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10-08-2011, 09:14 PM   #1
Little.cat.lady
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New and distraught.

Hello everyone,

I'm so happy that I've found this forum. Lately I've felt so hopeless and alone. While I have very loving and supportive people in my life, most of them are in very good health and cannot understand why I am always sick. My father tells me, "You're fine" and chuckles nervously. My mother frequently says, "Mind over matter" to me because she thinks we can overcome anything if we put out minds to it. While this can be true for some things, unfortunately an illness doesn't exactly work this way. Luckily my fiancé always tries to be understanding.

The most unfortunate part of this is that my doctors are leaving me wondering, insecure and confused. They've managed to make me feel like I'm completely insane. Maybe some of you can help me ask the right questions or mention the correct things to my doctors to help them find the answers?


Here's what I've been dealing with-
~Severe upper abdominal pains. (Stabbing with continual dull ache)
~Sore sides around the lower ribs.
~Belly cramping and twitching.
~Constipation, I go 3-5 days without a bm all the time. (Diarrhea rarely)
~ALWAYS nauseous.
~Flares of consistently vomiting for days at a time, I cannot stop even when I'm thoroughly dehydrated.
~When I finally have a bm I want to vomit at the same time.
~ALWAYS tired and weak.
~Dizziness and feeling faint often. I have fainted 3x in the last year.
~Loss of appetite, I've lost about 15lbs in the last month or so. I'm already very slim.
~Achy joints.
~Tarry stools and Pale greenish grey stools.
~Stiff muscles.
~Enlarged lymph nodes in neck. My chiropractor actually discovered this, I told my regular doctor and she said it wasn't a big deal and that I probably have a cold. I don't but she doesn't seem concerned.
~Cold hands and feet.
~Lots of white mucous following stool.
~Itchy skin, reddish pink rash on back and limbs. Cortizone helps keep it at bay but it doesn't stop all the itching.
~Chills sometimes shaky.
~Night sweats and waking up at night in pain.
~Low fever occasionally, around 99. Otherwise a low temp of 96.
~General malaise.

(Side note- I eat very healthy- no red meats, low dairy intake and I often eat gluten free choices. I've played with my diet for the past few years and any change I make doesn't help or worsen the problem. Also, I had E.Coli as a child and my appendix has been removed.)

Most of this has been going on for years. I'm so tired of never getting anything out of my doctor. I have switched doctors 5 times in the last two years because all I get of them is "You are just stressed." The next doctor that says this to me will get an ear full. If there is any reason for me to be stressed it's because I feel absolutely awful and no one takes me seriously.

A month ago I finally convinced my doctor to send me to a specialist. I had my consultation with a GI a week later and he decided to do both upper and lower scopes set for a later date to give me peace of mind and since my family has a history of similar issues. He ended saying that it's probably just Psychogenic vomiting syndrome. Which to me translates to "When you stress you throw up." I'm so very sick of hearing things like this. I researched it anyway and it doesn't sound right at all.

About four days after that I ended up in the ER because I was vomiting profusely for 48 hours and completely unable to hold down ever water. Although this happens very often and I had never gone to the ER for it prior, when I noticed bight red blood in my stool I called my GI and they told me to get to the ER right away. They ran a bunch of blood work and took a urine sample, which both came up fine aside from dehydration. Then the doctor did a very awkward test to see if I was still bleeding and he didn't see anything. He mentioned a tag that resembled a past hemorrhoid. I told him I have never had any to my knowledge. He left the room and returned saying he had put in a request with my GI to do multiple biopsies of the tissue in my organs. He mentioned that we may be looking at Crohns, a gluten intolerance or some other auto immune disorder. Unfortunately the ER doctor was the only doctor I've ever encountered that seemed to be genuinely concerned and recognize that this is not as simple as "stress." but he obviously can't be my regular doctor.

I just had both scopes done yesterday and guess what? Another normal result. I was loopy when I heard this and started to cry and flat out asked my GI "Well then why am I so sick? What is wrong with me?" he said "Well we can discuss further when you come back to see me." and chuckled. My next appointment with him isn't until December. I am still awaiting the biopsy results but it looks as though they only did one biopsy of my duodenum and no other area. If this comes back as normal as well I am going to be ready to give up. This has affected my entire life so drastically. I haven't been at work for two weeks because I am so weak from barely eating and throwing up so often among many other symptoms. Everything just continues to get worse.

I am in so much pain and I just want advice and answers. The doctors I've met have mostly made me feel like I've lost my mind. Any advice would be wonderful. Sorry about how lengthy this is.

Thanks for reading!

Last edited by Little.cat.lady; 10-09-2011 at 11:36 AM.
10-08-2011, 09:25 PM   #2
lookame
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Something that will help you is keeping a food and symptom journal. Note when the stomache pains come on when the worsen (rate the pain)when you have stools ake a note in the journal ect. I suggestn buying a calandar/planner of some sort and every day make notes of what you ate and see how it affects you. It sounds like you may have some sort of food allergy but crohns can cause constipation depending on where it's located. The black tary stools also is alarming.

There is an undiagnosed forum on here which everyone is very nice, listens wishes you luck ect.

Good luck hopefully youll get answers soon
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Diagnosis: Confused officially diagnosed in 2010

Bloodwork is indeterminate IBD, biopsies are crohns positive, symptoms and visually it's UC

Current meds-
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awaiting surgical consult

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eosinophilic esophagitis 5/2015
10-08-2011, 09:46 PM   #3
Little.cat.lady
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Something that will help you is keeping a food and symptom journal. Note when the stomache pains come on when the worsen (rate the pain)when you have stools ake a note in the journal ect. I suggestn buying a calandar/planner of some sort and every day make notes of what you ate and see how it affects you. It sounds like you may have some sort of food allergy but crohns can cause constipation depending on where it's located. The black tary stools also is alarming.

There is an undiagnosed forum on here which everyone is very nice, listens wishes you luck ect.

Good luck hopefully youll get answers soon
Thank you for the support and advice. I have actually done a food journal twice and both times there has been no conclusive outcome of a trigger with my doctors. I've even tried adjusting and re-adjusting my diet on my own several times (gluten, dairy, sweets, nuts, etc...) with no change. Swaying from a regulated eating schedule may be playing a role in all of this but that's the most I've come up with.
10-08-2011, 09:47 PM   #4
DustyKat
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Ah hell, you poor thing, you must be beside yourself!

You aren't alone hun, there are many on here that have been told it's all in your head! and as a result have needlessly suffered for many years.

So many of the symptoms you have listed could well point to IBD or another autoimmune disease. Skin tags fit the list to.

What blood tests have you had done lately?
Have you been tested for B12, Folate, Iron Stores and Vit D?
Have you had inflammatory markers done (ESR & CRP)?

A colonoscopy and endoscopy still leaves just about all of your small bowel untouched and unseen. Have you had any imaging done - scans or ultrasounds?

Are you on any medication?

My daughter went undiagnosed for 18 months and all of her results returned as normal so don't be put off by that either, what you are feeling is real and you deserve to be listened to and have your fears and concerns validated.

Do you keep a diary? When you are living this day in and day out it is too easy to forget the finer details and when a health professional is presented with a journal it makes it harder for them to dismiss you. We have list of suggested inclusions you may like to look at...

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

I'm sorry for all the questions. I hope you are able to find solid answers and relief very, very soon!

Good luck and welcome aboard.
Dusty. xxx
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10-08-2011, 10:15 PM   #5
Little.cat.lady
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Ah hell, you poor thing, you must be beside yourself!

You aren't alone hun, there are many on here that have been told it's all in your head! and as a result have needlessly suffered for many years.

So many of the symptoms you have listed could well point to IBD or another autoimmune disease. Skin tags fit the list to.

What blood tests have you had done lately?
Have you been tested for B12, Folate, Iron Stores and Vit D?
Have you had inflammatory markers done (ESR & CRP)?

A colonoscopy and endoscopy still leaves just about all of your small bowel untouched and unseen. Have you had any imaging done - scans or ultrasounds?

Are you on any medication?

My daughter went undiagnosed for 18 months and all of her results returned as normal so don't be put off by that either, what you are feeling is real and you deserve to be listened to and have your fears and concerns validated.

Do you keep a diary? When you are living this day in and day out it is too easy to forget the finer details and when a health professional is presented with a journal it makes it harder for them to dismiss you. We have list of suggested inclusions you may like to look at...


I'm sorry for all the questions. I hope you are able to find solid answers and relief very, very soon!

Good luck and welcome aboard.
Dusty. xxx
Thanks For the support and kind words Dusty.

I have only had basic blood work done as far as I know. They also did a gastric emptying study which was normal and a full abdominal ultrasound which was also normal. I've asked my regular doctor for a ct scan and she doesn't think I need it. I'm planning to ask my GI for further testing when I see him next. Hopefully he will do more for me.

I am on a medication for reflux called Lansoprazole 30mg. It keeps the acid at bay but that's about it. I also take Concerta for ADD I've not noticed any change in my listed symptoms since I started taking it.

I also forgot to mention that I had a huge hormornal imbalance. My testosterone levels were very high when they were tested by a past obgyn back in '09. She said I had PCOS, so I take BCPs to regulate it. I've asked my current dr to retest those levels several times but they said they can't do much for it and it doesn't affect anything so there's no point.

I will definitely take a look at the diary post. I've done a few food journals but maybe I'm not including the correct things. Thanks so much!
10-08-2011, 10:42 PM   #6
DustyKat
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If it is at all possible to get one of your docs to do a request for bloods then I would push to have them done now, it is a good starting point before moving on for further testing...

Ask for:
CBC
CMP, I think that's what you guys call it. It covers liver & renal function and electrolytes.
B12
Folate
Iron Studies
Vit D
CRP
ESR
TFT's
Amylase
and whatever hormonal levels you need.

Good luck!

Dusty. xxx
10-09-2011, 02:42 AM   #7
Slim Johnson
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It's a CMP Dusty. I do a CBC/CMP/CRP whenever I go to a doctor. They can tell more what's going on at the moment.

I too went undiagnosed for years. Even had an endoscopy in '04 that was clear. Biopsy's do not absolutely rule out CD. Neither does endoscopy. A Ct baruim scan can give more insight into what your small bowel is doing. You should press your doctor to give you this imaging test, if they don't suggest it themselves, in conjunction with the endoscopy.
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10-09-2011, 07:52 AM   #8
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to the forum LCL! You do have some of the classic signs and it also took me a year of testing. Whilst losing 40 lbs in 2 months, blood work was useless for me, ct scans, colonoscopies, did them monthly. Had exploratory surgery, took out my appendix... a week later, back to so much pain. Finally I got mad and went to see a teaching doctor who suspected Crohns and had a Endoscopy to the bowels with a barium follow thru, they and I saw clear as a bell my bowels were looping and infected.

It is NOT in your head so dismiss that. I have done the Gluten free thing for a year, did nothing. But you also could be celiac, not uncommon. Vomiting means something is obstructing somewhere. Dont give up and keep us posted.
10-09-2011, 12:21 PM   #9
dannysmom
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Hi. Sorry you are going through all of this. We can understand here. Along with what the above posts recommend, I think it would be good for you to see an endocrinologist too to have a full hormone evaluations (thryoid, adrenals, etc.). I thought of this when reading your intro since you feel so fatigued - and especially after reading your testosterone imbalance. Good luck!!
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(Danny's story)
10-09-2011, 01:26 PM   #10
Little.cat.lady
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Hi. Sorry you are going through all of this. We can understand here. Along with what the above posts recommend, I think it would be good for you to see an endocrinologist too to have a full hormone evaluations (thryoid, adrenals, etc.). I thought of this when reading your intro since you feel so fatigued - and especially after reading your testosterone imbalance. Good luck!!
I will do that, thank you!
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