Crohn's Disease Forum » Your Story » Looking for answers...


04-01-2012, 06:13 PM   #1
jmn777
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Join Date: Apr 2012
Looking for answers...

I have no clue if i have Crohns Disease or anything. For all I know it is all in my head and largely due to the stresses of life as that characteristic most definitely amplifies my symptoms. Does this sound like it could be CD and if so what should I be pushing my doctors to do in order to tell if it is?

As an example this is my most recent occurrence:

-March 18: Began feeling a bit under the weather and having "stomach issues".
-March 19: The bathroom runs persisted and I was constantly fatigued.
-March 20: Recovering but exhausted but beyond irritable.
-March 26: Fast forward nearly a week of being OK and Monday night it starts again but it seems to have brought a freaking army with it.
-March 27 through April 1: I have just began to recover and returning to "normalcy" but the first 3-4 days of this bout were simply horrendous.
--Severe left lower abdominal pains.
--Extreme gas.
--Yellow defecation which ranged from very soft stool to chunks in liquid to border line purely liquid. The later two being the dominate cases.
--By the second or third day extreme headaches, joint aches and seemingly a fever. Very "flu like".
--Sweating
--Exhausted to the point all I did was lay in bed and wonder wtf was wrong with me.
--Swollen tongue which I repeatedly bit during sleep.
--Mouth canker sores.
--Foggy perspective on the rest of reality.

A few items to note prior to either incident is one day I woke up and all of my joints ached beyond all recognition. In talking to someone about it I described it as "I've never been poisoned but if I had this is how I would imagine it feeling." This quickly went away and I had no symptoms associated with it.

What is probably more important and largely the reason for my posting here is the above scenario has become a frequent occurrence in my life and it seems to be progressively getting worse. I am 40 now and about 8 years ago I began having "odd" digestive problems. It had always been associated with stress and my latest dealings with doctors that has been the noted cause again.

In my youth I consistently had severe mouth sores. I even recall from the age of five having these they were that bad. Later in life I wondered if i had an immune issue as I also suffered abnormally from flus and colds as a child.

At this time I have had blood tests(including a full gluten allergy test), colonoscopy, urine tests, CT scan and numerous ultra-sounds. All of these have come up "clean" other than something about about an abnormal appendiceal orifice which no one seems to be concerned with and nothing showed up negative on the CT scan regarding. I have not been able to track to this certain types of food nor activities in my life as well. It seems utterly random other than the stress factor.

At one point they claimed I had a 6mm gall stone and several 1-2 mm kidney stones. Oddly enough none of my symptoms apparently mimic a gall stone issue and my kidney stones seemingly magically vanished after the second of three ultra sounds I had. Because of this later issue, lack of associated attributes and issues I've heard from friend and family regarding gall bladder removal I have been "skittish" to have this operation which was recommended.

For over three years now of nearly as severe events as that described above I have been trying to figure out what is wrong with me. I have reached the point I dread going to work because availability of a bathroom is priority. I always spend time in the bathroom before leaving work or going to work in hopes I wont have an 'accident' en route. My life is becoming increasing dictated by this problem and as things stand I have zero answers. Even if there is no cure but knew what was wrong it would be some thing. The worst I feel is yet to come as I have reached the point of the mental aspects of this. The embarrassment, physical debilitation, destruction of any social life, depletion of vacation time, financial impact, etc, are really coming to bear and at times the only way I see is to just get out.

I am tired, burned out and sick of being sick.

I know it could be worse and others have it worse but that does not help their situation nor mine. If I had my preference no one would be dealing with things like this as there just is no point to it. While things can be worse my stance on life is they can always be better, for everyone.

Last edited by jmn777; 04-01-2012 at 06:30 PM.
04-01-2012, 07:27 PM   #2
Irene3
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Hello and welcome to the forum. There are many undiagnosed people with bowel issues here, and a separate subforum for many seeking answers as you are.
I personally think, it sounds very much like crohns, and there are many who have had colonoscopies ect, that didn't show crohns to begin with, as their symptoms lessen, and flare. The many other side issues, besides your abdominal pain and bathroom visits, many times are an issue with IBD for many of us. Feeling extremely ill, headache and flu like symptoms...sound like so many on here. I personally have these issues also, and my GP puts it down to constant dehydration, due to constant D. I think its partly medication side effects as well as candida.
Have you had any bacterial testing of your stools? There's many who believe (my self included), that bacterial overgrowths, from diet antibiotic use ect, play a major role in developing if not causing IBD. It dosnt take more then a single dose of antibiotics, to throw your gut flora out of balance, and over the years, many are unable to process wheat ect as a result, and end up with crohns, colitis ect, later finding out they have a bacterial issue, which is then believed to be caused by the IBD, rather then viceversa.
It's just an opinion, but something you could look into. Also keeping a symptoms diary, to take note of BM, food and symptoms, so you could glance over the days when your flaring badly. Are you having less refined sugar some days for eg, because with bacterial overgrowth, you can have horrible symptoms, as the bad flora craves it's sugar.
A GI, with a gastroscopy might help, and blood test on the days your worst, to see if there's a higher level of inflammation markers on those days, which point to crohns.
Anyway, best of luck with it all, it can be extremely hard to be ill even having a diagnosis, let alone if you don't know what's wrong. And the embarrassment of D, and antisocial behavior which comes with being unwell, and financial implications due to every supplement or med we can think of to improve health, can really wear you down. You'll find many on this forum, who go through the same issues in these areas, even with the wide and varied symptoms that accompany IBD.
Depression is common in these illnesses also, because our stomach is responsible for seratonin production(I only recently found out), and as your having D and symptoms vary, so do these levels unfortunately, so maybe of your having depressing thoughts constantly, speak to your GP about an antidepressant also.
Best wishes, and keep us posted on how you are.
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Currently on long term prednisone,6mp,humira, nizoral, and vit supplements,b12 shots.

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04-01-2012, 09:37 PM   #3
David
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Location: Naples, Florida
Greetings and welcome to the community. I'm so sorry you've been having to go through this. My thoughts:

1. Ask what their thoughts are regarding a capsule endoscopy to check your small intestines.
2. Get a full vitamin panel including vitamin B12, vitamin D, and as many of the B vitamins as you can. It sounds like you may be deficient in some of those.

Did they take biopsies when they did the colonoscopy?

Do this ASAP. We're here for you buddy. Please keep us updated and feel free to ask any questions you have.
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04-02-2012, 01:07 PM   #4
Angrybird
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Hello and welcome to the forum. I agree that further testing needs to be done as a colonoscopy can only reach so far and you may have a problem 'higher up' so do get onto your doc about this and keep us updated on how you get on.

AB
xx
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
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