New to this site and I would like to Introduce myself.

Crohn's Disease Forum

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Nov 30, 2012
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Hello everyone, I am new to this site and would like to introduce myself. My name is Michael Gallo, I live in Rhode Island and have had Crohn's Disease since 1983. I am a gay male with a life partner also named Michael for almost 20 years now. We were both married prior and we both have 2 children each from our prior marriages. Our children range from 24-30 and we also have a granddaughter who is 4 yrs old and of course we have "Max" our 1 yr old Golden Retriever. Michael and I are both 51 yrs old.

I was just approved for Permanent Disibility this past September after a very long battle with SSI. My biggest hurdle was that they said I did not look sick. I finally explained to them that if they knew me years ago when my normal weight was 200 lbs and my avg weight nowadays is 150 if I am lucky, they would not be saying I didn't look sick. I have suffered with Crohn's Disease my entire adult life. I have been on every medication known to mankind and have had over 20 surgeries for the Crohn's. I have nothing left in me to give, literally. I have lost my colon and had the permanent colostomy done in 1999. This was supposed to take care of the anal fistulas I suffered with for many years but it has not. I still suffer almost every day with the anal fistulas so much that I still have to wear pads in my underwear to control the odors and leakage. My Crohn's has been so far gone that by the time Remicade came out and we tried it, it did not help me at all. Other medications that have recently come available have not worked either. As of right now, my doctor has taken me off everything and running a gammit of tests and we are starting new. My fingers are crossed because I hate feeling sick day in and day out. I eat to stay alive, not because I am hungry.

I have worked in the Mortgage Lending field since 1982 and finally walked away from my Senior Mortgage Underwriting job in 2008 because I just could not work anymore. I was constantly in the restroom at work (which is horrible when you have Crohn's). My employers were always understanding until I was out of work for 3 mos to a year sometimes due to flare ups or surgeries. When I had my permanent colostomy I was out of work and on long term disibility for 3 yrs until the layoffs came and I got let go. I was very fortunate that Michael has a decent job as a VP at a local bank here so I was able to stay home. We managed as best we could, we just cut out the luxuries.

After all this time of living with Crohn's Disease you would think I would be used to it all but I don't. I deal with depression whereas I don't want to get out of bed in the morning, etc. I love Michael to death and I know he knows what I deal with every day but unless you have this disease you really don't understand. I am not taking anything away from him at all, he takes wonderful care of me, but I see his frustration when I just don't feel well. He wants to make me feel better but he cannot. I try to explain that this hurts and that hurts and oh yes this hurts too, so I am sorry I am not smiling but I just can't. He gets it, he leaves me to myself and it passes and we move on.

Wel, I hope I have not bored everyone with my story. I am very happy I found this site and I look forward to connecting with fellow Crohn's patients and helping each other out as needed. I know I personally need friends with Crohn's Disease because I do not have a one with Crohn's. If I can help/give any advice or just need a shoulder to lean on, I am more than happy to oblige.

Sincerely,

Michael
 
Welcome bosoxr3......we are in the right place ......even I joined this forum yesterday and am overwhelmed by the helping hands.....I am sorry to hear abt ur strugles....but u r nt alone....each one of us have our own share....let's fight together against crohn's....
 
Welcome to the forum, I'm glad you found it!
Michael seems like he is a great support for you! I don't know very much about all the different meds I have only been on a small handful of them, but hopefully your doctor can figure out a solution soon. It doesn't seem like you let this disease get you down for the most part, your story is very inspiring to read. I look forward to hearing about new treatment options and hope you get relief soon
 
Hi bosoxr3 and welcome to the forum! :D

You've been through the ringer for sure! Hopefully starting over will help figure out the best treatment plan for you. Have you tried Enteral nutrition yet? For me that's one of the few I haven't tried yet and I'm curious if it would work well for cases like yours (maybe not exclusively but something to talk to your GI about if you haven't tried it). Keep us posted on your progress! :)
 
Welcome to the forum, Michael!

Like Crabby, I'm wondering if you've tried enteral nutrition or any other diets to control your symptoms.

Are you taking any medications now?

It sounds like Michael is great! You're right - it's hard for someone else to understand what it's like to deal with these things, even if they're right by your side through it all. All we can hope for is that our loved ones will support us and try to understand. It sounds like that's exactly what Michael does for you. :)
 
Wow Michael, you sure have been through the wringer.

I was also diagnosed in 1983, at age 6. We're diagnosis buddies. ;-)

You're in the right place for some commiseration, advice, support, the works. This place is really great and there's no shortage of people telling you what you should/could do next, some of them even know what they're talking about.... I kid, I kid, everybody is very knowledgeable here!
 
welcome to the forum, as everyone has stated this is the place to be. I know how it feels to start over again. We're here if you need us And welcome aboard. From personal experience this disease has bankrupted me. We are in the same boat more or less.
 

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