Ok though I might fit here.

[Clash]

I usually post in the parents forum because my 15 year old was diagnosed earlier this year but this is my story.
As a child I used to have these horrific tummy aches, I remember sleeping by the toilet so when the pain would start I would't have to travel far. The family GP said I had a nervous stomach and that was that. The stomach aches persisted through my teens but were less frequent. I would go through cycles of C but then when I finally went it would be D. The last episode before two years ago was in 2000, I was stressed about first day of classes and spent the morning in agonizing pain. It usually doesn't last long and I'd go about my business.
Two years ago, I had uncontrollable gas and pains in abdomin that were constant this coupled with burping and back pain. My GI did colonoscopy/endoscopy, results were gastritis and h.pylori so the h. Pylori was treated and the uncontollable gas and back Bain went away. But I was still dealing with stomach issues and bouts of C that ended in D. The following year I started having attacks, I would eat the this pain would start in my breadbasket(right in middle below right up under rib cage. They would last 2 min to a few hours and end with me vomiting, also the C ratched up and the pain was reminiscent of my childhood issues and became frequent. I went to GP he and me of gall bladder u/s it was clear and a HIDA scan which came back the low end of normal and the surgeon felt like this was the cause of my symptoms. The gall bladder when tested after removal came back normal structurally and through biopsy. Since this time I've still experienced the breadbasket pain that leads to vomiting and now the pain gets so bad with C then D that it is shocking my Vegas nerve and I usually come close to passing out. I've found that I can't eat out because I can rarely make through the meal without having to rush to the bathroom with pain and D. After my son was diagnosed by my GI with Crohns I mentioned to him all I had been going through since being treated for h. Pylori by him. He brought me in I showed him where the pain while vomiting and while C then D was at(under rib cage and left side of abdomen) He is thinking CD but I've never made that connection. He did breath test for h. Pylori-neg. Then last week did endoscopy/colonoscopy, there was gastritis in stomach and I told them lots of biopsies but since colon looked normal and TI they only biopsied stomach and duodenum, not sure why there but it came back normal and stomach came back neg. for h pylori. The nurse gave me the results doc hasn't read them over but he felt if this came back normal then we should do pill cam.
So sorry this is so long and excuse the typos I'm on my mobile. I don't really know what to think of what's going on, I'm in pain and I don't feel normal, lots of fatigue over last two years but bloods normal. I was wondering why he wouldn't do a small bowel follow through before pill cam but may I just don't understand exactly what he is looking for. I know everyone can be different with IBD but I don't see, besides the C, any similarities in my son's issues and mine, nor have there been many threads I've read that make me feel they are experiencing similar issues. After 2 years I just want to know something but I have this overwhelming feeling that each test is going to be more of the same...besides if your TI shows no inflammation where crohns is generally found what are the odds it is just higher up?
Ok now I'm rambling hope someone made it through all of this and if so thanks so much for your time and Hi!

 

[Cat-a-Tonic]

Hi Clash, welcome to the Undiagnosed Club. It sounds like you've been through a lot, and how frustrating that they hardly took any biopsies even after you told them to take lots! It is good that you're getting the pill cam, that is a very unique test and can see the entire small intestine. I didn't have SBFT before my pill cam and I was fine. Have you had any scans like CT or MRI? If so and if they didn't find any strictures on there, you should be fine. The risk of the pill cam getting stuck is very small, I think they told me something like 1 in 1000 people experience a stuck pill cam. So try not to worry too much about that.

And I would also think you might have some form of IBD, especially since your son has Crohn's. It does tend to run in families. Is there anyone else in your family with any form of IBD?

With regards to your question about location, the TI is the most common spot for it to manifest, but Crohn's can appear anywhere in the digestive tract - literally from mouth to anus - so it could easily be hiding out in your small intestine, and if so the pill cam will have a good chance of finding it. Good luck with it! Please keep us posted on how it goes.

 

[Txarmywife]

I'm sorry you're having so much trouble right now...sounds like you've been through the ringer. Your symptoms sound similar to mind. My problems started in my childhood as early as I can remember. Originally I was told I had a nervous stomach also, which as a fairly nervous child and over achiever...my parents didn't really investigate it much. Then when I was 12 I started having pretty significant symptoms. I was throwing up and pooping blood and lost a considerable amount of weight in a short amount of time. So I was referred to a GI at the Children's Hospital which ultimately lead to my diagnosis of IBD Undeterminate type. I currently am having similar left sided pain you're referring too and have D...with times were I do not go for a few days, maybe even a week and then when I finally do it's D again. I too have had them lean towards my gallbladder at times as a possible cause as a CT once during the hospital for kidney stones, showed fluid around my liver and "hyper dense material" in my gallbadder indicative of small stones. I was scheduled to have it out but due to my hubby coming home from deployement and starting to feel better, I cancelled the procedure. Anyways...my most recent scan (2008) did not show any inflammation on first glance but the surgeon took biopsies in various spots which all came back as positive for inflammation. Likewise I have had times were I have inflammation in my small intestine and stomach which was shown via GI Series as a child. So although your symptoms may not be exactly like your son, it could be that you do have a form of IBD or something similar which could be causing your symptoms. I certainly would have them investigate it further whether by GI Series, pillcam, etc at the very least to rule out inflammation in the small intestine.

 

[Clash]

Cat-a-Tonic - thanks for the welcome!!! About the CT, that is another reason I haven't thought IBD. About 2 months after I had my gallbladder removed, I started running a high fever and continuous vomiting, my husband ended up taking me to the ER and they ran bloodwork, my WBC was 1.8 and my liver function tests were extremely high(this was October of last year) they did a full abdominal CT and I still have the report, the CT was completely normal. I battled whatever this was for about a month, my GP thought it was an ehrlichiosis disease which is a type of tick-borne illness, we had to send the tests off to another state for this type of test and both times it came back normal. I eventually gained my strength back and my counts came back to normal, and although it concerns me that I was immunosuppressed with no reason as to why the doctor said he wasn't concerned with what caused it as long as it was treated and I regained my health. So even though I haven't had a recent CT I do have that one from October and it didn't show any inflammation at that time even though before, through and after that I was still having the C, pain followed by D. Oh and one other symptom and the reason the GI wants to keep looking is that not all the time but at times there is this jelly like substance in my bm(sorry tmi) and he said it is mucous and if there is mucous present that means there is inflammation somewhere in your digestive tract and it has to be investigated, has anyone else been told this? Thanks for all the advise, this forum has been such an awesome form of info and support for both mine and my son's issues!

Txarmywife- I have actually read a couple of your posts because I have felt your symptoms have come the closest to what I have experienced at times. I just called my husband to let him know what the nurse said about the results of the biopsy of my stomach and duodendum were and he said he spoke with the dr after my procedure and the doctor had taken four biopsies, the stomach, deudendum, TI, and colon, why hadn't I gotten the results of the other two. It was too late to speak with the nurse again but I left a message on the voicemail asking about those results and maybe she will call me back tomorrow? I am assuming they were normal too otherwise I think she would've mentioned them unless since the doctor hadn't read them yet she wanted to wait? I don't know. I will definitely do the pill cam if it is needed, I hate the prep it seems to cause the extreme cramping and pain and vomiting that I try so hard to avoid but I am ready for some answers, it just never occurred to me that I was dealing with one problem that wasn't getting resolved since each time I went for testing they treated me for something..ie...h. pylori, gall bladder. Thanks for the support and welcome!!

 

[Txarmywife]

I would def call back tomorrow and ask or make a follow up appointment to go over the results with your GI. If you're still suffering like this they need to come up with a plan for you because obviously what they're doin isn't working.

You mentioned "jelly" bms...I took have that fairly common. When I have really bad days of D it gets to a point where I'm not longer passing poop anymore just the jelly/mucous and boy is it uncomfortable!! I can relate with you when you say you didn't think you had something else going on because you were being treated for another condition. I think that's often te problem when you have multiple problems. It's difficult to pin point symptoms to each. Sometimes doctors have to take risks and go on what's the most likely cause. For instance when I was 12 (prior to IBD DX) I had severe right sided pain and vomiting. Naturally they leaned toward my appendix. It appeared fine on the u/s but they did laparoscopic surgery and removed it. Pathology report came back that it was diseases on the inside and "suspected Crohns" in the appendix. It wouldn't be until later that I'd come to learn I had ibd. It's usually after the fact that all the pieces to the puzzle begin to make sense. Sometimes though some of us have a multi piece puzzles that take longer to figure out...like those impossible 5000 piece ones. I hate puzzles btw.