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Help: I Have Crohn's Disease

Hello Everyone, My Name Is Mario And I Have Crohn's Disease.When I Was young say about 20 Years Old, I started, Having Symptoms Of Crohn's , But not That Bad. Started Getting The Watery Diarrhea, Feeling Weak Tired Etc. As Time Would Go On It Got Worse. My Medical Doctor said I should go to a Crohn's Doctor, I Went To Him Explained Had A Colonoscopy , and He Removed A growth, But Was Nothing And then gave me some medicine, I was with this doctor for 5 years, all he would do is walk into the room , talk check my stomach , give a prescription then leave.
Then I Changed Doctors, Same Cycle, I was like something is not right, because you are the owner of your body and can tell when something is not right, so long story short, being mismanaged for my Crohn's disease.
Then In 2008 Everything went to Hell !
In June, Iwas getting tired of the diarrhea, and what I could and could not eat, but then it was getting to a point ate or drank anything put me right in the bathroom, 5 minutes after I ate. so I was like do I stop eating not to go to the bathroom ?
Then I Started To Feel Weak, And Just Sit On The Coach, I was losing weight, From Going to the bathroom, and let me tell you it was burning when the watery Diahrrea came out, So I Used Some A&D Oinment On my butt so it didn't cause Burning . Then I Got Real Sick Where i Had To Be Brought To A Local Hospital, They Put Me On IV Fluids, And Just left me in the room and checked each day, After 1 month I said get me out of here, they did One colonoscopy, before transferring me to a hospial in white plains Ny. there they made drink some kind of charcoal to see where I was leaking internally ,lol they were like oh your swollen we cant do colonoscopy, Now I Was Getting disgusted , No One Telling me anything, just taking up room in a hospital for another month, So I got on my computer , and did some research For A Crohn's Doctor, I Found A Doctor Bauer In Manhattan New York. I Called His Office And Explained My Situation, They Were Like Me Need To Get You Here !

I Was Transported From The White Plains Hospital by Ambulance, To Mount Sinai In Manhattan New York. Realize I Started This Hospitalization Since June 10 2008 And Now It Is August 7th 2008.
I met with Dr Bauer, he reviewed my history, and said what took you so long to get here ? He said to my wife, any longer, without the correct treatment, your husband would be dead !

In 48 hours I went threw A battery Of Tests, Colonoscopy, andthen Dr Bauer, Came And Spoke With Me And My Wife. He Was Like There Is A lot Going On inside You, and glad you made it here, we need to schedule you for surgery ! I was like what ? He Said I see there is a lot of things going on with you, and we need to go inside to correct the problem. I was Ok And The Surgery Scheduled The Next Day.

After A Long 5 Hour Surgery,they had to remove 2 foot of deteriorated colon,they had to fix a hole in my bladder the size of a half dollar, ( which was causing the burning in my butt, when i went to the bathroom, and many fistulas in my body connecting internal organs, that had to be removed as well as my appendix ! My white cell count was over 25,000, but after the surgery, went back to normal range 10,000. Now the Plot thickens, I started to get sick again,my white cell blood count hit over 25,000 again, I was why ? The doctor had to remove the drain, which meant he had to remove all 22 plus staples, and they had to clean and pack the wound each day,the hole was so big , you could fit a football inside me ! The to top it all off, I contracted mercer, which could have killed me so, I had to take meds for that.
After being in Mount Sinai for 3 weeks I finally was sent home. I was like Excuse Me, Are you going to stitch this hole in my stmach, or just keep packing and cleaning it ? I live upstate, so what will I do ?
The Doctor said unfortunately once the skin is cut , after a certain amount of time the wound would have to heal from the inside out, I was like, you got to be kidding, he said no, and I do not want a suction pump on this, let it heal natural, I was yeah right, then they gave me meds and sent me home.

Now for 7 months I had a registered nurse come 7 days a weak to change the packing clean the wound, and measure the growth of the skin,as well as have a physical therapist come to my house for seven months due to muscles getting weak, and laying in a hospital bed for three months ! I slowly got better, Merser cured and the hole, actually closed, well I do not have a belly button any more, it was amazing to see this happen, but now I have a outtie button, I will have to upload a picture soon.

It is now seven years after the surgery, I feel much better, but the Crohn's doesnt go away. Let Me Tell You Diet Is The Key To What Will Keep you out of the bathroom. Sometimes you can cheat, but you will pay for it in the end ! Everyone body is different, so you have to make a list of foods you eat and which ones will cause a reaction, which won't !
My Example, I am Italian, I Love Tomato Sauce, but it doesnt like me, that gives me the run to the bathroom, as well as orange juice, anything that is acidic, will cause a problem, I know it happens to me ! I found a way to have your cake and eat it too, lol, Prior to having something acidic I will have a banana, for some reason the potassium in the banana coats the stomach, so everyone in the stomach gets along and no family feud ! I am also Lactose intolerant, so I have to make pizza at home using lactose free products, or just have a slice out, but bring a banana, lol, is that a banana in your pocket, or are you happy to see me !

As With anything It is all trial and error, I am thinking of taking stock out on, Scott toilet tissue ! One of my issues is driving, because I have to map out where all bathrooms are along my route, otherwise there will be a problem if I cannot make a Crohn's Stop. An example of this Is Always keep 2 rolls of toilet paper in the trunk of your car ! When I was driving on a parkway, and no stops to get off, I was lie oh, i have to go to the bathroom, so I pulled over and said well I will go in the woods, i was like do i have any tissues, ( AH see the toilet paper in the trunk ) I was like got to go, no paper, but run.I get into the woods deep enough so no passing cars can see me, and I proceed to go to the bathroom after pulling pants down, watery as usual, oh butt what a relief ! then I am like oh oh , what will I use for paper ? I thought for a moment, and said hmmm, ok try using a couple of leaves, tried to clean that didnt work, then I said AH Ha ! I took my pants off took my under wear and cleaned myself, ( Note Also Carry bottled water in car, to help clean area) . The I put my pants on, and had this dirty underwear in my hand, I was like there is a tree branch I hung it on the tree, so it will be a marker for me if I ever come by this way again, and hey, free ad for fruit of the loom underwear ! That My Brand Lol. I get home take a shower, Then finish doing things and go to bed , next morning I feel Itchy On My Butt, And Come To Find I Have Poison Ivy On My A--, So Now I have To Go To The Store To Buy A Cream And Benydrl, For the itching, Conclusion,
CARRY TOILET PAPER, IT DOESNT BURN YOUR BUTT !
I Will Write More As I Find Things Out, any questions ask me, I may not be a doctor, but I have found ways to deal with the Crohn's
Mario Mariani
 
Last edited:

Jennifer

Adminstrator
Staff member
Location
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Hello Mario Mariani and welcome to the forum! :D

Thank you for sharing your story with us. Also sorry about the poison ivy (I saw that one coming :ack:). Do you take any medication for Crohn's? Even though you had surgery it's important to keep the disease under control. It sounds like you're still having a lot of symptoms with the urgency. Even with that amount of bowel removed many people do have normal bowel movements again so I wonder if your disease is still active.

I had to pack my wound after my surgery as well but it didn't take as long since mine was about the size of a fist. My mom changed the bandages twice a day for over a month. I was also hospitalized for around the same amount of time as you were but eventually got my diagnosis there at the hospital. We have some things in common, nothing fun though like a trip into the woods. :roflanim:

Again welcome!
 
Hello Jennifer, Thanks for reading, it has been a long drawn out battle, even with trying to work, where right now I am not because sometimes, depending on what you do , when you get the call, you have to run ! I take Pentasa 3 pills 2x a day,, morning and night, just recently, went to a new doctor, had a colonoscopy,and he was like oh, we will put you on flaggil? I was for what the pentasa works, then I looked it up and the med is for lady problem or for bacterial infection ? I was like you have to be kidding me, I also looked into the side effects, saying it can cause rashes,Diarrhea,Lactose intolerance cannot take,vertigo,etc, so I opted out of that, then the doctor is like your doing a good job with the pentasa stay on that. He was like oh I see some ulcers when the small intestant connects to the large intestine, where they had to remove 2ft. I was like the ulcer would be there, But sometimes Doctors are hard to find good ones, where is the doctor in it to help the patient, or just there to make $$$$. He Is A new doctor to me, but if I had to do anything major it is back to New york city for me, Live in upstate new york so only 1 hour drive, so will see where it goes, thanks again for answering, and also you can contact me anytime, if you need answers to crohns, or to just talk bout it, have a great day Mario
 
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