Symptoms & Doctors

[sunnyeloise]

Hi everyone... I understand that nobody can diagnose anything over a forum but I don't have any medical insurance and the doctors at the country hospital are absolutely rude and do not take me seriously and I don't know what to do. I am trying to investigate my symptoms (as related or unrelated as they may turn out to be) so that maybe I can kind of find some "proof" and make somebody listen to me. I apologise for the length of this but I have no idea what is related and what is not!

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 bruise really easily now
- I have a weird rash almost like ringworm on my inner elbows and arm and then on the backs on my legs
- Lots of headaches that are constant and mild and don't go away with tylenol or excedrin
- my eyes sometimes feel dry or like they're sticking to my eyelid and sometimes I have to focus really hard for my (20/20) vision to be clear

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.


Do any of these symptoms happen to anyone else or sound like Crohn's or even something that mimics Crohn's?

What can I do about the doctors? Especially with no insurance. I weigh 190 now thanks to really hard work (the only thing that makes me think it couldn't possibly be Crohn's is my weight problem) and I am considering going to the doctor saying "oh help I've lost 50 pounds in like 2 months check my stomach out" to see if they take me seriously but if I lie it could end up them thinking it's something else. Or even still not be taken seriously because I am still overweight.


If anyone actually reads all of this, thank you so much.

 

[Cat-a-Tonic]

Hi Sunny, welcome to the club. It sounds like you've got a lot going on, poor thing! As for the lack of insurance, are there any free clinics near you? Unfortunately it's pretty much impossible to self-diagnose with this kind of stuff, you'll need scopes and bloodwork and can't go by symptoms alone, as this type of symptom could be a few different things.

The thing you described about your hands being cold & different colors from the rest of your skin, I'm wondering if that could be Raynaud's. Check out this link and see if this sounds like what you've got going on:
http://en.wikipedia.org/wiki/Raynaud's_phenomenon

As for no weight loss, if you do have Crohn's or colitis, not everyone gets weight loss. Not everyone gets every "classic" symptom and everyone's symptoms are different - even two people with Crohn's in the same spot won't have the same symptoms. That's one of the things that makes illnesses like this difficult to diagnose, and why you really can't self-diagnose based on symptoms. My understanding is that weight loss is generally tied to where your illness has manifested in the digestive tract - I believe people with illness just in the colon tend not to lose weight whereas illness in the small intestine more often does cause weight loss. Again, I'm not 100% sure of this, and everyone's symptoms are different. Where you described your pain, I'd think it's in the small intestine and not the colon.

As far as eating and then having pain just a few minutes later, oh yeah, that can happen! I used to take a peppermint oil supplement, it was in capsule form. I could sometimes time my "transit time" based on that peppermint capsule. I'd take it and sometimes I'd have diarrhea 10 or 15 minutes later - and my poo would smell minty. If you're suffering from diarrhea sometimes, things can move VERY fast though the digestive tract so it wouldn't surprise me at all if you eat and then feel pain 10 minutes later.

Please don't take ibuprofen! It's an NSAID which can be very bad if you do have Crohn's or colitis. Tylenol is pretty much the only safe over the counter pain med, please please avoid ibuprofen and aspirin! They can make things even worse!

I hope my response helped a bit. I hope you can figure something out with a lack of insurance. I know there's someone on the forum in California who gets state insurance, I believe she said it's called Medi-Cal. You might want to look into that. Good luck, please feel free to hang around the club! The other members here are so supportive and wonderful, and they all can relate to what you're going through.

 

[sunnyeloise]

Thanks Cat-a-Tonic! I tried to mention pretty much everything that I feel isn't normal with me because you never know!

I don't know if it could be Raynaud's but my hands don't look like that picture on Wiki. It's more like pale hands and then the skin over the bumpy part of each knuckle is red, what I would assume it would look like after someone punches something hard.

It's good to know that not everyone has weight loss with Crohn's or colitis because I always wonder if I am just crazy or something because every site about Crohn's mentions rapid and severe weight loss and I have to work out like crazy to lose tiny bits of weight. There was one time that I was visiting my aunt out of state and had a lot of D (it was a stressful environment for me) and ended up losing about 13 pounds in about 2 weeks but I didn't even think about this. Maybe it's related, maybe not.

Wow 15 minutes for the whole digestive tract that is crazy! I should find some sort of test food and eat it once and see was happens.

I stopped taking Ibuprofen early on since only Tylenol works, making Ibuprofen pointless. I miss it though because it's the best for any other type of pain!

You helped a lot just to basically reassure me that I'm not silly! Even with Medi-Cal I would have to use the county health care system and so there are a lot of poor people there, people from rehab, people from the prison, etc., so I think that is why they are so rude and apathetic toward the patients. They just don't care.

Thank you!

 

[lookame]

Hey there I didn;t read through all of your symptoms but I read your "other" symptoms

You mention a weird rash like ringworm. Before being diagnosed I had small red spots about the size of a quater with white bumps inside ot which really itched. They were all over my body and I went to the ER for it. I was referred to a dermatologist and got some creme like lotramin. About a 2 or 3 months later the bloody diarreah started(that really stood out to me, I've never had ringworm or any infection of the sort so I think it has something to do with my disease)

A lot of your other symptoms stand out to me as your either anemic and/or dehydrated. Things where you state your cold all the time stand out as anemia then you state things like your knuckles are cracked which tells me your dehydrated. These can be the case with diarreah because your not absorbing water properly.

As for the rudness of your doctors. I do understand that. I am on something like medicaid (it's considered a managed care plan but government paid) because of that I find ot very hard to find a doctor who gives a crap. I've been laughed at and told I'll never get better when my PCP heard I was hospitalized and diagnosed with UC(or crohns I'm not 100 percent sure which it is) The fact is the burden is on you to give them a clear veiw of exactly what is going on with you. My GI exclaimed I was in remission even though I was still bleeding, after my last appointment I told him clearly everything which was going on from how many stools I have to what color blood was being passed to even being in the postion where I'll pass gas and blood and mucous comes out too. After I painted that loevly picture he schedualed a sigmoidoscopy and found after a year of treatment I still had moderatly active disease(yeah remission huh? lol)

From now on keep a journal of your symptoms. When you use the bathroom write it down what you passed(was it formed, diarreah, soft and mushy did it float or sink?) and if theres any blood or mucous or if you can see undigested food. When you have pain write down the day and time(was it after a meal? what type of pain? Sharp and stabbing/ Dull? Achy?) and where you feel the pain (right side by the belly button? left side by your hip ect). Write down what food you eat and when and what you take for pain and at what time. Even include antacids for acid reflux. This symptom journal will help paint a picture for even the doctors who could care less. It will focas them and make them "see" what you are going through though they may not care until you see blood...sometimes I feel like that is the only symptom that gets the doctors excited and make them want to look further. You may even get a better understanding of your own body with this journal.

Good luck

 

[Bowmancrew]

My first three thought are thyroid, Lyme disease or food allergy. Your rash and knuckles sound like an eczema. Thyroid issues can cause bowel issues, coldness, dry skin, dry eyes, dizziness, fatigue and weight gain or trouble losing it. Lyme disease can mimick diseases like celiac. And I am not sure how you did your gluten free diet but it is difficult to get all gluten out. It is in MSG, caramel coloring and malt. And there is a lot of issues with cross contamination. Such as using the same toaster as someone who makes gluten bread. Some celiac also have issues with other foods. You could be doing good avoiding gluten and not having reaction but you drink milk and then you have a reaction. Many pills have flour on them to keep them from sticking. Just like anything celiacs react differently and their severity levels are different as well. Food allergies can cause all of your symptoms. The journal idea is great. It might be good to also keep a food journal as well. The only bad thing is sometimes food reactions take a day or two to show up. But having a journal of your symptoms and food is never a bad thing. I can't give you much detail on crohns as I am still learning about that myself. Cat- if I do have crohns I would have it in the sm bowel and don't have the wgt lose . That would be the one thing I might want from the disease

 

[David]

If you had previously been diagnosed with Crohn's Disease I would think the following based upon your symptoms:

Iron Deficiency Anemia - lots of symptoms of this
Peripheral Neuropathy - the hand numbness

You need some real tests done. You need a blood workup done and you need to see a gastroenterologist. I realize that's not easy without insurance but it needs to happen.

Keep us updated!

*hugs*

 

[sunnyeloise]

If you had previously been diagnosed with Crohn's Disease I would think the following based upon your symptoms:

Iron Deficiency Anemia - lots of symptoms of this
Peripheral Neuropathy - the hand numbness

I checked these out and iron deficiency anemia definitely seems to be possible, which is odd because hemochromatosis runs in my family. I will see about trying to eat more meat and plant based iron and see if I feel any better.

 

[sunnyeloise]

And I am not sure how you did your gluten free diet but it is difficult to get all gluten out. It is in MSG, caramel coloring and malt. And there is a lot of issues with cross contamination. Such as using the same toaster as someone who makes gluten bread. Some celiac also have issues with other foods. You could be doing good avoiding gluten and not having reaction but you drink milk and then you have a reaction. Many pills have flour on them to keep them from sticking. Just like anything celiacs react differently and their severity levels are different as well. Food allergies can cause all of your symptoms.

I actually bought my own toaster, cutting boards, cooking and eating utensils, pots, pans, plates, etc. I didn't drink any soda with caramel colouring or take any pills. I also didn't eat anything I didn't cook myself which normally was something like bell peppers and rice, salad, or fruit. I was extremely careful. I also did not drink milk because I noticed it made my stomach issues worse if I drank it while my stomach hurt. I can drink it now without any noticeable worsening of symptoms.

I wish I had Celiac because then I could just avoid gluten and be fine, argh.

 

[sunnyeloise]

A lot of your other symptoms stand out to me as your either anemic and/or dehydrated. Things where you state your cold all the time stand out as anemia then you state things like your knuckles are cracked which tells me your dehydrated. These can be the case with diarreah because your not absorbing water properly.

As for the rudness of your doctors. I do understand that. The fact is the burden is on you to give them a clear veiw of exactly what is going on with you.

I was going to say I don't think dehydration is possible because I drink like 3 litres of water a day without sweating it all out or anything but now that I think about it, my knuckles aren't as bad, nor are my dry lips or anything like that and I have been constipated. Maybe I was no absorbing it properly! I will try to make sure to monitor that, thank you!

I don't understand why doctors don't seem to take me seriously. I saw 2 nurses and 3 doctors in 2009 and none of them even pushed on my stomach to see if it could be appendicitis. Awful care. I am hoping to try and kind of compile a list of my symptoms that are likely to fit particular things and go back and demand testing to rule them out. Perhaps I can threaten to sit there and sing until they run the tests :ylol2:

 

[DustyKat]

If you do have ileal Crohn's then you may well have malabsorption and diet alone won't correct the Vitamin and mineral deficiencies you may have.

I know you have said you don't have insurance but perhaps as Cat mentioned you can get some type of aid. Do you have a family doctor that can run blood tests? I assume they would be the cheapest tests to start with and it certainly is a good place to start. You really do need to have a CBC and CMP? (I think that's what you call it there) done plus CRP, ESR, B12, Folate, Iron Studies & Vit D.

Dusty. xxx

 

[DustyKat]

Do you keep a diary of your symptoms? If not have a look at the one we have in our wiki..

http://www.crohnsforum.com/wiki/Diary-Inclusions

Keeping a diary certainly can be helpful when dealing with health professionals.

Dusty. xxx