5 years and no Diagnosis...

[Splendorsolis]

That's not fully accurate, the one Doctor seemed to loose interest, at which point he plainly said, "I don't know what to call it so I'm calling it IBS"

My Husband has been dealing with severe (6-9 on the pain scale) abdominal pain, DAILY, for the past 5 years. A day without this pain, is an incredible blessing. This pain, which he has described as getting stabbed hard over and over with the handle of a tooth brush, is accompanied by chronic diarrhea, nausea, vomiting (sometimes both stool and vomit have blood present), loss of appetite, anemia as well as some other possibly related symptoms, such as joint pain and itching.

I met him in 2008, so prior to that I don't know what was done, but since I've met him, we have seen probably 30 different doctors, so far we have only had one colonoscopy, one gastroscopy, one barium xray (after much begging and only just today) one regular xray, some blood and stool samples, nothing really significant. As far as I know, Crohn's can be a very difficult thing to diagnose. Did I mention My husbands brother has Crohn's, also a maternal uncle has colitis. My brother-in-law was almost dying before the doctors finally found the crohn's after three colonoscopies. It took him spiking a fever and being admitted to the hospital for the doctors to take his illness seriously enough to really look closely, and it was after a barium xray that they found it. It took over a year, he was 12.

After all this time and the tests and multiple doctors, I still believe he most likely has Crohn's disease, our doctors so far have just not been motivated enough to track it down, should we lay down and take the IBS diagnosis? or should we keep fighting?

Now we have a baby on the way, and my husband hasn't been able to hold down a job for two years because of his illness, are his symptoms indicative of IBS, I certainly don't think so. Has anyone else experienced something like this?

When I say daily I mean it, he wakes up in the middle of the night to vomit, he hasn't slept more than 5 hours a night for the past three years, between the cramping and vomiting and diarrhea, we have been living with this with little relief for a very long time, the only thing we have found after trial and error with many over the counter and prescription medications, dietary changes etc, nothing really helps all around quite like marijuana. He was recently prescribed Marinol, the synthetic pill form of marijuana, but it does nothing for his pain, helps the nausea, but not the pain... Does anyone have any suggestions for symptom control?

we will be following up with the doctor, but I'm at wits end, and now I'm loosing faith in the health care industry all together... and am now looking for a second opinion, weather that opinion is attached to a medical degree or not.

I appreciate anything anyone can tell me, no matter what it is, thanks for reading this

 

[Nico85]

It definetly doesnt sound like IBS, ive still not been fully diagnosed, the doc cant decide whether i have crohns or ulcerative colitis or proctitus, so he has just called it 'Colitis'.

My symptoms were passing lots of blood, toilet 15 times a day, anemia, lack of iron, back pain and weight loss.

Since i started my meds 5 years ago my symptoms are the occasional bit of constipation after a night out.

If i was a doctor id be certain your husband has severe crohns at an advanced stage. The reason is the pain and vomiting... although ive never experienced those symptoms, therefor my condition is swaying more towards UC, but most people on here with crohns complain of cramping, vomiting and pain. IBS is more irritable, constipation and uncomfy.

Your husband defo has IBD and i would say crohns.

Best of luck finding a doctor that sees that !

Nicky

 

[chrisnsteph1022]

Sounds like Crohn's to me, too. Did the tests not show ANYthing wrong?? Sometimes that happens, but with symptoms that severe, I would think something would show up on a test. You don't bleed with IBS, unless it's from hemmorhoids.

 

[Mayflower537]

That's horrible! Even if his symptoms don't worry the docs, you would think that the fact that his brother has Crohn's would cause them to at least spend some more time on your husband. I hope things get straightened out for you both soon.

 

[Splendorsolis]

Thank you Nico85, that is what I suspect as well, today I kind of gave my doctor the what for when he was going on about "people who suffer from IBS" I said that I want him tested for everything again, and some things, like whipple's disease I'm sure he hasn't been tested for at all. I want him tested and retested until we get a real diagnosis. Thank god we live in Canada or this could cost a fortune!

Hi, chrisnsteph1022, no, nothing but some excessive gas and anemia showed up, but from research I've done, it isn't uncommon for a scope to come back clean, because, (according to wikipedia) they can't reach the Ileum, where the disease usually sits, or the polyps are from an old flare up and thus no longer show signs of the disease, if our old doc only biopsied one or two polyps, it is likely they just didn't have enough of the disease left in them to show up, from what I read.

I think after what I said to our family doctor today he is beginning to see my point, I think doctors have a hard time believing that someone can suffer this way every single day for years and have nothing show up in a scope, therefore, there's no need to continue looking right?