I have no idea

[sunnyeloise]

So this is my story, I have posted it in the Undiagnosed Club as well.

So I have always had a "nervous stomach", getting D any time I had to wake up early (usually for a big event or outing) or any time I had a performance or test etc. I seemed to never have colds but any time any sort of stomach bug went around, I got it. I threw up pretty much every major holiday for (literally) as long as I can remember. In high school ('05 - '07) I went home after lunch probably 2 - 3 times a week on average.

In August 2009, I remember being at my dad's shop and my stomach kind of hurting a little bit on the ride side, about an inch to the right of my belly button. It was almost like a stabbing flutter that was intermittent (almost like a tooth ache). I remember him asking what was wrong and I said "oh it's just my stomach hurting a little bit... it happens sometimes). However, it started getting worse and worse. I generally have an extremely high pain tolerance and always have. (I had surgery on my foot when I was about 6 months old and was perfectly fine after the surgery but my mom asked if I could get some Tylenol before we went home and it turns out I had had NO pain medication at all and the stay was supposed to be 3 days but I was fine). But this pain, I couldn't even stand up. I had to lie down and I was ready to cry.

It started happening every night, to the point where I had to have my dad lay next to me before I fell asleep because I would be crying myself to sleep, scared I wouldn't wake up in the morning. Honestly, worse than the pain is having no clue what's happening or if you're dying. I tried Ibuprofen (my go to painkiller) and it had absolutely no effect, so I tried Vicodin and it had no effect either, and that's what was used after my wisdom teeth removal.

In September 2009 things were really bad and I spent 8 hours in an urgent care trying not to cry and when I got to the doctor they just said "oh you probably just have gas, take some Tums" which of course, I had already tried, with no effect. So then they said "oh here, take this" and shoved a cup in my face with no explanation of what I was taking or why. I drank it and my mouth went numb and everything from my mouth to my stomach was burning and I started crying and the nurse was so awful. It turned out to be lidocaine and Mylanta, because I guess they still thought I had bad gas. They sent me home with an appointment to follow up.

I went to the doctor, and I walked in, 5 foot 2 and 240 pounds and he said "oh stop drinking so much soda and improve your diet". Which is incredibly rude to just assume because of my weight. I told him I don't drink soda and my diet is quite balanced with grains and vegetables and such. I told him I loved broccoli and carrots way more than any potato chip. So he said "oh, you're eating too many vegetables, that causes diarrhea" and sent me on my way without running any tests or even looking at my stomach. I was just standing there like "are you kidding me?" The best "diagnoses" I got was "you probably have IBS take some Tums".

For a while, I thought it Celiac or gluten intolerance so I went on a gluten free diet. While a gluten free diet seemed to help, it was inconsistent even when I was sure I had been gluten free and eating gluten never made any symptoms occur or any of them worse.

So this September I started having the pains again. It feels like I am being stabbed in the exact same spot in my stomach over and over. Sometimes when I move it happens, sometimes if I am lying still. Sometimes I have eaten, sometimes not. I looked up a photo of the anatomy of the stomach and it seems to be the ileum area that is killing me. Sometimes it hurts right after I eat which I don't even think can be my small intestine (I ate a taco and timed myself. It took 12 minutes for the pains to start.). I also tried a liquid diet and I had TEA and it hurt my stomach/intestines/whatever it is.

Tylenol does help the pain sometimes and so does a rice bag but only when I'd rate it about a 2 or 3.

My other symptoms(?):
- I either have D or C, ALL the time. I don't even know what normal BMs are.
- My hands go numb and just like stop working.
- My hands also feel freezing and are like 2 shades whiter than the rest of my skin
-But my knuckles on my hands and toes (do toes have knuckles??) are like red, they look blistered but they're not. The knuckles on my fingers are also blueish and crazy dry and cracking and getting worse no matter what lotion, oil, salve etc I try. It's not even cold or dry here I live in southern California
- I have ataxia
- Head rushes all the time, sometimes when I am sitting but even worse when I stand up
- I am so pale
- I am cold ALL the time, even when it was 70 here, and I have been known to walk barefoot in the snow and be perfectly warm so this is extremely weird
- My temperature is always between 96 and 97.7, never higher
- Every time I touch my hair it's a game of "gee how much hair can I pull out of my head accidentally today?!"
- Some days I can't open my eyes when I wake up (after 10 hours of sleep) and have to try really hard just to sit up, I usually get really dizzy when I sit up to the point where I feel like I would just collapse if I actually managed to get out of bed at that point
- A general crampiness throughout my stomach
- I can feel anything slightly cold or hot go all the way down to my stomach it feels, no matter what
- My stomach or intestines always feel like they're fluttering, especially after I eat and where my pain on the right side happens
- VERY occasionally I will get the same type of pain on my left side but never very bad at all
- My ears are always ringing, it's maddening
- When my stomach is hurting I have to pee all the time

I am heavily investigating Crohn's because my mom thinks her dad and his brother had it, and her cousin was calling her family asking if her dad's symptoms were every diagnosed because she started having them. My grandma on my mom's as diverticulitis, and my cousin on my mom's side also started having really bad stomach/anal pain. Also, when I thought it was Celiac/gluten intolerance, I would sometimes be able to eat gluten with no symptoms and sometimes not. Crohn's is the only stomach issue I have found that can go into remission and come back.

Everything "wrong" with me always gets worse with the slightest bit of stress.

 

[Crohn's 35]

:welcome: to the forum. You dont say how old you are but I am assuming in your 20's, and doctors do not take young ones seriously, and there are rude doctors no matter where you are..been there done that. Losing weight, pain, temperatures, and the classic area is Ileum. My imediate family all have a form of IBD and my grandmother had Gastroenitis, and her cousin is s doctor and had crohns. It doesnt have to be in the family as many here do not but the symptoms of C and D are signs of narrowing and if you vomit that is another sign.

Get your doctor to get you to a GI specialist, you need treatment before something really goes wrong. I would also recommend that you try not to stress, that makes it worse, I know. Don't give up on getting answers, some docs have their egos get in the way. Glad your father believes in you. Does you mom support you too?

All the best, keep us updated and DO NOT give up! Stand your ground. Because it isnt in your head!!!

 

[SnowDay]

Oh my god. You really have a lot going on there . The thing that strikes me hard is the total dismissal of your problems that your doc is giving you. This is an absolute joke of a response and you need to kick this Dr. to the curb and search out someone who will listen to you.

Your symptoms sound very very serious and you need to be taken seriously to get the help you need. Good luck and sorry i can't be more help.

 

[Jessi]

Hi Sunny and welcome to the family.

I understand a lot of your symptoms. They sound familiar to what I go through with IBD and what my cousin goes through with lupus and IBS. I'm no doctor, but it sounds very likely to be autoimmune. It sounds like you are deficient in vitamins for sure.

I agree with the others, that you need to get a doctor who is specialized and who will take you seriously. This is no game. This is a human life that needs love, support, and treatment!

I hope you stick around and keep us posted on what happens. :hug: We're all in it together.

 

[PsychoJane]

Hi SunnyE,
The first thing I thought of when I read your description is Reynaud's phenomenon/sclerodermia(?), it also ressemble to systemic lupus for some aspect...
Could you be refered to an internist or even rhumatologist? I think that would be the most appropriate option as far as making the diagnosis because from what I read you have several and varied manifestation. It does not exclude crohn but it seems more like a systemic vascular type disease. I'm not a doctor either... I would try to get some ANA, ESR blood test, etc... I don't know how hard it is to see those specialist in cali though, hopefully you can get a specialist advice soon! Good luck!
~J~

 

[sunnyeloise]

Hi SunnyE,
The first thing I thought of when I read your description is Reynaud's phenomenon/sclerodermia(?), it also ressemble to systemic lupus for some aspect...
~J~

I am actually wondering if it is common to have either both Crohn's AND Lupus or if it's possible that something like Lupus would cause similar abdominal symptoms.

I looked up lupus and the rash that I get on my arm looks, to me, like a really mild case of discoid lupus. It's a circular pattern but with irregular edges, raised, and very dry feeling. They're about thumb sized patches (not an entire thumb just the pad of it haha). I attached a photo of a photo I found through Google that is apparently discoid lupus. Mine looks like this but less defined/severe and less clearly circular. Do you know anything about this?

From what I can tell from looking through images, it's not hives, heat rash, psoriasis, or eczema.

 

[PsychoJane]

Well according to the ABC of Rhumatology: abdominal pain, nausea, vomiting and diarrhea occur in up to 50% of the patients that has SLE at some point in the disease. Some has reported, subacute bowel obstruction, hepatitis, pancreatitis, etc. It's important to keep in mine that vascular disease can affect pretty much any composants of the body because, well, we have vessels everywhere. Therefore, if you can, it would be important to get that screen by a professional since certain of these manifestations can be serious if left untreated.
I can't do a diagnosis, I am not a health professionnal, I am just a curious university student and seem to have ease making correlations, so don't make your mind only from what I say, but I would definitively get that checked as many of the symptoms you have stated are part of the clinical presentation of SLE or lupus-like syndrome. You need blood tests and accurate screening.

If you bring that list of symptoms to a doctor and express your concerns of having a auto-immune disorder, I really doubt they will let you off with tums. I mean, it seems pretty obvious to me that something needs to be clarified and just by doing blood test they should be able to see indicators that rules them in or out.
These are what they usually test: full blood count (to check for anemia, inflammation markers (Protein C Reactive)(Sedimentation rate), white count, and serum creatinine (to check potential renal impairment),need the liver count too.Antinuclear antibodies (ANAs), anti-DNA, ELISA tests. They are likely to check for syphilis (as some if the blood indicator can trigger a false positive answer to it when systemic disease are in cause). Also they would usually ask for a urine test (to check for excess of protein or presence of blood).

Normally, if they do a part of what is previously said, usually, they should have an idea if something is happening or not. Those tests are indicators that would inform for both crohn or vascular disease.

Make sure they listen to you, bring a list of the symptoms, you can also discuss with them if they think it would be a good idea to check for these or not. Don't do their job, they usually don't like that, but if you walk in their office, that you have skin manifestations to show, that you mention that you have alopecia and don't know why and list all the other symptoms... show your concerns and they should hand you a list of blood tests. I really doubt they wouldn't... otherwise it would be close to negligence of their part.

 

[raesunflower]

I also think you should check out Lupus and get to a GI that listens to you as soon as you can (which I know is hard). Also, reading through some of your symptoms such as the hair loss, being cold and low body temp have you ever been tested for hypothyroidism or hyperthyroidism. Its a blood test. I hope you get some answers and start feeling better.

 

[sunnyeloise]

Thanks PsychoJane & raesunflower

I know nobody can diagnose me over a forum but now I know what symptoms to focus on when I go to the doctor (the ones that everyone seemed to mention), and then throw in the rest as a "well if it matters there's also this..." type of thing. Hopefully doctors will react the same way you guys have about them and know where to go from there.

But also if a doctor won't listen and says "take tums" or "ah it's IBS just watch your diet" type things, I will just go to this lab/clinic thing and ask for the specific blood tests that have been mentioned. Or talk with the doctor and say, are you sure you don't want to check for _____? It's a simple blood test and I'd feel a lot better ruling things out. (ONLY if the doctor dismisses it again, not straight away haha they would hate me).

Thanks guys!

 

[PsychoJane]

Let us know how it goes take care of yourself and I hope you will find a professional able to let you know what is going on so you can feel better soon! Good luck!