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Crohn's Disease Forum » Your Story » My introduction


07-01-2015, 11:41 PM   #1
vpasqual123
 
Join Date: Jul 2015
Location: New Jersey
My introduction

Hello fellow IBD survivors, I know I should have joined this and other support or informational groups online and in Person along time ago. Sometimes, however time is an issue when it comes to something to join in person. Anyway, My story is so long and I have been through so much it would be nearly impossible to write it all in a post. The start of basics: I am a forty six years old Male who has had Crohns pretty much my whole life. I had symptoms as a baby my parents would tell me but it did not truly kick in until my mid teens and oh boy was it bad. Just 5 years ago I was told I had Colitis too in the large intestine and rectum. I have found through experience that what works best for me is to always try to look on the bright side and always remind myself when times were worse for me.. I never, however, feel it is appropriate to compare stories as if you want to be correct. All of us have so much more to deal with already then to have to argue with someone about things like "well I had this and That and you only had XYZ" No, never. We should talk with each other tell our stories, concerns, ideas but in a way to try and bond with fellow IBD sufferers. Well, This is my Introduction and I look forward to chatting on here much more. VMP
07-02-2015, 04:15 AM   #2
POTTYTIME!
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Join Date: Jan 2015
Location: USA, Mississippi

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Welcome,

I think, "I should have joined sooner", is most of our first lines. Sorry you had to join, but under the circumstances, glad you did. Plenty of people to talk to along with plenty of info/life experience.
07-02-2015, 07:23 AM   #3
vpasqual123
 
Join Date: Jul 2015
Location: New Jersey
Love it POTTYTIME! Thank You for welcoming me. I am confident I have much to offer people on this site as well as help from others.

I will try not to "ramble" on but that, unfortunately, is what I do. I try now to take breaks and think in between. Anyway I also am like a grandparent and always start with a time line and go far. e.g. Well, it was in 1940 that I etc etc LOL. In addition please forgive my grammar and or spelling even with spell check on.

Like I first mentioned I have both Crohns and Colitis and my doctors just call it exactly that Crohns Colitis Disease. I was diagnosed with Crohns, officially, in 1987. However I had symptoms of Crohns since I was a baby. At that time since I was so young in 1985 the doctors did not want to label me with the disease immediately. Now, with all the advancements They can diagnose baby's. In 1985-1987 which spanned a 3 year time, it was frustrating. I was sick but no doctor could tell me why and I just wanted to be a normal teen. I did though. I never let my illness stop me from doing most things a teenager does. However, my passion was baseball. At the age of 14 before I got bad symptoms I was 6'0" and 190 pounds. I was a pitcher who through in the mid to low 90's with command and control. I found myself playing in a local summer league with kids 17-19 and maybe more. I was easily able to win respect because of my pitching. I was striking out these All State and All County guys with ease. My coach did take notice and he made some calls and before I knew there were scouts at the games I pitched just holding up that radar gun. I was never officially told I could be drafted after High school when I was 14 but my coach and others were saying "you will go pretty high in the draft in 4-5 years for now".

Well, wouldn't you know it my health started dropping fast. I had all Crohns like Symptoms. In a span of less than 12 months I went from 190 pounds down to 115! I could not eat and I would throw up and have pain and the runs and more. I was devastated and my biggest challenge , up to that point, was to try and explain this to my coach, teammates and so many others. I got answers like "You Look sick man what is up are you on drugs or doing something bad" Like I said I could not explain it so how could I tell others. When I got to a varsity baseball level at 16-17 I was not even close to the pitcher I was just a few years ago but i did not quit. If I had to vomit, I would take care of business in the woods and come back to the ball field like nothing happened. In my mind I wanted to be a normal teen and i just brushed my symptoms off and just denied to myself that anything was wrong. Needless to say one hot summer day I was playing outfield and collapsed. My body could not do baseball anymore. OK, Hopefully I can stop posting now and remember where i left off. Thanks VMP
07-02-2015, 09:11 AM   #4
POTTYTIME!
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Location: USA, Mississippi

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Sorry to hear that. Man, thats alot of weight loss. I feel its a MAN THING to wait until the last minute when we hurt, worsening the undying problem. I had symptoms for years also. Now I have been out of work almost 7 months. So how has it been treating you lately? Any surgery over the years? Taking meds or going without?
07-02-2015, 09:17 AM   #5
4Seasons
 
Join Date: Jul 2015
Hello, vpasqual123!

Like you, I was Dx with Ulcerative Colitis. Unfortunately, my symptoms have gotten worse, and mimic Crohn's. I had an Upper EGD last month and was told that while I have esophagitis, duodenitis, a peptic ulcer and a my gall bladder fills to quickly, my biopsies are not consistent with Crohn's.

Can you share your journey from the UC Dx - to a more accurate Dx of Crohn's?
07-02-2015, 09:45 AM   #6
vpasqual123
 
Join Date: Jul 2015
Location: New Jersey
Sorry to hear that. Man, that's a lot of weight loss. I feel its a MAN THING to wait until the last minute when we hurt, worsening the undying problem. I had symptoms for years also. Now I have been out of work almost 7 months. So how has it been treating you lately? Any surgery over the years? Taking med or going without?


I will answer your questions above: I have good days and bad days. I am on social security disability for this and some other conditions. I would say in a given month it is 50/50 Good days/Bad days. Unfortunately some of the bad days I get in so much pain and have watery diarrhea 7-8 times a day. Then I have to be hospitalized. Over the last 2 years I have had 8 hospital stays. I have had surgery to re sect part of my small intestine, Given a temporary colostomy bag and was reversed, I had a very life threatening infection that were not responding to anti-bio-tics and they had to open me up and drain the puss and that is when I got the colostomy bag. I don't have it anymore and thank god for that. I had to have my gall bladder removed but because of the scar tissue they had to open me up again. Lastly, in an effort to try and calm my complications from all my scar tissue, they had surgery and the whole intestine was coated with some kind of film that slowly dissolves over a year or so and is supposed to calm the scar tissue. I can not say it worked or not really. Needless to say I cannot have more surgery or I will wind up living with a permanent colostomy bag. I am on Imuran, Pentasa, Bentyl and i always take a pro biotic. I am still living my life and want to get a PT job soon and work myself slowly back to FT work and FT Life. I am getting there one step at a time. That is so important you must take things like this one day at a time and not try too much to think far ahead. I can say though I am making progress. I WILL BE BACK!!! Termination of Crohns....
07-02-2015, 10:16 AM   #7
POTTYTIME!
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The humira injections helped me in not having a resection done. Other than that, the crohn's disease has ravaged my body. I have 3 to 10 BM's a day. Had fistula surgery 3 and a half weeks ago. Have AVN in my hips. Crohn's related spinal arthritis and two degenerated disk in my lower back. Gallbladder removed. I have the Medial Branch Block of my spine scheduled for 3 different procedures over the next month and a half. I keep hoping to get back to my job offshore, but with all my issues, I look like damaged goods. About ready to apply for a study and play guinea pig. Its hard to believe there isn't a cure for this disease. But like any other disease, there isn't any money in the cure.
07-02-2015, 12:21 PM   #8
vpasqual123
 
Join Date: Jul 2015
Location: New Jersey
Ask Your GI specialist about the condition Ankylosing Sponkylitis (I think that is how it is spelled). It is what Crohns patients develop not spinal arthritis. This disorder is of the spine and all other arthritic type conditions are mis-diagnosed. I have AS as it is called.
07-02-2015, 12:43 PM   #9
POTTYTIME!
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Location: USA, Mississippi

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Thats it. I couldn't remember the name. Spinal arthritis is my terminology do to I know is arthritis in the spine. My GI is the one who started the process of getting CT SCANS of my spine. He knew it was taking over. After the ct scan, I found my spine doctor then my Nero surgeon that is going to do the medial branch block starting next week. I just get mad because the doctor's office dont seem to move as quick as I do.
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