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IceWolfie

Guest
Hi everyone! My name is Michelle but y'all can call me Michie. This place found me through myspace. I'll tell you about my life with Crohns, or at least, everything I can remember of it!

I was dx with Crohns at 12. It was July, right after the 4th. I remember cuz I missed the fireworks that year cuz I was in the hospital. That would become a normal thing for me. The worst time of the year for me is Summer, cuz of the heat I guess. Anyways, I had been sick for awhile and I had lost 40 lbs in a month, that made the doctors put me into the hospital and run test. At first they thought I was making myself throw up, but it was so not true. When I was told I had Crohns, I thought "okay, give me pills and make me better", little did I realize how it would totally change my life. I don't even remember what life was like without Crohns.

After the Dx I was in the hospital every single summer of my teenage years. I would go in around mid June to July and got out just in time for school again. I've been on so many different drugs that it would take a whole new post to list them. At 17, my senior year of high school, I had to go in Sept to have an Ileostomy done. They removed my whole large intestines and 9 inches of my small intestines. It was scary, no one really prepared me for what to expect and I was only shown once how to change it. Thankfully I'm a very fast learner and I change my own bag. I would never make anyone have to deal with such a nasty chore. I missed 3 months of my senior and after recovery I did 6 hours of reg. school day, 3 hours of night classes 3 times a week to make up missed cerdits, helped coach the varisty hockey team, and somehow found time for friends. Then I had a remission that lasted about a year and half.

The Crohns came back with an attitude that would make anyone scared! I was about 21 and I started to feel sick again. Again, I thought "give me more drugs, make me better". Well, they did, and for 2 years we played with different drugs as I got worse and worse. At 23 we decided to see a surgeron (I LOVE my surgeron). He said I had to have my rectum removed. It was too diseased and it was making alot of problems for me, mainly fistulas. So we went ahead with the surgery. Then 5 weeks after the surgery we found a HUGE abscess. I've learned to hate those. I had to go back in for a surgery for that, we left the rectum wound open this time and did packings. The Crohns is so extreme that is effects my skin, bones, teeth, and eyesight now. The open wound wouldn't heal because of the Crohns in my skin, it's done some pretty painful and nasty things to certain areas of my skin. We packed this open wound for 6 months before any improvement was seen. It took a lil over 2 years to full heal.

I've had 8 surgeries in about 3 1/2 years now. Most of them had to do with fisutals and abscesses. In June of 2004 I had a revision of my ileostomy due to 2 big abcesses making it impossible for my stoma to work. So we moved it from the right side to the left side. Now my stomach really looks like a map! My bones are very weak with osteoporsis now because of the medicines. I have quite a bit of pain from that and I'm now trying to lose weight from steriods. I wear reading glasses because they say my eyes are starting to be effected. And my teeth are thinning because I don't make enough floruide in my slavia (?). It's loads of fun!! lol. I currently need a surgery because of scar tissue just under my stoma. It's caused a partical blockage. But everyone wants to hold off as long as possible and give me a break from the hospital for awhile.

At this time I'm having some trouble but it's bearable. I'm currently on Remicade once a month, which is hard on me because I have reactions with this. I have trouble breathing during the treatment and end up needing oxygen and it takes about 4 to 5 hours to finish the treatment. I'm also currently taking Pentasa, I just stopped Prednisone 8 weeks ago, Entocort, Purinethol, Flagyl, Ferrex, Fosamax, Zoloft and Zyprexa *for depression*, Anexisa *for pain*. Plus, a mulit-vit. usually the Flintstones because I can chew it and have my body absorb it!

Now, things they don't warn you about that some of you may experience. Summer heat is hard on me, it seems to upset my Crohns disease. The sun is harsh. My skin is more senitive because of the medicines, so I burn so much easier. I feel tired often, even though I fight through it, most doctors forget to tell you how tired and worn down you'll feel. Many people, including myself, have ended up with problems with our veins and now I have a port in my chest. Veins seem to become differcult due to scar tissues and other reasons. They also forget to tell you about the bone weakening and stretch marks that come with any steroids. I experience insomnia, stomach cramps, and if you have an ostmy bag the skin around the stoma is usually sore. I get nausea out of nowhere sometimes and usually in the worst places, like malls! There's a funny story behind that one. Hair loss can be common, at least, with me. And all kinds of anemia. And along the *nicer* things are skin lesions, fistuals, abscess, fissures, strictures, I've had all of these. Anyways, now that I've wrote a novel. You know my life with Crohns. Believe it or not, I also experience life outside of this disease, but it's always somewhere on the back burner. You learn to deal with it, enjoying the times you can get out and experience things. You also learn to keep a brave face on for those you love, and myself, I keep a sense of humor and a feeling of hope. There's worse things to have. And even though I'm not a religious freak, I know from the bible that God has chosen a path for everyone, perhaps mine was to educate people about this disease. When you suffer from a disease, as we do, it brings you closer to God, at least, that's what I try to believe. So, keep hope, know that your relationship with God is strong and that you were meant to have this for a reason beyond your understanding, and LAUGH!!!
 

mikeyarmo

Co-Founder
Thank you so much for sharing your story with us all. It is truly amazing to see what you have been through. It is amazing to see that you are still fighting on and coping with it though, and even though you have suffered through a lot you are definately an inspiration to us.

It is unfortunate that you have been through so much, but hopefully this is a place where you can share your experience with others. As you stated their are often side effects that the doctors did not tell us about, and it is always good to hear when you are not the only one suffering with a certain symptom.
 
R

ReeRee

Guest
Hi Michelle! Our stories sound a lot alike..lol. I'm not a religious freak either, but I do believe in God and know that He has a wicked sense of humor at times. When I was young I had a bad weight problem, like 300 lbs worth of weight problems. I asked God to make me skinny and WHAM! He gave me Crohn's. Since then I've learned to BE SPECIFIC!!! LMAO!

I've had a lot of the same problems you've had. I have a colostomy but it's supposed to be temporary. This is my 2nd one. I'm eaten up with fistulas (the worst one is rectum/vaginal...ew!) right now and waiting to be strong enough for my next surgery.

I hate summer time!!! I'm sick as a dog for the entire summer. When I get hot, I throw up and then I faint. I'm a really fun summer date...ha. I guess I should really move someplace farther north where the summers are a little more mild....like Alaska maybe..ha. Louisiana in the summer time is NOT a pretty thing. It's like America's armpit here in the summer time. You actually have to swim thru the humidity and heat.

I'm on MySpace too. You should look me up, or i"ll look you up, or which ever happens first..lol. I get the computer when my son doesn't hog it..ha.

Keep laughing! I swear it's the only way to survive this thing! I'm thinking of writing a book called "Clean Bathrooms Across America".
 
S

SuperSabre

Guest
Hello everybody...I'm a 65 year old CD patient, diagnosed when I was 14. I can't believe its been over 50 years with this stuff.
I have had two bowel resections over the years and my surgeon tells me he can do no more surgery without going on TPN. My back is to the wall now.
Taking Pentasa and Humira, but continue to have massive diarrhea and gut pain. It seems that almost anything I ear causes pain about two hours after eating.
I drink much Ensure and have been able to maintain my weight, but the pain is what I can barely handle. I am still working and have a great family and want to maintain some quality of life.
I suffered great pain for many years and recently my GI gave me Vicodin-5 for pain, but he was uncomfortable prescribing narcotics and now my GP has me on Vicodin-10 3 times daily which barely holds the pain.
I have been on Remicade which stopped working after four years, and 6MP which caused a bad case of pneumonia.
I'm kind of worn out after dealing with this stuff for so long and just want to live the rest of days without too much pain.
I'm really struggling with this narcotic thing. No narcotics=pain, taking narcotics= dependence and possible addiction. That's my story.
Great to have found this group
 
SuperSabre said:
Hello everybody...I'm a 65 year old CD patient, diagnosed when I was 14. I can't believe its been over 50 years with this stuff.
I have had two bowel resections over the years and my surgeon tells me he can do no more surgery without going on TPN. My back is to the wall now.
Taking Pentasa and Humira, but continue to have massive diarrhea and gut pain. It seems that almost anything I ear causes pain about two hours after eating.
I drink much Ensure and have been able to maintain my weight, but the pain is what I can barely handle. I am still working and have a great family and want to maintain some quality of life.
I suffered great pain for many years and recently my GI gave me Vicodin-5 for pain, but he was uncomfortable prescribing narcotics and now my GP has me on Vicodin-10 3 times daily which barely holds the pain.
I have been on Remicade which stopped working after four years, and 6MP which caused a bad case of pneumonia.
I'm kind of worn out after dealing with this stuff for so long and just want to live the rest of days without too much pain.
I'm really struggling with this narcotic thing. No narcotics=pain, taking narcotics= dependence and possible addiction. That's my story.
Great to have found this group
:welcome: SuperSabre! You might want to copy this post and start a new thread under the "Your Story" section so we can properly welcome you here. This is where everyone is accustomed to welcoming people. Glad you found us!
 
Welcome Ice :) I,m lost for words! Thank you for sharing your story. I just can't believe your strenght . Very glad to here you have a relationship with God :)
 
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