CNS bowel disease?

[Donna Thomson]

Hi, my son has severe quadriplegic CP and right now he's in the hospital with an acute possible diagnosis of Crohn's disease. He has severe diarrhea that is malena (burgundy mucous blood). He had a biopsy that showed inflammation of course and a provisional diagnosis of crohns since it looked like a process that had been going on for 6-8 weeks. He also has blood pressure drops and extreme sweats during periods of the night which is new. Two years ago his soft tissue collapsed around his throat and severe apnea (central and obstructive) developed and the docs said it was the progression of his CP.

My question: Can Crohns or crohns like bowel disease be neurologically based and a symptom of progression of deterioration of central nervous system?

Thanks, Donna

[Cry Tears]

Hi Donna. I am so sorry your son is suffering so....I've been there, done that!
Also sorry this is also hard for you to bare with having a such a sick child, you must feel devastated seeing him in so much "trouble"....but this too shall pass. It may take him a few days more to turn around.
The steriods take a few days to get "things" settled down.
I'm not all that educated when it comes to the human body. I did work as a medical Phlebotomist (a very fancy name for just someone who gets blood out of people! LOL!)
My mother was an RN...my 2 sisters are doctors, I fooled them all and studied Geology in college...so I've got rocks in my head!

So all I can tell you is what I think I know...may not be 100% correct, so take my info with a grain of salt...his gastro doc should be able to tell you more about whats going wrong with him.
First let me ask you...is the Crohns in his small intestine or large intestine (colon)?
These are almost 2 distinctive diseases although they really are not.
You can have Crohns disease from your lips clear down to your anus.
No where is there a text-book case as every body is different.

Think of Crohns as being severe excema and sunburn, only on the inside of your mucas membrains (digestive tract).
So far I've had 2 sections removed...a total of over 3+ feet.
I still have lots of bowel issues that continue to bother me always in the small intestine.

I have some sort of auto immune process going wrong with my body.
I also have Peripheral Neuropathy (inflamed and dying nerves).
That to can be all over your body including your intestines.
But that is very rare.
But this also can cause the sweating...also taking steriods can cause a lot of sweating.

Have them put a small fan on him. This will help a lot as well as be comforting to him.....
They have found that fans are soothing to patients, especially when feeling sweaty.
DO NOT let it blow directly on him...have it blowing just so the room has air circulating around him.
There's also Autonomic Neuropathy which causes severe bowel disfunction.
Joy here on BT has this which affects her intestines.
I'll alert her to contact you...she's had this for years.
But these two are very seprate diseases but can cause similar issues.
A good gastro doc should be able to explain this further.

If your son is younger I would highly recommend he be seen and treated by a pediatric gastro doc and just just an adult doc....huge difference!
His doctors owe you a little time to explain all this to you...if not I'd be concerned.
I have found most gastro docs to be very compassionate.
I think because they know the suffering most Crohns patients go thru.
The sweating issue could be from the Steriods...I'm sure he's on a much higher dose than just maintanence levels... most likely he's on 100mg+ administered by IV.
The sweating also can be triggerd by any gastric activity.
When I eat, it can set off a severe sweating reaction. I can be out in a snow storm, sweating dripping hot and steamy. Forget about wearing glasses!

He probably has an NG Tube (nasal gastric tube) to keep his tummy "quiet".
His stools can have just a little blood in it, but looks like a lot more than is possible.
Thats because the fecal matter and mucas mix with the blood making it look like a lot when its not that much. He will still have some small amount of BMs (stools) even when he's not eating anything...your body continues to make gastic "juices" that continue to go thru you. These can be mucasy and dark yellow from the bile.
They may give him a few units of blood to give him a boost.
I've had over 25 blood transfusions, but only because I had an intestinal anuerism on top of all this mess! I was nearly bleeding to death,lost over 2/3 of my blood volume.
My heart goes out to you. Please keep in touch and let us know how your son is doing.
I hope I've answered just a few of your questions correctly.
Everything I've told you is what my gastro docs have told me.
Right now I'm trying the Gluten free diet others have helped me see may be the reason for my Crohns disease. So far Im feeling just a tad better.
Make sure your son is taking the proper B12....you must read about this on the Vitamin deficiancy forum...please read what Rose has written about this...it saved my life. I was severly deficent despite my blood levels saying they were normal! But I had bad doctors till I finally found good ones now.
I pray the Lord will heal your son very soon and he will no longer suffer from this horrible disease.
Blessings to you and your family. Cheryl

[Donna Thomson]

Hi Cheryl! Thank you so much for answering my post. I just saw your detailed reply tonight! Nicholas is seen by the gastro team at University College Hospital in London and he's been on the teen ward even though he's 18. So I think the gastro team does both peds and adults because it's a general hospital, not a pediatric one. They seem very good, but the problem is that they have never had a child with such OTHER medical difficulties before. Nick has a gtube and fed via that. His crohns is apparently in the large bowel however we did see some blood coming back out of the tube which meant that there was some bleeding in his stomach. We went back for follow up last Wed. and they told me that they were satisfied with his progress but not thrilled. They said that some people respond really well to the steroid and some do not at all. Nicholas is somewhere in between. So in a month, when we go back, if he's not better they will start the immunosuppressant. He is still having liquid diarrhea, but it's not bloody anymoer, thank goodness. Nick has really very severe cerebral palsy. He is very bright, but doesn't walk or talk, has chronic pain, severe scoliosis, dislocated hips, a spinal cord pain pump, well the list goes on. Anyway, I will make sure to keep up the updates and I really appreciate your support.
Donna

[Angiel]

Does anyone know where else I can possibly find more information on Crohn's???







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