New Member

Hello everyone…

I’ve been checking out the forum for a while. I was reading a story about another new member who had the same description of pain that I’ve had, so I decided to join. Well, my story starts with really bad heartburn, which also developed into chronic bouts of D. My visits to the bathroom also increased over the years. I’ve had all the tests- upper and lower GI tests, ultra sound exams, CAT scans with and without contrast, colonoscopies, liver biopsies, parasite tests… I’m probably missing something. The newer symptoms have been blood in stool, severe nausea, sharp, and dull gut pain, and the same in my lower right stomach, eye pain, bloating, severe weight loss, and then weight gain, hip pain, and other joint pain, my record to the bathroom is 24 visits in one day… oh and mouth sores that last for over two weeks. And being fatigued when not even doing anything all day. I’ve seen about 6 different GI doctors in the last 15 years. My grandma passed away years ago from stomach, and small bowel cancer. They don’t know if it started in the stomach, and spread to the intestines, or vice versa. Apparently she was never diagnosed with any IBD, because she never went to the doctor, even if she was deathly ill. That’s why when she was diagnosed with cancer… it was too late, she passed away a about a month later. I read a post by someone who described their pain as needles in the gut, and I’ve been trying to describe it to other people, and my doctors. I’ve got a GI doctor that’s a total tool.. Who seems to think I’ve just got bad IBS. I’ve been on so many different medications, and with some luck, but the calmness, and peace never last. And that’s why I’m SickNtired of being sick all the time. Thanks for reading part of my story, Jr.

I'm sorry to hear that you've been so sick! I hope you get some relief soon! Welcome to the forum

-Karissa

Hi JR and welcome. If you are passing blood, then your doctor is completely off base with an IBS diagnosis. You don't bleed with IBS. I know you have seen 6 doctors, but I think it is time to move on. Your symptoms all align with IBD, and the blood is concerning. You need to find a doctor who will give you proper care.

Hiya Jr
and welcome

Yes, you don't bleed with IBS or lose weight.
And have you told these docs about your Grandma?
And yeah, we do want to know where you are, it's important, so that we can guide you in the right direction. There are people from all over the world on here, some might be able to help with a new hospital or gastro.
hope you get some relief and help soon, you shouldn't have to suffer like this.
lotsa luv
Joan xxx

Hi JR and welcome! Sorry to hear about your problems and lack of a clear DX.

Joint pain and eye pain are common side-symptoms of Crohn's. And blood. And bloating. And pain. All of these should be mentioned to your doc and if your GI doesn't know that eye pain and joint pain are symptoms of Crohns, run, don't walk to a new GI.

Like Joan says, it's helpful for us to know where you are from b/c health care systems are different all over the world. If we know where you're from, we can better offer guidance.

Good luck!! - Amy

I agree with the others!! I think the only thing you lack is a GI with some gnads!!! All those symptoms and the possible family history should scream IBD loud and clear! With the right treatment, maybe you won't be SickNtired!

Thanks for reading part of my story...

Yeah, weight loss, and bleeding don't go along with IBS, but I think when you start off with multiple visits to the bathroom, and sometimes right after eating. I think the doctors just want to label you with IBS. Which was part of my second part of symptoms… I guess. I think it started with GERD, bloating, discomfort. Then progressed to all this mess… I'm trying to make sure I put all the answers in here for you guys... I told the doctor about my grandma during my last visit, and didn’t get any response, just a headshake. It’s kind of funny because my regular doctor is an internal medicine doc, and he gave me the UC diagnosis. The GI doc said, why are you taking Prednisone?My reponse-(I don’t write the prescriptions. I just take them and wait to see what happens) The highest amount was 40mg.. down to 10-20mg.(10 when the GI dr. saw me) And Taking Hyoscyamine 3 times a day. I had been taking lomotil for years, and my doc had me try something else. I've been on Asacol, and bunch of other different stomach meds? Don't have my list. Cortisone suppositories, sprays, cream. I’ve played the medication game before… Lets see what if any of the meds are causing symptoms instead of helping. That’s always a fun time. He told me to just go back to lomotil, and keep taking Pepcid. And apparently I have internal hemorrhoids... sorry for the extra info, but it goes with the rest of the story. And for the last 6-7 years I had random bouts of blood in my stool that last for several days at a time.(dark, bright red) He said my bleeding is from hemorrhoids. I said if I’ve had hemorrhoids this whole time why haven’t the other doctors told me or even listed them in the colonoscopy reports. He then told me that they all must have missed them, or forgot to list them while performing the exam. He seriously said that!!! The thing is I never associated my eye pain, and occasional blurry vision, and eye sensitivity to my stomach. And the hip pain.. which I thought was really strange, because one day I had the worst pain in my left hip, and it was worse when lying down or on my side. I could bend, stoop, and lift with a little discomfort. I had x-rays and they came back normal. The doctor wanted to send me to physical therapy for my hip. My ex was in nursing school at the time, and told me to ask my doctor about Crohns. She knew for years about my stomach issues, and said it sounded to her like UC, but more like Crohns. Well, my doctor at the time said he couldn’t give that diagnosis (family practice dr.) And that a GI doc would have to make that call. Its frustrating when all these tests come back with nothing wrong. :ybatty:The GI doc told me he didn’t think I had UC or even Crohns. Then I showed him a picture with a sores in my mouth that lasted just over 2 and half weeks, he was like oh, there might be a small chance that you do have Crohns.
He asked what meds I was on at the time of the pic. And at the time I was only on Pepcid, Hyoscyamine and the occasional suppository, and cream. I keep a chart of what meds I take. The thing is all of these symptoms have been in my records for years…. And why didn’t he catch all this?? :ymad: I said look, I had problems for years with my stomach, and all these meds have not worked…. Is it possible because it’s the wrong diagnosis, and the wrong medication? Simple honest question,,,, He said lets do a CT scan and go from there.. Well I have no plans on going back to that doctor. And I live in Phoenix… and thank you for listening/reading to my issues!!!!

Oh my... that sounds like me but I have gone through the hemmorhoids, hip pain, D, eye pain etc but in one month! It didnt even give me a chance to process what was going on. My colonoscopy came out good but WHY am I in so much pain? I hope you find relief soon. I am still laughing at your post about someone mugging your prep haha I needed a good laugh:rof: