Hello I'm New Undiagnosed And NEED HELP!!!

[HurtingChild1988]

Hello my name is Aubrae...
I have been suffering severe bowels/stomach problems for many years and even though I have been to doctors...no one can give me an answer to what is wrong with me other then I have anxiety and fibromyalgia. I have had bouts of good health and during those times have tried to pack in the most nutrition that I can however...my sick bouts are getting longer, the pain in my abdomen is getting worse and I am sick and weak and an invalid almost all of the time. I have lost 20 pounds in a year and I am a scary 60 pounds. I want to eat, I want to get better but how can I when I'm in pain? I have this list of symptoms...does it sound like Crohns to anyone?

Symptoms

1.
SEVERE tightening in the abdomen with a feeling of engorged sore veins or nerves around belly button, especially on right side.
2.
Tightening in the lower back around the tail bone, it becomes tighter when I am unable to pass gas or stool. It tightens to the point where it’s painful to stand up.
3.
Severe stomach pain on upper right side when I eat/drink ANYTHING, I also break out into a sweat and get the shakes.
4.
Panic attacks for no reason. My tail bone seems to send a panic signal whenever I hear the slightest sound and I can feel my nerves tense up in the back of my head to the point I am dizzy.
5.
Severe pain in upper shoulders. The “mother load” is what I call them because from there that is where it all seems to go wrong.
6.
Unable to regulate temperature. I am either freezing or roasting or both. The nerves in the back of my head become so over-heated I must put an ice pack on it to calm it down.
7.
Strained nerves in stomach? I can feel a sore tearing or pulling in my stomach whenever I stretch out and whenever I seem to stretch out I feel better and my digestion/stomach pain is better.
8.
I ALWAYS feel better once I pass stool and gas, even burping will diminish if not cure ALL these symptoms.
9.
Weakness in legs and arms and must have my arms remain at my sides if I can help it because to lift or reach for something I feel something tightens the soreness in my abdomen.
10.
When bowel function seems improved I find the urgency to pee more and my vaginal opening emptying out bowel contents such as gas and other residue.

11.
Raw chewing feeling in upper right side around belly button until gas/stool is released.

12.
Upper abdomen feels stuck to my insides and unable to drain to my lower intestine. This can change with movement, lifting, standing, walking, and being cold, will tighten it.

13.
THIRSTY and craving salt after eating or whenever the bowel is trying to hydrate itself. Once stool has passed the feelings of thirst and the salt cravings are gone.

14.
Sweating during eating and intensely tired afterward.

15.
Hot/cold flashes during eating or during bowel movement, I become very hot before I go to the toilet and become very cold during the actual movement.

16.
Tail bone/pelvic/vaginal tighteness and pain after eating, before, during bowel movement.

17.
Intense tail bone,pelvic pain and feeling cold after bowel movement.


Please does this sound like Crohns to anyone, I have Fibromyalgia to add to these symptoms. Please help me, no one else will. Thankyou...

 

[Jennifer]

Hi and welcome to the forum!

You mentioned seeing "doctors," were any of them a GI specialist? Have you had any tests done at all such as a colonoscopy, MRI, MRE, pill cam, small bowel follow through, blood work etc? It's possible it could be Crohn's but you really need testing done and by the right doctor. Crohn's can be hard to diagnose so if you run into GI docs who aren't doing their job then you need to keep seeing others until you find one that's willing to help you. There are many good ones out there, you just have to keep searching. Might I also ask where you're located?

Edit: Will edit my post since I see you edited yours.

A few more tests to add to the above would be an upper endoscopy, CT scan and an ultrasound (basically every test under the sun to find out what's going on inside your bowels be it inflammation, scar tissue, fistulas, adhesions etc).

Your number 10 on your list is concerning. So you're saying that you have fecal matter and gas coming out of your vagina correct? To me that sounds like a possible fistula (forget the exact name for that type of fistula). In this case not only do you want to see a GI but you may also want to see a gynecologist. I know some members on the forum had their fistulas found by having their gyn take a look.

When you have blood work done you'll want to have your inflammation levels tested and all of your vitamin levels such as iron, B12, vit A, B, C, D, E, magnesium, potassium and zinc as being low or deficient in any of these can cause a wealth of problems (including depression which goes hand in hand with anxiety).

 

[HurtingChild1988]

Hi and welcome to the forum!

You mentioned seeing "doctors," were any of them a GI specialist? Have you had any tests done at all such as a colonoscopy, MRI, MRE, pill cam, small bowel follow through, blood work etc? It's possible it could be Crohn's but you really need testing done and by the right doctor. Crohn's can be hard to diagnose so if you run into GI docs who aren't doing their job then you need to keep seeing others until you find one that's willing to help you. There are many good ones out there, you just have to keep searching. Might I also ask where you're located?

Edit: Will edit my post since I see you edited yours.

Hello,

I added my symptoms aswell. You wrote me before I got a chance to edit them. Yes I have had a CT of my abdomen and the sheet the doctor gave me suggested Crohns but it never went any further than that...for some reason. I shall reply to you once you've seen the symptoms. Thankyou.

 

[Jennifer]

What exactly did the CT scan find? Was this test ordered by a GI or a general practitioner? Have you contacted them for a followup appointment (if its a GI) or have you asked for a referral to a GI (if its a GP)? Edited my post above.

 

[HurtingChild1988]

What exactly did the CT scan find? Was this test ordered by a GI or a general practitioner? Have you contacted them for a followup appointment (if its a GI) or have you asked for a referral to a GI (if its a GP)? Edited my post above.

It said that there was a small kink between my duodenum and my bowel but nothing "remarkable" The test was ordered by a wack job bowel doctor which is no longer my doctor since I've moved to a different town. I don't know what to do about that, its so hard to find a doctor let alone a bowel one (I'm in Canada) and its also hard to get anyone to believe me. They look at me say "get help you know for anorexia" and totally ignore what I tell them. My blood so far has been good, God knows I've had it done a 1000 times this year while trying to figure out what is wrong with me. I have never had an inflammation blood test? None was ever suggested to me. If it were that easy I would have done it by now! Thankyou...for replying.

 

[Jennifer]

Here's a list of common blood tests done: http://www.crohnsforum.com/wiki/Blood-test-codes-and-results-explained Most common ones I have done are CBC and CRP.

What part of Canada? We've got some members on the forum from Canada so maybe some of them might have some suggestions for a good GI in your area (or nearby, my first GI was 4 hours away from me, best GI I ever had).

 

[happy]

HurtingChild1988,
I am sorry to hear how awful that you have been feeling. I think that there is an illness that involves some of the difficulties with temperature regulation and Gi symptoms that some people were talking about in the parents forum. Perhaps he member kimmidwife could help you out. If she gets flagged from this post perhaps she will respond.

 

[Crohnie86]

I'm not an expert, but it actually doesn't sound like Crohn's to me.

You say that passing stool resolves symptoms. I'm not sure if that's common for Crohn's patients. How often do you pass stools?
Also, when you say stretching out seems to alleviate symptoms. I also havent heard of that with Crohn's either. From what I understand, Crohns is really uncontrollable during a flare, and you really can't do much to alleviate the pain.

The tightness around the belly button sounds familiar to me, but not for Crohn's. I remember reading about that somewhere. Have you tried to research that symptom specifically? I remember reading about a condition specific to that symptom, but it escapes me what it was.

Have you tried researching each symptom specifically to see if they all point to one thing? Trial-and-error type of thing?

Try keeping a journal of what you eat as well.

Also, and I think most importantly, try to control your anxiety as much as possible. I tend to be an anxious person as well, but have learned how to control it quite well. Being outside in nature, whether its going for a walk or a simple bike ride, is a great way to maintain self-control. Meditation can also really be calming, and things like yoga or pilates can be great. Find relaxing hobbies. Anxiety can most definitely take any symptom you have, and intensify it drastically.

 

[David]

Hi there and welcome

One number jumped out at me in particular. #10. Am I understanding that you have fecal matter and gas from your bowels exit your vagina?

All my best to you.

 

[Aussie]

Hi HurtingChild, to be honest, most of your symptoms are quite non-specific, a few points stand out.

1. You have lost 20 pounds, which is a reasonable amount, but that was quarter of your body weight! Something potentially serious is happening.

2. Your symptoms improve when you pass wind or stool. This is one of the Rome criteria for IBS. Once you mention this, a number of doctors will pidgeon hole you into the IBS group.

3. However, as a number of other people have mentioned, you have faeces coming out of your vagina - so you have a rectovaginal fistula. Unless you have significant obstetric trauma, then this is fistulating Crohns disease until proven otherwise!

You need an urgent EUA (examination under anaesthesia) to look into the fistula, followed by a colonoscopy and an MRE.

You're probably significantly malnourished, an inpatient stay to fast track these investigations is warranted.

Good luck!

 

[poopmachine]

Hi, and welcome to he group!
I read in your story that you have fibromyalgia, i have a good friend who has fibro and has had it for years. She says that sometimes she experiences bowel issues due to her fibro. She has changed her diet around in order to prevent some symptoms from occuring. She has become totally gluton free, and also totally dairy free. These diet changes could help with the fibro but maybe also with the bowel issues? Just a suggestion, maybe look into it and talk to doctors or a dietitian about it? Since fibro affects the muscles of the body it may be affecting the muscles of your bowels etc. Who knows? But thought i'd throw those suggestions out there. Hopefully you are able to find out what is causing these symptoms as some of them are scary! All the best!

P.S. I also live in canada, in a small northern ontario city making doctors and specialists hard to find as well! oy, what a pain it is! why cant the doctors come to these areas people in them need there expertise as well!