does Crohns always progress?

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jodyisme
Regular Member


Date Joined Dec 2006
Total Posts : 70
   Posted 9/3/2007 8:04 PM (GMT -6)   
i come here and read but seldom post. my husband has Crohns and he is a alcoholic who drinks daily and takes his meds sporadically.
 
i have been reading here about progression of the disease and wondered, does it always progress?
 
he doesnt even have a GI now, his last one wont see him anymore as long as he wont comply. he is on (when he takes them) nexium, pentasa, entocort, lexapro and mestinon for ocular MG. they seem to reasonably work most of the time except he has D all the time and occasionally blood. he has had a colonoscopy, endoscopy (Crohns in his stomach also) and the blood work about 4 yrs ago or so. he has no followups or checkups since about a yr ago. our GP rxs his scripts. im sure eventually they will stop working as the asacol and pred, cipro did, since he wont take any of it on a regular basis. he was dxed because he began to basically bleed and hit the toilet every 5 mins and actually went to the dr for it! he also chokes occasionally due to a esophageal narrowing.
 
was just wondering what the future might hold in store,,,if he progresses or if it indeed will* progress.
 
tyia* for any replies. jody

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 9/3/2007 8:51 PM (GMT -6)   
It sounds as though your husband is in denial. If he is having symptoms it basically means the crohn's is not under control. He may be able to continue functioning like this for a long time, but eventually, if the disease is allowed to run its course his symptoms will probably worsen. Most likely he will face obstructive symptoms at some point.

Was he a heavy dringker before his diagnosis? What a terrible position to be in. I'm so sorry that you have to bear the worry for his immaturity and irresponsibility.
Belleenstein:

30+ years living with Crohn's.


Keah
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Date Joined Nov 2003
Total Posts : 7314
   Posted 9/3/2007 8:56 PM (GMT -6)   
Hey Jody, I'm sorry that your husband is so non-compliant. That must make for a very stressful situation for you. There is no definite answer for you here. Technically, it could be said that Crohn's does not progress for everyone. However, in most cases, the lack of progression could be tied to treatement to keep the inflammation under control. There are also many of us who suffered with symptoms for many, many years before finally being Dx and starting treatment with only mild intestinal damage. Likewise, there are many who never had any problems and ended up in emergency surgery to have a resection.

Crohn's really does seem to have a mind of it's own and it affects all of us very differently. Some suffer horribly with fistula after fistula and others never have one. I wouldn't be surprised if the researchers eventually find that what we now call Crohn's is really several different diseases which each act differently.

I hope that all continues to go well for your husband, but I'm worried that his refusal to treat the disease, his history of pretty active inflammation and his drinking may be setting him up for future problems. Sometimes we need to hit rock bottom before we can face the need to treat the disease. I just hope that doesn't happen to him.
Keah a.k.a. Wormy
 God helps those who help themselves.
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broomhilda
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Date Joined May 2007
Total Posts : 1488
   Posted 9/3/2007 11:06 PM (GMT -6)   
I don't think he will ever come out of denial until he addresses the fact that he's an alcoholic. Any luck getting him into AA? If he is in denial about the CD, he's covering up his mental anguish and physical pain with the alcohol. I see this as a time bomb waiting to happen. Hang in there and try to be as supportive as you can. This situation has got to be awful for you!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Remicade, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain.  Lactose Intolerant?
 
 
Attitude: When I stand before G-D at the end of my life, I want to be able to say; I used every talent you gave me in a positive way to help others along their way!


jodyisme
Regular Member


Date Joined Dec 2006
Total Posts : 70
   Posted 9/3/2007 11:29 PM (GMT -6)   
thanks so much for the replies. right now his symptoms seem to come and go. like, some days he is not bad and some he is in the bathroom constantly. the last few days he is taking mylanta on top of nexium for heartburn and says he is nauseous all the time. so i figure his stomach involvement is acting up. i have some pics from his colonoscopy and his endoscope...wow. nasty looking. tons of ulcers and small bleeding areas.. this was from a few yrs back.
 
what he chooses to do, he will pay for. i try to let it go after spending a lot of time worrying myself to death over it or telling him what he should do or not do. i finally just let it go with alanon's help.
 
its on him now. i just see so many here trying so hard to heal and live with this and then i see him, just the opposite. i admire yall so much for how hard you try and i can only imagine how much pain you have learned to live with.
 
yes, he has always been a drinker but since he retired it is much worse. daily till he staggers and falls thru the house. he now has scars all over his back...his last dr wouldnt consider remicade or more than he takes now unless he begins to comply with the dr instructions.
 
i do expect him to have to pay the piper some day from this. be nice to know when! but...we cant know that.
 
anyways...i guess we will see! i have noted Crohns is diff in each person. enough the same but still diff. he also has the joint stuff from it. and myasthenia gravis in his eyes...2 auto immune diseases...seems that happens to some people.
 
some ask here about drinking with meds. i think mostly alcohol negates the meds and all that money is spent for nothing. my husband has pretty much at the moment hit a plateau of inflammation yet not enough to force him to the dr (unless his stomach gets worse--it isnt any better for sure). i dont blame the drs for not wanting to mess with him like this. must be very frustrating for them.
 
i appreciate the kind replies and good wishes. :) jody, sending you all the best thoughts i can.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/4/2007 6:48 AM (GMT -6)   
Hi Jodi Welcome to HW your certainly having to deal with alot here and CD effects from mouth to anus so sounds like he does have alot of issues going on here .He does need to stop drinking I would think because there are meds that can help but we have to be able to help ourselves first. Dealing with others addiction to booze can be very depressing for those that have to cope with a loved one but drinking can be stopped .Has he tried to admit himself to a dryout clinic or ever tired to stop? How old a man is he? One thing I will say is that I hope you are taking care of yourself and hope he will somehow wake up and do something to help himself. lol gail

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 9/4/2007 7:48 AM (GMT -6)   

There is a subset of Crohn's patients -- around 20% is the estimate I have seen -- in whom the disease is essentially level, without progression. However, in your husband's case, the alcoholism overlays everything . . . it is just as likely that the ulcers, bleeding, etc. are from his alcoholism as from the Crohn's, especially the upper Gi problems.  

I know it sounds cold to say this, but the reality is that if he continues to drink as you have described it, he will likely die within a fairly short time from alcoholism or a related cause (falls, wrecks, suicide, fire, etc.) long before Crohn's kills him. You might consider Al Anon for yourself, as only he can deal (or not) with his alcoholism.


jodyisme
Regular Member


Date Joined Dec 2006
Total Posts : 70
   Posted 9/4/2007 2:21 PM (GMT -6)   
thanks for the replies...they do help support me thru this.
 
i am in alanon...
 
i guess i just wish i could see the future and i know i cant. one of those things....
 
it isnt cold to say that, mikeb, it is reality. i know it. still doesnt make it easier, ya know? i dont mind you being honest with me. i value it.
 
he is 57 and retired last year. since then he has gone downhill on the drinking. his meds seem to be holding him pretty even, altho not healed nor stopped. just "less" crohns, if that makes sense. i bet he would be a good candidate for complete remission if he only would. without meds, he was really in bad shape. so i guess taking em some of the time beats not at all.
 
he has not been in any rehab and altho our insurance will pay for it, he just wont consider it.
 
i dont blame his drs for not wanting to mess with him. i get impatient and dont show much compassion when he is sitting in the bathroom for hours at a time. i usually leave him face first in the tub as he falls into it while on the toilet.
 
i guess its a serenity prayer thing. i daresay it probably will get worse and its a tribute to the human body how well it has tried to work despite everything.
 
mikeb, that is why the drs wont treat him further. they cant tell if the meds work or not with the alcohol involved.
 
again, thanks and best wishes to you all. :) jody

tcbnk
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 9/4/2007 4:44 PM (GMT -6)   

Jody,

Wow!!!  I grew up with 3 alcoholics :(.......so glad to hear you have al-anon in your life tough.

In reading earlier posts did you say that he takes his meds on and off?  Messing with prednisone is not a good thing for him to mess with

Stay strong and do for "yourself"!  That is really important for your own health.  Prayfully, "Tough Love" wont have to get drastic in your life.

 

Hugs,

Colleen.......a fellow Al-anonner


CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 364
   Posted 9/4/2007 5:00 PM (GMT -6)   
I realize there are quite a few issues here, and I don't really have any words of wisdom. Just know that we are listening and are here--for you and your husband.

(Just a side note on sporadic meds: Sometimes after stopping a drug, it doesn't work a second or third time around. He may be ending some options without knowing it by non-compliance.)

jodyisme
Regular Member


Date Joined Dec 2006
Total Posts : 70
   Posted 9/4/2007 9:20 PM (GMT -6)   
to answer what yall asked. he is on endocort now...pred gave him the shingles. yes, he takes it off and on.
 
he was in the toilet about all day today...but he only had one 6 pack this morning so i guess thats good. much better than out of his mind stumbling drunk WITH diarrhea. im sure you can all imagine that sight! (i gotta laugh, only way i keep my sanity some days)
 
colleen, i also am a ACOA. if you would like to talk, i think my email is on my profile. just mail me..i been going to a online al anon site for the meetings lately. i got my grandkids too often for the local ones...if it isnt there, just tell me and i will send it to ya.
 
Crohnieyogi..i figure that also. i know HIV meds can do that and altho i dont know...i would think its a strong possibility Crohns meds will also.
 
his corner he is painting himself into. i cant understand it myself.
 
as i said, i read here about every day but since i dont have the disease (thank you, Lord) i dont usually post. i do empathise and sympathise with yall who fight this daily. i admire the guts here....(no pun intended!)
 
hugs! jody
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