The Feedback and Experiences Page: February 2001

Thanks to everyone who has been sending me their experiences and comments about the website. It's really nice to know that lots of people are getting some good use from it. Here's a sample of the mail I've received. Some letters have been edited for space. If you want your e-mail address displayed by your comments, be sure to let me know. Otherwise, I won't put it up. After all, we all value our privacy! Several people have a nasty habit of not fully typing their e-mail address, especially on the forms. "Biff" is not a complete address. I must also have the "@wherever. com" to send you a reply. So please, send all of the information for an accurate response. One more thing: I get so much mail everyday that sometimes I accidentally overlook a letter or two. If you don't get a response in a few days or so, e-mail me again and remind me, please! Thanks for your help, and your mail!

From: Cathrin

I know that this is a site for teens, I'm 24 going on 25, and I was diagnosed with this illness at the ripe old age of 11 years. I just want to have the chance to help other people who are younger than me be able to live a full and healthy life. I must say the living with Crohn's for the past 13 years has been a very hard battle, but I believe that with a positive attitude, we are able to overcome anything.

When I was first diagnosed, I never told any of my friends, because I felt "different" to them. I believed I was not able to live a normal life. I missed out on a lot of my childhood because I was always in and out of hospital. I think I really learned to accept my disease when I was about 16 years old in hospital (surprise, surprise), and I was told that I would eventually have a colostomy bag. That frightened the living hell out of me, because I thought that no-one would want me, that people would look upon me as weird, different and not normal. That was when I changed my attitude and looked at life differently.

I have been through ups and downs, changing of medication, depression, self loathing and the biggest thing was that I lost faith in everything. I lost faith in my doctors, in God, and in my parents. I blamed them for a lot, I used to think that I was being punished for something I did in a previous life!!! My parents, I think, have been my backbone, my mother would always say that if she could change her life for mine, she would.

I have had to put up with a lot of crap, pardon the pun, for so many years. Because of the Prednisone that I am taking, I have a bone condition, I have just been diagnosed with Diabetes, and I went through really bad depression, almost to the point where I was suicidal. I have overcome all of that, just barely though.

I am now a nurse, registered nurse, and am able to put myself in my patient's shoes and deliver the best care available. Please feel free to give out my e-mal address to any teens out there who aren't coping. I'd love to hear from them and be able to tell them that it is not the end of the world, that they can get their lives back. The trick is to take control, don't let this disease control your life, we are still the same person, and if no-one will listen, then they are not your real friends
anyway.

From: Matt P.

I was diagnosed with Colitis 2 years ago when I was 16 at that time is was very mild and had no problems with it. I had 2 flare ups that went away with my medication until about 2 months ago when I started getting violently ill, I lost about 25 lbs in 2 weeks and the worst pain I had ever felt all day and all night until they finally admitted me into the hospital. I was on IV Prednisone and TPN food bags but it failed and only got worse. My choices were to remove my whole colon, stay on Prednisone and TPN for another week and see if it worked or try Remicade which isn't legal in Canada. I picked the Remicade and filled out all the paperwork I was infused with it last week and left the hospital yesterday. so far it has been working but I'm still on Prednisone and Immuran. I'm getting my strength back but the side effects of all the medication is really getting to me. I haven't slept for more than 2 hours at a time in 2 months, I get head aches mood swings bad depression irregular heart beat and shakes. I'm not out of the woods yet but it is getting better and I don't think I'll have to go under the knife at this time, hopefully within a couple of weeks I will find out if this flare up will stay gone.

From: "earn1013"

My mom has CD. It's been about 20 years now. I was only a pre-teen when we finally found out what was wrong with her. I was scared not only for her but for myself as well. I did not know what to expect, always in and out of hospital. She was also going thru menopause so the mood swings and verbal exchanges were very hurtful. By the time I was 16 I started to feel a bit hateful. she wasn't like other mom's shopping with her had to be done in within one hour (including driving) which was hard. We could do the Mother/Daughter thing such as spending the day shopping and lunch. I am now 28 years old with three children of my own. I feel regret of my feelings when I was younger (I wasn't very supportive). I don't want my kids to have that same feeling with their granny. When she doesn't feel good she doesn't want us around. She still has extensive mood swings and the doctors don't help her whether she wants it or not I don't know. She take pain meds to make her comfortable. I hope other children with parents with CD don't do the same as I and if so talk to someone that will make you understand what is going on with their lives you can't do it on your own.

From: Matthew

From: Leslie

My name is Leslie, 14, and I have had a pretty bad time with Crohn's. I first went to my regular doctor who told me I was constipated so he put me on laxatives, which I hated. When they didn't work he put me on a strict diet of just like no sugar brown bread and stuff like that. Which is NOT good for Crohn’s. He then began to wonder what it could be, it took him awhile, but he crossed out everything but Crohn's. He even had me do a TB test. He then had me do the Upper GI, which I did unhappily. He gave it to me in a big adult sized cup and made me drink the whole thing. The place where it was done wasn’t a place specialized for kids it was adults and kids. When he received the results he told me there was no indication in the upper GI. So he put me on Asacol which is for the lower because he figured if it wasn't in the upper then it had to be there. He had me on 4 Asacol a day then he kept upping it and upping it to 8 (even though he told us 8 was the most I should ever take. It didn't do anything at all for me. He had just assumed that it was in the lower because of the test but I had gone down in weight and hadn't been absorbing the proper nutrients, which meant that it was in the upper because that is were you absorb the nutrients from. It was then that my mom decided to see another doctor. So I ended up going to him the next week. When I got there he told me right away that he wanted to find out where it was before doing anything which meant more tests. I did so many tests that kept showing nothing like the barium air contrast enema, ultra sound, and more. During this time I went down to 58 lbs. He finally decided to have me do the barium swallow again which really made me mad. When he got the results it showed that I had it in two places. So I had spent six months with the first doctor for nothing. After he found out where it was he put me on the dreaded Prednisone starting at eight and going down a half a pill a week. Then when he saw I was feeling fine he let me go down a full pill a week. After I finished them I felt almost normal except for the moon face and the fact that I now weighed 90. He then had me taking Pentasa. I was lucky that they found before it did more damage to me. It was the end of April when he diagnosed it and the middle of June (‘99) when I finished the Prednisone. I went into remission for about 9 months until Christmas ‘99. I went back to my doctor who decided to give me a month to get back on track. When I came back I wasn't any better so then he told me about the tube feedings. I really needed to do something to get better. My doctor wanted to do something that would last long so we crossed out Prednisone again and looked into tube feedings. I had two choices a nasal gastric tube (down my nose) or a gastrostomy (put into my stomach). After some thinking I decided the gastrostomy because I didn't think I could handle putting something down my nose and wearing it to school. I got the surgery done on February 10, 2000. It took me about two and a bit weeks to get back to school. I had to feed 2400mls of vivonex for 6 weeks and then I had 3 months off. I can't eat during my feeding times. The first time I did it for 6 weeks then I was off for 3 months the on for 4 weeks etc. for the next two – three years. Ever since I’ve started I’ve been better except when it came close to the feeding times I would get stomach aches which would make me want to start feeding again. Also I stopped taking Pentasa in September 2000, and about a month ago I started regretting my decision to stop. So I am now on Pentasa again, 2 at breakfast, one at lunch, and two at supper. It has been difficult but I'm dealing with it one day at a time. One annoying thing is when I'm on the tube I have to run to the bathroom. Also I can't eat anything except clear fluids example broth, Popsicle’s, and clear pop. So far I've been lucky I haven't had any particular food that bothers me but I'm just hoping it will stay like that. Even though it can be hard having my tube, if it will help I'll do anything.

From: Mary Lynn

I wanted to tell you that I believe you have one of the best Crohn's sites on the 'net; there's been many a night when I was unable to rest that I would visit your site and find comfort from something I read there. What may shock you is that I'm an almost 48-year-old woman who's been living triumphantly surviving the Crohn's battle all my life. Just goes to show that you can teach us old dogs new tricks! <grin> Thanks again for making something positive out of what would defeat a lot of people. When it comes to making lemonade out of lemons, nobody has you beat! And I will bet the farm that you will not only never be defeated by this illness; but you are going to see the day when it no longer exists!

From: Colleen

I would like to tell you what a great web site you have. I find myself getting attached to all the great people out there already!!

From: Aimee

I was diagnosed with Crohn's Disease when I was 17. I am now 28 and have been through it all. I have been hospitalized several times, pronounced dead due to a freak blood clot in my lung two years ago, and I have been through several clinical trials, and have been fortunate to have Remicade several times. My point is, despite all the turmoil I have been through, it has made me a stronger person. I just would like to help anyone who has any questions, or that is discouraged. I just want to let anyone out there know, regardless of all the crummy symptoms of the disease . You can have a quality of life. It took me a while to graduate college,
but I did it. I now have been doing ironman distance triathlons and working as Cinderella part time at Disney. I just would like to tell anyone, not to give up.

From: Kyra

Thanks for all your hard work on the site. It's great for those of us with Crohn's, and it helps raise awareness in those who don't have it, too.

From: Chris

I was diagnosed with Crohn's in may of 2000. In the early summer of 1998 I started to get short pains in my stomach while I was on Cross Canada vacation. I started to notice the pain becoming more frequent and painful with in a 15 day span. (All out of the blue) The unknown flair up lasted for about two week and went away, then I felt normal again. Then it went from a flair up every 4 months to 3 then 2 then one then about every three weeks, two weeks, one week to having attacks every 2nd hour of every day, even more so when I ate. This went on from about the summer of 1998 to summer of 2000. From 1996 to Sept 4 of 1999 I was having great problems in my life from being poor, divorced parents custody battle, trying to stay out of jail, failing in high school, social services, my step dad was an alcoholic, unknown pains in my stomach and all the problems of Crohn's and also fighting a great battle together with my mom such known as cancer, we lost like so many others. (RIP MOM) Right after she passed away I got kicked out at 17 had to find a job and a place to live fast still having great pain in my stomach. My tolerance for pain in any form is high so I fought on and managed to find what I needed most at that time. Although the pains where getting worse, I was losing weight slowly. Finally one day at work I had to leave because of the pain, So I went to the medical clinic as fast as I could, the doc told me it was stress from my life. I figured that he had to be in the wrong because my life had been getting better but the pain got only worse. I lost my job because of that day, could not pay rent, had to find a place to live fast. I did. I held off until about May of 2000. My life had slipped off the tracks again due to this pain in my stomach this time. In May, I meet a real good doctor who had great hook ups through gastrointerologist M.d and p.h.d. I went through a series of test like upper barium, blood tests, etc. I felt like a dying lab rat. Not to mention that I was starting to look like one to. Finally they found out, it was Crohn's I was so scared I felt all alone and still do in a sense.

They put me on medication like, you know "Prednisone" and a bunch of other stuff. After about two weeks on Prednisone my stomach felt good and my mind was going crazy I felt the side affects of Prednisone, like, paranoia, no energy, can't talk to people, it was weird for me.( It's not always like that). I found out who where my true loyal friends and who weren't( The week minded people, uneducated got scared of my illness and me). I new there was no cure for it, I really understood it, but it still got worse. Time for surgery! Lucky me my doctors picked the day before my 19th birthday to have surgery.( Can it get any worse then that). I got surgery, I looked so bad pail, skinny plus I had tubes coming out from everywhere. Today has been three weeks after my 10 fistulas and 2 inch crohn's on my right side were removed. ( One foot and 1 inch of my lower intestines were gone). I am feeling great so far, looking great, confident ready to get my life on track. I fell like I was given a second chance in life by god, so I am not going to screw it up. Now I am very picky about what I eat and how I treat my body, it is very precious to me now. Oh yeah I am gaining weight slowly but surely. I have job interview coming out of my pockets, I am finally happy again. To all those who are going through what I am going through or have gone through, stay strong, don't let others bring you down, live your life to the fullest, stay on top of life. Non-understanding people are only week and uneducated, push them away, pull to you the ones who care for thetas all you need. Never give up hope for the cure, it looms ahead of us.