Is this IBS, or something worse?

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Nov 23, 2015
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Do I have IBS, or another issue going on? I'm copying the questions off of a standard IBS questionnaire one can find floating around the internet, plus adding any additional information I think is relevant at the end. I've been diagnosed, but the doctor also attributed it to anxiety, which is something I've never had and multiple healthcare providers can attest to. My flares do not occur in relation to stress either (I've monitored). Sorry for the following wall, I've tried to keep it as organized and simple as possible.

In the last 3 months, how often did you have discomfort or pain anywhere in your abdomen?
This flare started Thursday, so very little, but the pain is 7-10 depending, and located on my lower right side. I've broken the pain scale once this week and just prayed for God to kill me then. I literally fell off of the stool.

Have you had this discomfort or pain 6 months or longer?
This flare, no. Previously yes. They've lasted up to 8 months before.

Did this discomfort or pain occur only during your menstrual bleeding and not at other times?
No.

How often did this discomfort or pain get better or stop after you had a bowel movement?
Never. Typically it worsens (feels like a ripping up my left and right sides) during a BM, but never drops below baseline pain after. Oftentimes it is worse for hours after a BM.

When this discomfort or pain started, did you have more frequent bowel movements?
Yes.

When this discomfort or pain started, did you have less frequent bowel movements?
No.

When this discomfort or pain started, were your stools (bowel movements) looser?
Yes. They're yellow, range in structure from a 6-7 on the Bristol stool scale, and often have chunks of undigested food present. (I've never googled poop so much before in my life)

When this discomfort or pain started, how often did you have harder stools?
Never

In the last 3 months, how often did you have hard or lumpy stools?
Once? I was constipated a while back, but no symptoms besides the not pooping bit.

In the last 3 months, how often did you have loose, mushy or watery stools?
Whenever I had the pain.

In the last 3 months, how often did you have difficulty having a bowel movement (straining, feeling that you have not finished)?
Occasionally? It's rare, but I call it the constipated diarrhea. I generally assume a natural position (i.e. squat) until it is ready to pass and and am always surprised when a single 'solid' stool will pass, followed by significant diarrhea.

In the last 3 months, how often did you feel that you had to rush to the bathroom as soon as you got the urge to have a bowel movement?
Again, any time the pain is present. Otherwise not at all.

In the last 3 months, how often did you feel bloated?
Not at all

In the last 3 months, how often did you feel that your abdomen/belly was actually distended?
Occasionally

In the last 3 months, how often did you feel that you had a problem with passing too much gas/wind?
Never.

What is your age? 19

No known history of celiacs, IBDs, etc. There is a family history of unidentified digestive problems.

Were you recently treated with antibiotics? No

Have you –unintentionally- lost weight? Yes. 8-10 ibs depending on the scale. 3 pant sizes and many bra sizes.

Did you lose blood with your stools? Yes. Occasionally. I do suffer from hemorrhoids so I don't count the typical hemorrhoid bleeding in this statement. Only darker blood that appears to be contained within the stool.

Did your symptoms wake you up at night? Yes.

I've been able to associate the most severe pains with: red meat, eggs, and very fatty foods. Some correlation to gluten. (I'm gluten free now as my SO has celiac disease).

I get mouth ulcers frequently, as well as a rash about my trunk. My fine joints (toes, fingers, etc.) are typically very inflamed and sore in the AM during a flare. I typically sleep 7-8 hours a night, but during a flare, I can get an iffy (sometimes my sleep is disrupted) 12 hours or more and still be exhausted.

My baseline temperature is typically 97.0-97.6 degrees, and tends to hover around 99.1-99.9 (never breaks 100) during a flare as well.

I also have Raynaud's phenomenon and ADHD.

If IBS is likely to blame, what are treatment options? My pain levels aren't livable, and the treatments that have been proposed to me in the past have not worked (increased fiber, omeprazole, coping mechanisms for stress)
 
This is a very hard disease to deal with. I have been told that I have IBS as well as Crohn's. I don't know which is which.
 
IBS shouldn't cause weight loss, wake you up at night, or cause blood in the stool (though haemorrhoids might). Lower right pain, aching joints, mouth ulcers and tiredness all could be Crohn's.

Have you seen a doctor? Sounds like you should.
 
Have you been investigated for more than IBS?

Have you had blood work that included iron panel and inflammatory markers such as CRP or SED?

Has the GI ran a stool test to check for blood? And a fecal calprotectin stool test to check for inflammation in the bowels?

I would want these things investigated to ensure you aren't dealing with IBD instead of IBS.

Your GP can run the blood work and the fecal calprotectin stool test or have the GI run them.

IBS is a diagnosis of exclusion so testing such as blood work, fecal calprotectin stool test, imaging like MRE or MRI as well as endoscopy and colonoscopy should be done to exclude other culprits such as IBD. Only after excluding CD, UC or other forms of IBD should IBS be dxed.
 
Have you been investigated for more than IBS?

Have you had blood work that included iron panel and inflammatory markers such as CRP or SED?

Has the GI ran a stool test to check for blood? And a fecal calprotectin stool test to check for inflammation in the bowels?

I would want these things investigated to ensure you aren't dealing with IBD instead of IBS.

Your GP can run the blood work and the fecal calprotectin stool test or have the GI run them.

IBS is a diagnosis of exclusion so testing such as blood work, fecal calprotectin stool test, imaging like MRE or MRI as well as endoscopy and colonoscopy should be done to exclude other culprits such as IBD. Only after excluding CD, UC or other forms of IBD should IBS be dxed.

Nope. I had my iron levels checked ages ago, before my first flare due to fatigue and low blood pressure, but nothing since.

I personally felt that the doc was too quick to say that it's stress induced IBS with no further evaluation, and I guess that's what I'm after. Some reassurance that I'm not wrong and that these kinds of pain aren't normal. That I at least warrant a further eval.

I was never even given a GI referral. I suppose it's time to refer myself, as my insurance doesn't care either way.
 
I suppose I should also add that I have spoiled myself before, if that isn't the most embarrassing thing in the world to admit at 19.
 
Absolutely, if you can self refer to a GI then I'd definitely do it.

Like someone else mentioned, night time bm, blood, weight loss would all be red flags for further investigation before slapping an IBS label on you.

Good luck I hope you get answers quickly.
 
My son is 19 and has had CD since 15. Nothing bowel related is taboo around our house! Haha

I'm sorry you had that experience. It has happened for my son only a couple times during the night. He was so ill at the time that I don't think he really thought of being embarrassed.

So much to deal with as a teen having this illness. I truly hope you find answers soon
 
Absolutely, if you can self refer to a GI then I'd definitely do it.

Like someone else mentioned, night time bm, blood, weight loss would all be red flags for further investigation before slapping an IBS label on you.

Good luck I hope you get answers quickly.
I agree.
 
A GI referral or second opinion would be ideal in this situation. Like said above, the night issues, blood and weight loss should be looked into more in depth by a medical professional.
 
Thanks guys for all your support and comments. I'll be with the family over Thanksgiving, so I think I'm going to have a sit down with my mom about my health and my desire to see a doctor about what ever is going on.

I suppose if anyone out there understands the pain and shame of what ever is going on, I'm in the right place. Today I feel a little better actually. More reflux type pain and a slight left side ache+the standard right side ache, but I don't feel like death warmed over. Last night I was a mess though, and I'm really not holding out too much hope for the holidays. Work went well, only 2 bathroom runs in 7 hours!
 
So I've got an appointment with a PCP in a week! I filled out on online appointment request and got an immediate call back. The nurse wanted to know if I was currently pooping blood and what my current pain levels were? (The answers were: I don't really know, my stools were bizarre today, and probably a 6 or so today) She was quite relieved to hear she didn't need to urge me to go to the ER. I was as well.

She said that I'll probably be sent to an GI down the road, but she'd like to start with a PCP to evaluate my general health. She's transferring my quick list of symptoms over and I'm encouraged to make a list of anything else that concerns me. She mentioned that she suspects diverticulitis, based on what I was telling her over the phone. I don't really care, so long as someone listens and evaluates my problems!

I'm supposed to be on an exceptionally bland diet until the appointment and avoid hard to digest foods.

I've been in pain for ~ 4 weeks now, with some periods being more or less painful than others. Today I feel pain just to the left and a little below my navel and when I gently press on various parts of my abdomen, I'm significantly tender on my lower right side which is more of a concern to me than the left side pain, as that is where my worst pain typically strikes. Something tells me tonight will be a late night diarrhea night.

Sorry for the novel! I also have a quick question. I was glancing around the forum and saw someone mention perianal skin tags. What do they look like? This is going to be way too much info, but I've had a weird flesh colored lump? blob? IDK? on my anus for years now. I always thought it was from a hemorrhoid, but could never remember the development of said hemorrhoid. It was just there one day, never purple, and never really painful.
 
Happy to hear you've got an appointment coming up. I hope you find it beneficial in figuring out what's going on and getting proper treatment. With regards to the skin tags I don't have personal experience with those but if you do a search on the forum or an image or basic web search on google you may find the answer to your question.

Wishing you all the best and feel free to keep us posted!
 

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