Good God, What's Wrong With Me??

[jamilea]

CT scan showed inflammation in my colon. Colonoscopy showed not clear enough so could've missed small or flat lesions, unknown hemorrhaging in rectum, and skin tags appeared around outer anal area.

I have been on a really small strict diet so I don't end up in the ER again. The pain I've experienced is CATASTROPHIC where I'm screaming and crying because the lower left quadrant feels like it's going to explode.

Last year, I went weeks with diarrhea to constipation, back and forth. That's when the skin tags first appeared.

Diarrhea with mucous in it usually relieves the problem but only strong narcotics gets me through it since landing in the ER. If I eat any little thing outside of my strict diet, basically no milk, breads, no meats, not nothing pretty much, I am suffering IMMENSELY....nausea occurs a lot, heart burn, vomiting in my mouth, vomiting in the toilet, blood in my stool. All kinds of crazy stuff.

What I want to know is, does anyone else suffer from something similar?

Are GI problems caused by MS?

How come the colonoscopy couldn't detect what is wrong with me? And why were the biopsies normal?

Can anyone give me information on this stuff? The GI doctor urged me to get health insurance as soon as possible (just got laid off) so I can come see her to address this and do a re testing of everything including stool samples because we didn't get to do that.

I should probably mention that the colonoscopy was able to find:

"Erythema in the rectum compatible with proctitis (biopsy)". My colonoscopy photos were really dirty. I couldn't drink all of that prep solution without becoming violently ill. I tried everything to make it work.

I found out today that my father has skin tags in the same area and has bowel problems eating certain things, especially coffee. He refuses to have it checked.

Also, I was told by my father that I have a 1st cousin on his side who has Ulcerative Colitis.

Thank you if you can help. I'm tired of eating nothing. I've lost 13 pounds in a few weeks. I don't want to be really skinny again.

I'm looking forward to meet you, reading your stories, offering support, etc.

Jami Lea :yoshijumpjoy:

 

[Dexky]

Hi Jami, welcome!! All of those symptoms are so common on here that it amazes me that the GI didn't at least start you on prednisone or something. Aaagghh, I just don't get it!!! Have you been diagnosed with MS? Why did you ask that?

 

[jamilea]

Thank you Dexky for your response.

Yes, I'm diagnosed with possible/probable, 2 different doctors.

The GI doctor couldn't do anything past the colonoscopy. I was laid off of work and lost my health insurance. She said she couldn't tell what anything is because of lack of stool samples, blood work and a clear colonoscopy.


Ugh! There are so many things I can't eat because of food allergies, mainly the Nightshade family and red berries.

Now, I can't count how many things I can not eat. I'm afraid of the rapid weight loss!! I have been diagnosed with dysphagia amongst other things. I'm starting to think that maybe it's some sort of IBD more than MS..

 

[gypsigirl28]

hi jami, welcome to the forum. I am sorry to hear that you are having a hard time finding out what is wrong with you. I am sure someone will come by an answers your questions or give you some advice. I hope you stick around

 

[Dexky]

Hang in there Jami! There'll be others with experience to help answer your questions. You've got family history and the whole nine yards. What does it take to get some help?
In the mean time, you could look up posts by Cat-a-Tonic. She is also un-diagnosed and until recently when they finally allowed her to try prednisone, she had been through much the same symptoms. Good luck!! I wish I was more help!!

 

[jamilea]

Thank you so much for your replies. There is so much more to my symptoms but it goes into other areas of my body like CNS and the like. I wish a doctor could just look and say Aha! Wouldn't that be nice for us all?

 

[DustyKat]

Hi jamilea and :welcome:

I'm glad you found your way here. Since you are dealing with two different autoimmune diseases what are the symptoms that gave you the MS diagnosis? I am just curious as IBD has so many EIM's (Extra Intestinal Manifestations) associated with it.

It is not uncommon to have normal test results so please don't be disillusioned with this, you are not alone with this and although I do not IBD I understand the frustration that comes with not knowing as I went through this with my daughter. If you don't already have a diary please start one and list the following -

- Bowels, how often do you go, what does it look like, is there blood or mucous.

- Pain, severity on a scale from 1 - 10 (1 being the lowest), where is it located, how long does it last, describe what it is like (ache, stabbing, sharp etc), is it constant or intermittent, does it stop you from doing anything (standing up, walking etc), Have you taken or done anything that reduces or stops the pain and anything that doesn't stop or relieve the pain.

- Take your temperature at random times once a day and record.

- Are you losing weight.

- Appetite, what is it like, are there foods that make your symptoms worse.

- Other symptoms, what other symptoms do you have and how often do they occur. Things like nausea, vomiting, headache, joint pain, eye issues, mouth issues like ulcers, bloating, anything that you can think of that isn't normal.

- Write down any questions that you can think of as you go along.

Take this with you when you next go to the doctor, it is so easy to forget the details when you are dealing with this day in and day out. Hang in there and keep fighting until you get the answers you need, yell, kick and scream if you have to!

I hope you stick around and please keep us posted on how you are going. Welcome aboard!

Take care,
Dusty

 

[Pirate]

Dusty hit it right on the head. Document everything. Crohns can go undiagnosed for quite sometime or they can find it right of the bat. The more information you supply the doctor and the more questions you ask can help the GI see things clearer.

Good luck

 

[Astra]

Hi Jamilea
and welcome

Dusty has given you great advice! I have nothing more to add except to say you really need to get on some appropriate meds such as Prednisolone.
wishing you lots of luck and love
Joan xxx

 

[Cat-a-Tonic]

...you could look up posts by Cat-a-Tonic. She is also un-diagnosed and until recently when they finally allowed her to try prednisone, she had been through much the same symptoms...

I heard my name! Hi Jami, welcome. As Mark said, I'm also undiagnosed and have been through many of the same tests you've been through. I've been going through this for nearly a year, trying to get diagnosed. I am hopefully getting close, as I'll be having pill cam done soon and then I'll either be going on Endocort or back on pred. Has your doctor tried any IBD meds on you yet?

As far as why your colonoscopy & biopsies didn't yield any results, I had the same experience. If you do end up having crohn's, it can be kind of patchy in the intestines, and the biopsies need to be taken from the specific spots where the disease is, otherwise they will come back clear. It can be difficult to get biopsies in the right spots. My GI took a lot of biopsies, but still they were all normal and no evidence of disease. It's also possible that the disease is higher up in the small intestine, where scopes can't get to from either end. That's why I'm having the pill cam done, to see the entire length of the small intestine. Have you talked with your GI about what your next test will be?

I know it can be frustrating - you just have to keep trying. I know eventually I'll get diagnosed and I'm sure you will too. Feel free to message me with any questions or vents.

 

[rctriplefresh5]

CT scan showed inflammation in my colon. Colonoscopy showed not clear enough so could've missed small or flat lesions, unknown hemorrhaging in rectum, and skin tags appeared around outer anal area.

I have been on a really small strict diet so I don't end up in the ER again. The pain I've experienced is CATASTROPHIC where I'm screaming and crying because the lower left quadrant feels like it's going to explode.

Last year, I went weeks with diarrhea to constipation, back and forth. That's when the skin tags first appeared.

Diarrhea with mucous in it usually relieves the problem but only strong narcotics gets me through it since landing in the ER. If I eat any little thing outside of my strict diet, basically no milk, breads, no meats, not nothing pretty much, I am suffering IMMENSELY....nausea occurs a lot, heart burn, vomiting in my mouth, vomiting in the toilet, blood in my stool. All kinds of crazy stuff.

What I want to know is, does anyone else suffer from something similar?

Are GI problems caused by MS?

How come the colonoscopy couldn't detect what is wrong with me? And why were the biopsies normal?

Can anyone give me information on this stuff? The GI doctor urged me to get health insurance as soon as possible (just got laid off) so I can come see her to address this and do a re testing of everything including stool samples because we didn't get to do that.

I should probably mention that the colonoscopy was able to find:

"Erythema in the rectum compatible with proctitis (biopsy)". My colonoscopy photos were really dirty. I couldn't drink all of that prep solution without becoming violently ill. I tried everything to make it work.

I found out today that my father has skin tags in the same area and has bowel problems eating certain things, especially coffee. He refuses to have it checked.

Also, I was told by my father that I have a 1st cousin on his side who has Ulcerative Colitis.

Thank you if you can help. I'm tired of eating nothing. I've lost 13 pounds in a few weeks. I don't want to be really skinny again.

I'm looking forward to meet you, reading your stories, offering support, etc.

Jami Lea :yoshijumpjoy:

ahhh....i can relate the past 5 days ive prob eaten 1500 cals and a good majority is from ensure shakes.

im o nthe road to twig status.

 

[jamilea]

I guess I forgot to mention that I got laid off of work. I'm 26 yo. I lost my health insurance and can't afford Cobra.

The MS Society has referred me to John's Hopkins MS Center. They said they will work it out with me and find organizations that will pay for me 100% to get a diagnosis and receive treatment.

I'm really starting to believe that I don't have MS. Yes, I have 4 lesions in my brain but they aren't big.

I researched a lot last night. I found that IBDs can cause peripheral neuropathies and other neurological manifestations?

That could explain everything.

 

[Silvermoon]

Hi Jami, and welcome. Sorry you joined us under such horrible conditions, but I guess that is the way maost of us find our way here...lol.

Hopefully someone can get you on the right track. Documentation is great: buy yourself a notebook and write down EVERYTHING - even if you think it isn't related, it might be. There are a lot of people (yes, us included) who don't mention a lot of things to their doctors because they are scared of being labelled "whiners" or "hypochondriacs"... and if a doctor ever treats you this way, find a nother doctor. The health profession can only make a diagnosis when they get THE WHOLE PICTURE... so tell them EVERYTHING, even if you think it might be insignificant.

One thing to keep in mind (not necessarily good news) is because both MS and IBD are autoimmune diseases, it is possible to be diagnosed with both... . The good news (if there can be such a thing)?: for the most part, they can be treated with the same medications (ie immunosuppressants)... not cured, mind you, but treated.

Sending warm thoughts and prayers for answers soon.

 

[jamilea]

Thank you all so much for your words of encouragement, information and support. I really do hope I am not diagnosed with both but am prepared to deal with whatever comes at me.