My story

[theone]

my story

Hi all. The name is Vinny and I have Crohn's Disease. There I said it...I've been saying it now for 21 years. I was recently looking over some old doctor reports from when I went to Childrens hospital in Boston. Wow I was on so many different meds like Prendisone, 6MP sulfasalizine, Flagyl, Folic Acid, Vital,Ampiicillin, Gentamicin, Clindamycin, Dilaudid....Gees thats a lot.

So i've been living with this for 20+ years and I've had my ups and downs. I've never had any surgery to remove any intestine but I did have cysts and abbcesses removed. I have spent time in the hospital a few times. I watched the first Gulf War from the hospital bed. My Doctor at the time, Dr. Alan Leictner said he has never had to remove anyones intestine and I wouldnt be the first. I thought "we'll see".

Growing up as a teen with Crohns was difficult but I never hid it from my friends. How could I considering I always needed a toilet. My friends and family always understood and helped out. They used to buy me toilet paper for my birthday. I truly believe that laughter is the BEST medicine.

I've lost 40 lbs in a few weeks, had accidents in my pants, turned yellow, I'm still tired to this very day. Had fistulas, cysts, abcesses all drained. Gone through a roll of tp in a few hours. Gone to the bathroom in places not worth mentioning. I'm a man and i've worn a tampon.

That was then....this is now. I just had my up-teen'th colonoscopy. This time I'm down to only "mild inflammation. thats down from sever only a year ago. right now I'm taking Pentasa...2000 mg 2X a day. seems to be working. i was reading through the threads and someone mentioned the dreaded PREP. Not so bad this time. I did the Halflytely. Only half the anguish.

I consider myself lucky. With all I've been through, (I don't consider it a lot but my family and friends do) I've never had a bag or any removal. I have met people who have. that's not fun. I get by...I'm used to it. I can't remember what normal is but who really knows.

I was in "remission" for a few years with no new signs in inflammation. That was one of the "UP" times.

If I can give anyone recently diagnosed some words.......It does suck at times but you can get through it. Find what works for you as far as what makes you feel better. For me its a steady diet of Pentassa and lots of laughter. Yes there are certain foods that help and hinder your condition, but thats all trial and error. Start small, keep a journal, its helps. If your going through really bad symptoms now then IMO medicine is your best option. But don't feel like you will be on them the rest of your life. Of course I'm no doctor and I don't play one on TV.

Thats only part of my story. I look forward to reading yours.

Keep your spirits high, your friends and family close, but always always keep a bathroom within your reach.

 

[Isla]

Welcome to the forum!

:welcome:

 

[theone]

Hi Isla & Pen,

Its nice to find a place to speak to others who can understand what we go through. You need to have a sense of humor.

What does dx16 mean?

 

[Isla]

She has been diagnosed for 16 years but had symptoms for 30 years. Like I have been diagnosed only a few months ago but I had my first flare like 8 years ago.

 

[theone]

thanks

then I guess I'm dx 21

 

[jed]

that makes me a dx 1.3



welcome to the forums vinnie!

 

[soupdragon69]

Hi Vinny,

Really good to see you found us. Will look forward to hearing more from you on the threads here. You have been through alot and yes I can see why you dont see it as that too. The silver lining of any cloud is invaluable and laughter is definately the best medicine.

Welcome!

 

[Agent X20]

Woohoo! I must be dx 36... can anyone beat that?
Welcome to the forum, Vinny

 

[theone]

Pen, I had a couple of surgeries. One time I was skiing and I wiped out. I had a fistula rupture and the infection spread through out my body. I was rushed to the Children's where they removed it. Spent a couple of weeks there in recovery.

I've never had surgery on my intestine.

I did have a cyst removed also that was in my left but cheek. It was a miss-diagnosis that got out of hand. 56 stitches later and my friends call it the shark bite.


Happy Labor Day

P.S. PEN what is RLQ and low R back??

 

[Isla]

Does that mean Crohns causes bad menstrual periods? Because that would explain a lot it that were true Pen.

 

[teeny5]

That would explain it for me too. Been on the pill for years, but then when I began loosing weight hadn't had a period since March. Then three weeks ago had the worst one ever. Worst cramping and was very heavy. Usually would only have it for 3 days and very light...minimal cramps. This one was a full 7 days with the whole works!

 

[soupdragon69]

Girls I would think that its possible that crohns impacts on monthly cycle aspects and visa versa (sp?). I realised looking back on last summer and my barium follow through and colonoscopy that both were excruciating. I had hit the wrong time of the month and my guts always play up in that I get bloating along with either diahorrea or constipation and my food cravings can be bad too which of course can impact on my gut.

So yeah definately I am in total agreement with you both. My last scope and barium a few weeks back were uncomfortable and yes painful at times but NOTHING like last summer and I am convinced it was all down to my having hit the wrong time of the month!

 

[My Butt Hurts]

Hi and welcome. You'll find a lot of support here. Shark bite?? On your BUTT??!?? That's AWESOME!! I had fistula surgery on my butt cheek right next to my anus and for a while it was like I had a second "crack". Not quite as cool as a shark bite though.
I too try to find humor in as much as I can about this awful disease. It just makes it easier.
Cute kids in your pic!

 

[Isla]

That is awesome to hear, because during my bad months it is horrible, on the floor can't get up and all that good jazz. And still painful on the months that are good. The oddest thing though is since I had my daughter I ONLY pass my kidney stones while on my period. Isn't that the weirdest thing you ever heard??

 

[Isla]

Positive they are stones since I end up in the ER or hospital from them every single time. My stones are caused by the shape of my kidney, it is one big kidney shaped like a horseshoe, so it sits in my body funnily. Think of an S bend in a pipe and all the sediment collecting and the bottom - that is what my kidneys in effect do. So I get some rather large ones (I have had to have surgical removal before) and there are ALWAYS stones in my kidneys. Why they come out only on my period now I have no clue - My only guess is I retain water during PMS and on my period I flush it out, thus picking up the stone in the process and trying to pass it

 

[XoBuBbLeSoX]

Not sure about anyone else, but I suffer terribly from monthly pains, always have since I was a teen. I remember being in so much pain I was crying on the floor from pain. My mother never kept asprin in the house, and I asked her to get 222's, although she never remembered. She was the one who figured it out everytime I was in the hospital from an obstructed bowel that I was on my period. The swelling from it would cause my intestines that were narrowed in the first place to get worse. I still get pains to this day...where the hell is Menopause anyways?? :ybatty:

Something to think about.I'm still waiting to start getting my difinitive diagnosis of Crohn's...g.i. appointment next Friday!!Only a few more tests left to make a difinitive of Crohn's over UC!Anyhow I remember periods so horrible from the age of 12 that I'd bleed through super plus tampons in less than 2 hours for 10 days straight,and cramps that left me doubled over and out of school for the duration of those 10 days too.What finally helped me was taking birth control pills...now I'm on Seasonale...4 periods a year=4 weeks of cramps per year.Could definitely be brought on by IBD since alot of us experience the horrible cramps.I'd reccomend Seasonale or Seasonique...and if you want to lose your periods forever as long as you take the pill Lybrel is great too...but I didn't like it much because my face kept breaking out on it.