Cytomegalovirus (CMV) and Crohn's disease

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Irish Red
Regular Member

Date Joined Nov 2007
Total Posts : 54

Posted 11/14/2007 3:06 PM (GMT -7)

Hello everyone.

My father was just diagnosed with Crohn's disease 2 years ago. He says he caught it from me... . Even when he is sick he has a sense of humour.

Dad has been in the hospital for 2 weeks now and we finally are starting to understand why the prednisone and other cocktails of medications are not working. The infectious control people have now told us he has CMV (Cytomegalovirus) on top of his crohn's . So first they have to fight the CMV and then they can fight the Crohn's disease - which is in the severe class.

Our worry is that we were also told it may take up to Three months for him to start feeling better. Right now he is taking an IV medication and there is medication he take orally for the CMV but they will not be attempting this for another week or so. Of course with all medications comes the scary side effects such as very low white blood count, kidney damage, blindness ect....

Has anyone else experienced this CMV virus with their Crohn's disease?

I am doing as much research as I can on the web and what I am finding is pretty scary.

Would love to hear from anyone who may understand or who has gone through a similar situation.

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.

"Life is like a box of chocolates you never know what your going to get inside"

Everyone knows that quote... how true how true.

Sway_79
Regular Member

Date Joined Nov 2007
Total Posts : 47

Posted 11/14/2007 4:26 PM (GMT -7)

Irish Red,

I have not had experience with CMV and CD, but I have read case studies on it. Was your father previously on immunosupressors before being diagnosed with CMV?

Is he on the Ganciclovir or Foscarnet therapy?

~Sway

Irish Red
Regular Member

Date Joined Nov 2007
Total Posts : 54

Posted 11/14/2007 5:55 PM (GMT -7)

Yes he was on Imuran which is a immunosupressor. The drug he is now on is Ganciclovir. When he is more stable they will be putting him on a pill form of this drug called Valganciclovir. What did you learn from the case studies you have read?

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.

"Life is like a box of chocolates you never know what your going to get inside"

Everyone knows that quote... how true how true.

Sway_79
Regular Member

Date Joined Nov 2007
Total Posts : 47

Posted 11/14/2007 6:15 PM (GMT -7)

It's a very interesting condition. It's for life...once you have it, you have it. It typically goes into inactive cycles, with occasionally reactivation periods after medicating. Some people treated with Ganciclovir can develop a Ganciclovir Resistant form of CMV. That's when the Foscarnet therapy comes into play. Unfortunately, with the immunosupressed, CMV can have harsher effects.

The CMV can cause gastritis / Colitis symptoms. If this is his case, CMV of the gastrointestinal tract is typically short lived due to the constant sloughing off of the cells by gastro mucus.

With the immuno-suppressed, the data is harder to read since they have varying degrees of "compromise". Most did well though on Ganciclovir therapy, and went into remission.

Here's a good website that isn't too "technical" if you wish to read. http://www.healthline.com/adamcontent/cmv-immunocompromised-host

Pretty much, they'll need to boost your Dad's immune system back up while on the therapy to help the drug, and his own body, fight it back off. They will probably be cautious to put him back on an immuno-suppressor for a while.

(((Red))) Keep the faith. Knowledge is power. Trust that he is in the best care, keep his spirits up, and he will recover quickly.

~Sway

gachrons
Veteran Member

Date Joined Mar 2007
Total Posts : 4512

Posted 11/14/2007 6:58 PM (GMT -7)

Hi Just wanted to say hope he is feeling a little better by now and how are you doing? Sounds like it is going to take some time yet for him to get better . Best Wishes .lol gail

Irish Red
Regular Member

Date Joined Nov 2007
Total Posts : 54

Posted 11/14/2007 9:13 PM (GMT -7)

Sway
Thank you very much. I try to keep the faith and trust that he is in the best care, but I must admit I do worry when things get a little complicated. I really appreciate your summary on your findings. I will take a look at the link you gave me, thank you. From the sounds of it this could get a little complicated. My Dad is very special to me and my family. Seeing him go through this is not easy.

Gail
Thank you for your kind words. I will say this. My Crohn's is mild in comparison and after seeing what he is going through and reading other people’s stories it really makes me put things into perspective. I am experiencing a flair up at the moment and although at times it is difficult to adhere to what the Dr. recommend (enema's, metallic taste from medications-Flagil) I know that I do not want to end up where he is or where others have been. This disease can scare the crap out of all of us from time to time(no pun intended). Right now I am very grateful I have this forum to turn to.

I will stay positive for my Dad thank you to you both for you comments.

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.

"Life is like a box of chocolates you never know what your going to get inside"

Everyone knows that quote... how true how true.

CrohnieToo
Forum Moderator

Date Joined May 2003
Total Posts : 8025

Posted 11/15/2007 4:50 AM (GMT -7)

Well, now, I haven't paid much attention to CMV in quite a few years now. 13 years as a matter of fact. I went in to donate blood for my premature granddaughter and they couldn't accept my blood for her because I had ... is it antibodies?? .. to/for CMV meaning, as it was explained to me, that at some time in my life I had been exposed to CMV. I was also told that the majority of Americans (or was it all people) by my age (52 at the time) had been exposed to and had the .. antibodies?? .. to CMV. They said my blood could be used for most people but NOT for preemies, transplant patients, etc.

If it is any reassurance at all as far as the antiviral medications used to fight the CMV, I was on Imuran for close to or somewhat over a year when we added a 6 week course w/2 week taper of Entocort EC. THAT was a mistake as I then developed a SEVERELY painful bout of shingles. I was started on IV ... valcyclovir (if I remember correctly) for 5 days in hospitali and then oral ... a different antiviral at home for some time. After finishing the first course of oral antiviral I broke w/several "cold sores" on and around my lips and was put back on another course of oral antiviral. That cleared everything up and I have been fine ever since. They never had me stop the Imuran thru it all and surprisingly, for me, I didn't have an side effects from the antivirals.

Good luck and God bless to you and your dad.

Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

CrohnieToo
Forum Moderator

Date Joined May 2003
Total Posts : 8025

Posted 11/15/2007 5:10 AM (GMT -7)

Interesting, Sway. Thanks for posting the URL. It reminded me: a year after my granddaughter was born prematurely and I first heard of CMV I suffered a whiplash. After the whiplash I encountered sleep problems that persist to this day. 3 years after my granddaughter's birth I was going to work, coming home, laying down and a good many nights not even waking up to eat supper, and sleeping until time to go to work the next morning.

[quote]CMV serology: a test to detect antibodies in the blood targeted against CMV. These antibodies can be of two types: IgG (old infection) or IgM (new infection). Typically, patients have both of these types of antibodies.

The above reminded me of that incident because my serology, both IgM and IgG, was positive for both CMV and EBV. The doctor wanted to put me on HOME IV valcyclovir or ganciclovir for 30 days and the oral one or the other (I've forgotten) for another 60 or 90 days. At least at that time the home IV antiviral was scarey as heck. One had to use rubber gloves, I forget the risk of its touching the skin, .... anyway I passed and refused the treatment.

FOUR years after the whiplash my Crohn's symptoms began again after a 20 year remission of disease activity after a resection in 1978.

Ahh, ignorance can be bliss. Sometimes. In my case, obviously God does look after fools!!!!

Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

CrohnieToo
Forum Moderator

Date Joined May 2003
Total Posts : 8025

Posted 11/15/2007 5:21 AM (GMT -7)

NINE years after the whiplash I was put on Imuran and 10 years after the whiplash is when I had the bout w/shingles.

No, I'm not saying that the whiplash caused the Crohn's return nor the shingles. Its just that that whiplash was a major milestone in my life. Just as the advent of my Crohn's in 1975 had been a milestone in my life. I had been healthy as a horse up to the onset of Crohn's symptoms in '75 and then healthy as a horse again from the resection in 1978 until the whiplash in 1994.

You kinda measure events in your life from the various milestones you've encountered. So I kinda measure by BC, AC and BW!!!

Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

HabsHockeyFan
Veteran Member

Date Joined Jan 2006
Total Posts : 1666

Posted 11/15/2007 5:40 AM (GMT -7)

Hmmmm....CMV is one of the things that has been blamed for my odd skin reactions. When I swelled up and had burning skin 2 years ago, that was given as the cause. I believe I am one of those people that has it dormant and certain situations and biological impacts bring it to the surface (literally my surface---skin). Another reason I have been hesitant to start immunosuppressors (I can't change their name to immunomodulators!)

CToo....maybe it is an aging thing. I have started using landmarks for time tracking too

when I was young, I didn't, but the brain needs points of reference now! I measure by before/after CD, before/after wedding, before/after fistulas

Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]

I'm riding on the escalator of life....

Irish Red
Regular Member

Date Joined Nov 2007
Total Posts : 54

Posted 11/15/2007 6:09 AM (GMT -7)

This is great feedback, thank you everyone!!

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.

"Life is like a box of chocolates you never know what your going to get inside"

Everyone knows that quote... how true how true.

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