Could I have an IBD? HELP

[CaptainHair]

Hi Everyone,

I’d like to say thank you in advance to anyone who takes the time to read this, even if you don’t reply (I know it will be long to read and I appreciate it if you took the time to read it). I’m really in desperate need of some advice/feedback. Quite frankly I don’t know what’s wrong with me. I’m not even sure I have an IBD. I’m kind of hoping some of you might be able to let me know if on the surface my situation sounds like an IBD.

During my last 2 years of high school I had a dramatic change in my bowl habits. I went from regular movements to “the snakes”. I never had a regular movement. I was trapped in the bathroom sometimes for an hour or more. I continued to be healthy though. I lifted weights and ran a couple miles per day.

This continued to be my situation for the next 5 years. Shortly thereafter I started having intense diarrhea every time I ate. Some of the time it would be particularly intense and I would eve bleed. A couple times the pain in my gut became so bad I blacked out. Once around this time my parents called for the paramedics and by the end of the day I went to the ER. They gave me some stuff for inflammation and sent me on my way. Sigh.

My family doctor seemed to think it was IBS and that I just needed to have less stress in my life. Of course I said getting all this diarrhea under control would go a long way to do that. He said it was a symptom of the stress and not the cause.

After about two more years of this I started seeing gastroenterologist. I had blood work, stool tests, Upper GI series, and a colonoscopy. Even though I was still sick as a dog the tests all came back negative. They said no IBD, no celiac, no bacteria overgrowth, best GI system we’ve seen all month. We don’t know what to tell you. I felt so disillusioned. What to do.

About 3 years ago someone mentioned gluten intolerance and suggested an elimination diet. So I tried eating just white rice, chicken and water and I was still sick. Soon we tried antibiotic free chicken and two days later I was regular. First time in about 20 years. I tried eating pork chops and white rice and got sick again. So we tried antibiotic free pork chops and again I was regular.

So then I was really excited (bouncing off the walls). Then I tried eating a pear and I got so sick. I had so much diarrhea and again bled. I was in a lot of pain but didn’t blackout.

I’ve been able to eat a few other things but not much. Here is my complete list of what I can eat:

Water
White Rice
Hellmann’ Light Mayonnaise (mixed with the rice and meat)
Antibiotics free chicken, pork chops, roast beef, steak
2% milk
Nesquik Chocolate
Breyers Chocolate Ice Cream
Krogers Chocolate Syrup
Baked Potato
Blue Bonnet Butter
Rice Crispy Cereal
Swiss cheese


Things I have eaten that immediately made me sick:
Any meat that isn’t antibiotics free
Apples
Pears
Cheerios

But if I eat anything else I seem to be sick within a few hours. Popcorn, fast food, chicken noodle soup, peanut butter sandwich, potato chips, crackers, anything.


I am drinking milk and eating ice cream like they are going out of style and have picked up an alarming amount of weight. But for my breakfast, lunch and dinner I am eating rice with mayo and one of the meats listed.

When this is all I eat I am exhausted. I tried taking a multi vitamin but I get sick whenever I do.


If I eat anything off my list I am sick shortly thereafter (even if the vegetables are cooked).

I can’t take this anymore. I am missing out on so much. I am tired all the time. I sleep all the time. I feel weak. Just walking up the stairs are a chore now. I know I’m no spring chicken any more but even my 90 year old grandmother is getting around better than me.

But if I eat anything else I am so sick with diarrhea and it hurts. If I thought someone would take out my lower intestine I would be tempted to do it (and yes I know that would suck).

So with all this out there, does this sound like an IBD to any one? Does the fact that I can’t eat meat that isn’t antibiotic free sound like something to anyone? Does anyone have any ideas on what could be going on with my GI system if it isn’t an IBD? Please, please don’t say IBS. I’ve never read about anyone collapsing in pain from IBS. It’s got to be something.

Thank you for any feedback or guidance you can provide.

Steve

 

[SarahBear]

Welcome to the forum, Steve!

Did you stress to your GI that you had blood in some bowel movements? That's very, very important. It is definitely not IBS if there's bleeding. Also, it doesn't sound like your small intestine was checked out. I'd suggest requesting a capsule endoscopy. If your doctor seems unwilling to look further into the matter, I encourage you to find one who will. You definitely need to figure out what is causing this.

It's good that you've found foods you can better tolerate, but the problem certainly isn't resolved - especially since you're fatigued. Getting your vitamin levels checked would help pinpoint any deficiencies that could be causing / contributing to this. You might have better luck with more specific vitamins rather than a multi-vitamin, or it may be something that could be given via injection so as to not aggravate your stomach symptoms.

It could certainly be IBD, but I'm sure there are other possibilities as well. Unfortunately, I'm not well-versed enough in the matter to make any suggestions.

I hope you're able to find answers soon!

 

[Jennifer]

Hi CaptainHair and welcome to the forum!

I wouldn't accept IBS as a diagnosis either if you're passing blood. You said that when you went to the ER that they treated inflammation and sent you on your way. Where was the inflammation do you know? IBS has been known to cause microscopic inflammation in some people but nothing that would send you to the hospital and require treatment (I'm assuming they gave you steroids).

For sure have tests done on your small bowel. While waiting for a pill cam as suggested you could have other tests done like an MRI, MRE, CT scan, and a small bowel follow through.

Have you tried any supplement drinks to try and add more nutrients? As mentioned, definitely have your vitamin levels tested such as iron, B12, vit D, potassium, magnesium, folic acid, Zinc etc. Being low in these along with blood loss and dehydration can lead to fatigue and weakness along with other symptoms.

Even though many tests can and do come back normal that doesn't mean there's nothing wrong. It can take many tests before a diagnosis for IBD can be made so don't lose hope and continue testing. Keep us posted.

 

[afidz]

Hello and welcome to the forum! I am sorry to read that you are having such a hard time, I can only imagine the frustration you feel. Take a look in the undiagnosed club http://www.crohnsforum.com/forumdisplay.php?f=75 . There are people there that are in the same boat as you and you may find comfort in talking to them. Also, I would take a look at the doctor review section as well, a second or third opinion could never hurt and the doctor review section can point you in the right direction. Here is the link for that http://www.crohnsforum.com/forumdisplay.php?f=79
This is a wonderful community of people all over the world coming together to support each other. I hope you find the support and comfort so many of us have found here.
It does sound like some type of IBD to me, NOT IBS because of the bleeding.
You may have already said and I just missed it, but are you on any type of meds? Since your diet is so restricted you might want to consider taking supplements. You are already at risk for nourishment because of the diarrhea. B12, Vitamin D and Iron are the common deficiencies when it comes to IBD. It is also very common for your electrolytes to be low because of the D. Sometimes water is not enough to keep you hydrated. Bananas are usually on the safe side, and they are a great source of potassium and electrolytes. Gatorade is also a good option to balance electrolytes as well , I drink the G2 series because it has less sugar than regular gatorade. When it comes to fruit, I stay away from anything that is citrus or has a skin. so pretty much bananas and melon.
Also, another thing I would like to add to what was said above, once you get your vitamin levels checked and you see what you are deficient is, you can get an idea of where in your intestines is diseased. For example, my B12 levels are always low because I have Crohn's in my Terminal Ileum where B12 is absorbed. Because my TI doesn't function properly, it doesn't absorb B12 properly .