'm still disgusted by the treatment at the first GI, and the fact that I could have received treatment for the last 10 years and maybe prevented a lot of the horrific permanent damage to my insides, no to mention 1000s of hours of unbearable pain and embarrassing bathroom trips etc.

I'm not saying everyone diagnosed with IBS actually has something else, but for me it was a semi-diagnosis that covered up my real problems. So if you aren't finding relief with recommended treatment, I suggest pushing for further testing!

Sorry to go on so long...clearly I have not moved past this yet emotionally, lol...I know it's really scary when our insides are hurting. Hopefully you can get a good explanation for the blood.

erollis · June 2014

Oh My Goodness! Thank you all! I'm so sad to hear what you all have went through!

They are fitting me in at 2:15 today, thankfully.

Endoscopy, CT Scan, bloodwork, Celiac test have all showed nothing wrong. (I did not have a biopsy for celiacs)

I have been on omeprazole for about 2+ years now if I'm remembering correctly. It's the biggest battle with my insurance company. Now I'm on progesterone and bromocriptine long term it's my second biggest battle. He recently put me on meds for IBS pain. It was only a 1 month supply. It help some but not a lot. I can't even recall the name at the moment.

I have had regular ultrasounds (ute and overies), a transvaginal ultrasound, and bloodwork when they thought it was fertility related. Everything looked fine. I have not been diagnosed with pcos or endo. I have not had a lap. When all that looked ok they sent me to the GI.

I eat as much fiber as I can (and iron because I am mildly anemic). I battle with iron and vitamins because they make me even more constipated but I need the iron. I stay away from as much gluten as I can. I'm not 100% gluten free (I'm about 95%) but I'm starting to think I need to go this way. I've discovered what food make me sick, give me flair ups, and what food chains/restaurants to avoid. Even with all this I still get flair ups from food if its out of my norm (I stomach/process some brands better then others). If I can't read out loud and know what the ingredients are I try to avoid it.

To much stress is a big factor in how much I hurt and intestinal problems. I haven't noticed a correlation between depression and Gastrointestinal issues. But I have been diagnosed with depression in the past. I haven't been on meds for depression for a good 10 years. I'll keep this in mind as I do get depressed from time to time. TTTC does not help.

The blood was bright red. My stools have never been what I consider "black" or bloody. I'm also going to add when I wiped it was a little mucusy. It was a bit perplexing to see because red, mucusy stuff should only be coming from my ute imo.

I will most certainly talk about a colonoscopy, a barium x-ray series, and a biopsy. I will also look into the possibility of a new Dr.

All this pain and recently (past 3 months) the frequent, unexpected flare ups makes working impossible or very difficult. I have become unreliable imo and I don't like that. If I could just sit instead of standing, walking, bending, and squatting all day I think that would help. When I hurt and I move that much it makes it worse. Movement isn't bad but the amount I do doesn't help. I have been considering a leave of absence from work and searching for a desk job. My old hospital everyone was understanding and helpful. At my new hospital they don't understand.

A bunch of thanks to everyone! You all are the best! I will let you know what the doctor says.

ronniesgirl1981 · June 2014

If you are considering removing all wheat, I recommend reading Wheat Belly. The author says that zero wheat is the difference...that greatly reducing doesn't have the same impact.

In any event, I hope you find the answer and start feeling better. It sounds miserable!

erollis · June 2014

@Rumbera28‌ no cyst or pimple on my tailbone/bum that I can find. That sounds awful tho.

@ronniesgirl1981‌ thank you for the read recommendation.

The doctor will be doing a colonoscopy. He will also do a biopsy depending on what he sees. I didn't even have to mention it. All his suggestion. He's prescribed a different med to help with the IBS and stress. And I'll continue with the omeprazole since that helps with GERDs.

Thank you again.

AngM123 · June 2014

All these gals have given great advice. Another thought, as someone mentioned is endo. I went through all the hoops, short of a colonoscopy, for years trying to find answers to what I was told was IBS. Turns out after getting a lap for IF, my bowels were wrapped in adhesions from endo. I went from having embarrassing "attacks" numerous times a week to none at all. I also switched to gluten free. Good luck I hope you find some answers!

ky29 · June 2014

Good luck with the testing! Hope the new meds help!

lebradford · June 2014

I heard from a doctor once that mucusy stool is fairly common with IBS. The question was even on my intake questionnaire. I also sometimes have bleeding related to constipation.

I haven't been as proactive as I could be, but I have found that the Citrocel brand fiber pills work for me when no other brands or types do. I was having a hard time with the generic PNVs, so I switched to the Rainbow Lite version and started taking 2 citrocels with them, and I've been tolerating them much better since then. My back-up plan for PNV constipation is to switch to straight folic acid in the short-term. I know that might not be an option once I'm pregnant because the iron will be more important then, but before conception the folic acid is really the most important thing.

Sha259 · June 2014

I cannot imagine going through the frequent discomfort and pain that people with IBS and other IBDs face.

(((HUGS))) to you all.

I do not have these issues, but I am a staunch fan of being your own advocate for health and firing a Dr if they seem not to be listening to you or looking into your best interests. I know that there are many different types of irritable bowel diseases (not just IBS) and there are different treatments for them, as their causes can be different (omeprazole will NOT alleviate autoimmune diseases of the bowel).

You have gotten great advice, and I hope that you can receive some answers and relief soon.

erollis · June 2014

Thank you! Thank you!

This is all great advice and great support.

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