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Posted 12/31/2010 8:33 PM (GMT 0)
 

Hi everyone.  I've been looking for a long time for a support group online where I could hopefully feel a little comfortable in.  I have had crohn's disease for the last 43 years.  I started getting sick way back when I was just 15 years old, and no one knew what crohn's disease was, let alone know what to do with it.  I spent most of the first 7 years with it in 3 different hospitals.  I had between 25-30 surgeries during that 7 years.  Right away, I lost a very large amount of my intestines and rectum, and received my ileostomy. 

Over the years, crohn's has affected every organ in my body.  I've been diagnosed with an additional 21 diseases and/or conditions.  Just in the last 2 years, I've been diagnosed with diabetes, pulmonary fibrosis which has caused me to be on oxygen 24 hours per day, congestive heart failure, and a brain disease called small vessel disease of the brain.  I guess if the diseases were all I had I'd be somewhat lucky, but I've had close to 60 surgeries causing chronic pain syndrome.  The treatment of this came very close to killing me a few years ago.  Due to all the years of being sick, hospitalizations, and surgeries, I had to go thru pain meds like they were all that I had in my life.  Finally, my doctors put me on demerol and morphine which I had to inject all the time at home.  I had been on these two drugs throughout my entire lifetime, so my tolerance became very high.  I became very addicted, almost lost my family, cheated on my dosages every chance I got until I hit rock bottom.  Nothing else worked.  cry   I did not realize then, but satan had a very firm hold of me and was pulling me closer and closer too him.  Approx 1-2 years from then, I was able to receive a surgically implanted intrathecal pump placed inside of me.  It has morphine in it, but totally out of my control.  I truly believe that this pain pump saved my life. 

My wife and I were talking yesterday about our past and how my pain drug problems affected us.  Why on earth we talked about that I never would have guessed.  Now I know.  Back to the time until I finally was able to receive the pain pump, I now realized that satan had both of his giant claws wrapped around me squeezing every ounce of life out of me.  I don't know why, but yesterday, God hit me over the head and made me realize and understand that He took me out of the grasp of satan and has protected me with His loving arms wrapped around me ever since.  You talk about something taking your breath away, this is what happened to me yesterday.  I have alot of questions, a few answers I'll be glad to share, and probably a few issues I wouldn't mind discussing with all of you.  I hope and pray that you will all welcome me here.  I want to wish you all a very happy new year.  I don't know if this is allowed, but I'd like to say thank you and say good bye with my first name.  Gary

Posted 12/31/2010 9:07 PM (GMT 0)
Hi Gary!  Feel welcome.  We are a group of listeners and advice givers.  I'll give my opinion on almost anything. tongue  

That is a remarkable story, I know it makes me shudder. 

Posted 12/31/2010 9:21 PM (GMT 0)
Hi Gary,
Welcome to the forum. I am glad you have insight into your issue, and wow you have been really put thru the wringer. Enlightenment is a lovely thing, and so is personal responsiblity.

Blessed be,
Navy

Posted 1/1/2011 11:15 PM (GMT 0)
 

Hi, Thank you for the nice welcome.  We spent this afternoon at my wife's sister's and her husband's house watching football and having dinner.  Because of a few of the things I have wrong with me, my cognitive abilities and memory have tended to deteriate a bit.  When I am with certain people, it seems to me that when they know I have these problems, they appear to me to take advantage and I cannot state hardly any information without being told that I'm wrong, and that I just don't remember what the real info is.  Unfortionately, I think my wife is one of those people who not only tend to do this, but also tends to really exagerate to make me sound even more wrong than I may be in the first place.  This feels so frustrating to me that I sometimes feel just shutting my mouth and not participate in any conversation at all.  I honestly don't feel I am that wrong all the time that these people make it sound like I am.  I'm not a ignorant person.  9 years ago I had to retire from being a professional counselor.  I had a Bachelor and Master's degrees.  Why would people want to do this to people who already have things wrong with us?  I would really appreciate to know if any of you think you experience this from people you know.  I would also really like to know what you think I can do to learn how to deal with this.  Thanks for all your help.  Gary  PS:  Is there a way to make these letters a larger font?

Posted 1/1/2011 11:29 PM (GMT 0)
Hi Gary and welcome. I wish I could answer some of your questions but I'm at a loss for words.
My goodness you have been to hell and back haven't you! Quite honestly I don't know how you've
remained sane. Even with my few diseases I feel like I'm going crazy. Perhaps it's this that makes
us folks easy targets for people to take advantage of us.
I really wish I could help more, but all I can say is try and keep your chin up, and take it from me,
in my humble opinion you're one brave person!!
Posted 1/1/2011 11:48 PM (GMT 0)
Welcome! You sure have been through a lot. I can't imagine.
Posted 1/2/2011 1:00 AM (GMT 0)
Gary,
Thanks for sharing your story and welcome. My mom has had crohn's for years and has stories about how treatment used to be in the old days-- the only treatment available were pred and surgeries. She suffered a long time before they finally did exploratory surgery to find out what was wrong, and then continued to suffer through additional surgeries and the many side effects of pred, which she has never been able to get off of completely. My heart goes out to all who have suffered so much due to this disease.
Betty
Posted 1/2/2011 1:44 AM (GMT 0)
hey gary, I've had cd for 40 years, and the same as you I got addicted to pain meds when I was really sick(near death) so I got hooked on demerol, back then thats all that helped me, but I haven't been put thru the wringer like you, I just want you to know that you are human and we do fall victum to pain meds because they take pain away, I'm doing better now I'm down to 1 vicodin a day and that is a miracle for me. but if I have what i call gas blockage then i have to take at least 4-6 vic's to take pain down, until gas passes can be 2-48 hr's so can be very painful. I hope this post makes you feel not alone in this battle

Posted 1/2/2011 3:13 AM (GMT 0)
Gary, welcome to this great forum. I think you are going to get a lot of good support here!

I don't know anything about your wife, but the story you started with above is a hard one to read, and then to realize that you are married and have been for a long time - I'm frankly impressed that you managed to maintain this relationship amidst all the agony you were going through and the addiction. You and your wife deserve a big fat attaboy for sticking through some really hard times. I imagine that a lot of bad habits got formed during this period - I mean behavior patterns that you and she probably got into during bad times. It's hard to change those patterns.

I know if I'm frustrated or annoyed with my husband I might tease him or say some not nice things just to poke at him. Perhaps your wife is still resentful of the hard times. If it's possible, now that you have a new outlook on things, I think you can talk to her or write her a letter and explain how you feel. Tell her you want her to treat you with love and respect and that you will do the same. Just being nice to each other all the time will make everything much, much better. And I think that kind of behavior will spill over into other groups, too. Once your in-laws see your wife treating you right, they will come along.

{{{HUGS}}}}
Posted 1/4/2011 8:39 PM (GMT 0)
 

Thank you all for all the good comments you have shared with me.  To Big Betty:  You said I think that your mother has never been able to totally get off of the pred.  During the early years the doctors had me on massive dosages of it.  Finally, one doctor said we needed to try to get me off from it.  He said that over the years it had already done quite a bit of damage to me.  The doctor started reducing the doses very slowly, like 2-3 mg per every couple of weeks.  I don't remember exactly how long it took, but I do know that it took between 6-12months and I was able to be totally off that drug.  I wanted to let you know that it is possible.  You're right Vicki about laughter.  I try everything I can to find things that will make me laugh.  Unfortionately, not even that can stop the depression and anxiety problems I sometimes have.  I have to make every possible attempt to keep my mind as busy as possible.  I also do this so maybe I have things to talk about with other people rather than just my health problems.  People seem to only be able to listen just so long to me talking about my health problems.  When I see someone, they ask me how I am doing.  I make to mistake of telling them the truth.  I have lost alot of friends who have just plain got tired of listening to all that.  I wish I could ask my wife to treat me with love and respect at times, but, I honestly feel with all that she has been thru being married to me, she really has all the right to sometimes say whatever she feels like saying to me.  Most of the time I don't think I can blame her for it. 

To artist guy- Did you say that you also had addiction problems with demerol?  I was able to finally stop taking it because of the pain pump I have in me putting morphine thru my system all the time.  Demerol came very close to killing me several times, and I think in some ways it did cause me to be somewhat insane.  I do know it did it's share of damage to my brain.  Even though I'm off right now, I am scared to death of what will happen the next time I have to go into the hospital for a long period and they start me up on it again.  I can tell them not to, but not much else helps me very well.  That drug addiction is affecting my life every day.  I don't feel as though there is anything I can do to stop it.  How did you do it? 

I'm not sure about this, but I've seen that some of you have listed the diagnoses and meds you have.  I guess I'll do it also.  I'm sorry:  low dose aspirin, pentasa, lyrica, prilosec, potassium, wellbutrin, glucophage, uroxatrol, lopressor, clonidine, singulair, coumadin, lasix, ropinirole, ativan, advair, imitrex, and morphine in the pain pump.  Diagnoses:  cd, osteoarthritis, rheumatoid arthritis, fibromyalgia, pulmonary hypertension, fibrotic lung, blood clotting disorder, migraines, liver disorder, heart attack 6 yrs ago, severe sleep apnea, high blood pressure, restless leg syndrome, drug addiction, acid reflux, depression and anxiety disorders, history of ulcers, chronic pain, degenerative disc disease, small vessel disease in my brain, and congestive heart failure.  Over 60 surgeries. 

Thank you all for caring.  Gary

Posted 1/4/2011 10:35 PM (GMT 0)
Gary, glad you came back! I think you should talk to your DR about the low dose aspirin. It's probably safe for most people, but for those with IBD, I think any aspirin is a big fat no-no.

And yes, you might feel that your wife has the right to say whatever she wants to you some times. But your post said you don't like it. I think it's a good time to get someone neutral to hear you both out (ie, a counselor or minister).
Posted 1/5/2011 7:10 PM (GMT 0)
 

Hi Kazbem,  I know what you are saying about the aspirin.  That is exactly the same thing my doctors told me for years.  Unfortionately, I started having more and more heart problems and the doctors said that even though aspirin is not advised normally for cd patients, that with my heart problems they felt they no longer had any options.  There seems to be alot of things in my life like this.  You also said in your previous entry, that you were surprised that my wife and I could've maintained anytype of a relationship at all over the years.  You're not the only one.  Every time I think about that subject, I still feel shocked that she has stayed with me.  Even though we have our problems, like I think all marriages do, I am so glad and thankful that she has stayed with me.  And even with the problems we do encounter, with everything she does for me, the positives far outweigh all the problems.  I honestly cannot imagine what I could possibly do without her.  I could never live alone.  There are too many things I either cannot do at all, or, have alot of difficulties doing them.  In fact, last summer I heard by accident that my sisters, my wife's sister, my mother and my wife discussed what would have to be done if something were to happen to my wife and I was left alone.  They all agreed that the only option would be for them to help me get placed into a assistive care living location.  When I accidently heard this, I actually was very shocked.  Unfortionately, after I thought about it for quite a while, I finally had to agree.  I tell you, initially that all really made me mad.  But now I just wonder how it would all be arranged for.  I have told my wife that she in no way can die before me.  As if we will really have the choice.  Have any of you had to think about something like this?  I sure hope not.  It's no fun. 

To Artist Guy---You said that you had been addicted to demerol also.  I was just wondering how you were able to get off it.  Also, I'm scared to death of what will happen if I am ever started on it again sometime in the hospital.  Have you ever thought about this? 

Hope you all are doing well this week.  Take care and hope to hear from you soon.

Gary

Posted 1/5/2011 10:26 PM (GMT 0)
 

Hopefully this doesn't turn out to be anything important, but, tomorrow I have to go see the neurologist to get the results of the eeg they did on my brain.  It's to determine how much damage the small vessel disease may have done to the blood vessels in my brain.  It may also tell how fast the disease might be progressing.  I'm sorry for bothering you all, but, this really kind of scares me a bit.  Thanks,  Gary

Posted 1/9/2011 9:25 PM (GMT 0)
Well, I saw the neurologist Thursday. She walked into the exam room and immediately started telling me that the eeg results showed abnormalities in the right side of my brain. Apparently, I've had a number of small seizures on a regular basis. She said in that area i've had damage that probably has changed both my memory and behaviour. My wife said that my behaviour has definitely changed in very negative ways over the years in ways that have been very difficult to explain. The doctor did say that perhaps with medicine, my condition might be able to improve. My wife said that she would really like me to try being more positive in a more general way on a daily basis.
Posted 1/9/2011 11:39 PM (GMT 0)
I really wish I had something helpful to say.

But all I can think of is that life is so unfair. A certain level of unfairness is fair enough, but that is just unfair to a degree I can't accept. Sorry, that's not exactly contributing towards the positive thinking. I hope things do improve for you, especially in your relationship with your wife.

Actually I can help with one thing... making the text bigger. Go up to View at the top, click on that, then click on Zoom, then click on Zoom In as many times as necessary. That's for Firefox, but it should be very similar for any other browser.

Not exactly life-changing, but hope it helps to read the posts better... :-/
Posted 1/10/2011 1:31 AM (GMT 0)
Glad to have you join. I'm fairly new myself.
Posted 1/11/2011 9:53 PM (GMT 0)
The neurologist started me on a new med that would hopefully help control the seizures and mini-strokes in my brain.  The first 2 days I took the new med, all I was doing was sleeping all the time.  I was so groggy all the time.  So the doctor stopped that one and put me on another.  We are really hoping that it might help my behaviour in addition to my memory.  My wife has said that I've been acting alot more angry, verbally aggressive and disagreeable with anything that I don't agree with.  She says that once I start being angry about something, I don't let go either.  I just keep going at it more and more.  Since this thing is apparently affecting my brain, I really not sure what I can do to stop myself from acting these bad ways.  If anyone has any ideas or suggestions, I will really appreciate hearing from you.  Thanks,  Gary
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