Feedback and Experiences: July 1998
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 some 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. "AceGuy" 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 day or so, e-mail me again and remind me, please! Thanks for you help, and your mail!
From: Anna
Hi,
I'm sorry - I visited your website really quickly yesterday, and I copied down your email address, but I didn't even get a chance to write down your name. (I was playing on the internet at work, and came dangerously close to getting caught.) I think what you have done is great - diseases like
Crohn's and colitis are so often not talked about because people are too ashamed. I think it is especially difficult for teenagers to find a way to open up about these sometimes
embarrassing diseases.
I was sorry to read that you're in the midst of a relapse. I hope you are feeling better soon. I guess I should tell you a few things about myself... My name is Anna. I'm 19, and have had ulcerative colitis for about three years now. I've been taking
Prednisone for a year now, and can relate to some of the Prednisone-horror stories on your website. My boyfriend has a really hard time dealing with the mood swings the drug sometimes causes - and no matter how many times I explain it, he doesn't seem to understand - and I can understand that it would be hard to understand... it just sounds like I'm making excuses for the fact that I'm sometimes a little bitchy and irrational.. or else, suddenly very very sad... which isn't fair to him, but I really have such a hard time controlling it - and I never used to be like this. I was so glad to read that some other teenagers have the same problem. It was really reassuring.
Right now I am living in Ottawa, Canada with my mother, but in September I am moving to Toronto to go to University. I'm going to be studying mass Communications and English. I'm also going to be living in residence, which makes me a little nervous - for one thing, there are a lot of things I can't eat (and I understand you are in the same situation) - and I'm a little worried that my
roommates are going to think I'm strange when I'm in the kitchen making all sorts of weird-o-recipes with no milk or flour or sugar. I'm also afraid of feeling left out because I try as much as possible not to drink alcohol (it makes me feel like death.) Also, the bathrooms are shared and co-ed, which, for obvious reasons is a concern. I just don't want everyone to know that I have colitis. I know I shouldn't be ashamed of it - but it's hard not to be. I just want everyone to see me as a normal teenager
- which I guess is sometimes a lot to ask for.
Thank-you again for all of the time and effort you put into the website. It really helps to feel that I'm not the only one.
From: Lori
We want to thank you for your wonderful website. Demi was diagnosed officially with Crohn's this past April. Before we thought it was UC. We read about you in Florida Today. We live in Palm Bay and worked on Dave Weldon's campaign. In our area our
pediatrician had only heard of one other case of Crohn's in a child. We have to drive to the Nemours Clinic in Orlando for Doctor's visits. Your site has been very helpful!
Hope you feel better soon and thank you again!
From: Jeff
Last Halloween I was diagnosed with Crohn's. I was a pretty severe case that had gone
unnoticed for years. When we finally found the problem with my pain the doctor put me on the
usual....Prednisone and something called Pentasa. Now I thought things were going to improve, but I was wrong. My condition worsened and my doctor kept increasing the
dosage of medication. Soon my body was dependent on the Prednisone and my condition didn't improve. I finally ended up in the emergency room at the hospital last April. I was there two weeks and had a major operation. It turns out the Crohn's had infected a large part of my intestines and was eating through to my bladder. The
surgeon had to remove a large part of my small and large intestine, seal the hole in my bladder and remove my appendix which was also infected. I was in bad shape. After the operation I was in better condition than before but had to wear a colostomy
bag. Which is a procedure in which your separated ends of your intestines are sown to the out side your stomach. That way they have time to heel. A very uncomfortable and
embarrassing situation especially only being 22. Ten weeks later I returned to the hospital to
finish the procedure. The doctors reattached my intestines and removed my gall bladder. I was laid up in the hospital for nine days and missed my birthday. Another major
surgery, but I am free of all Crohn's symptoms. I'm still on medication (Metharexate and Pentasa) but feel no pain or discomfort at all. It has almost been a year since all the pain started and I'm happy to get my life and best health possible. The Crohn's can come back at anytime but the medication should delay it for many years. So there is hope. It was a very
painful experience that I thought would never end, but when all seemed bleak a flash of life came though and saved me. I'm
grateful to be back to my old self. I can go anywhere and eat anything. For all those
people who suffer from sever Crohn's there is answers and procedures that can cure your
misery and restore that spring back into your step. Just don't give up.
From: Sara
I am 16 years old and was diagnosed with Crohn's almost 3 years ago. I just wanted to tell you that your web site is great, and I hope that you get feeling better soon.
From: James
Firstly, get well soon Webmaster, and remember tomorrow is one day nearer to remission.
My name is James, and I have detailed below my magical mystery Crohn's tour for all to read. My story is different from most in some aspects as you will see. If anyone, particularly those in the UK, would like to e-mail me then I will happily answer their questions.
February 1994 - second semester of my first year at University (19 years old). I started to get slight stomach cramps and was going to the toilet several times a day. I went to see my family doctor who told me that it was my own fault for eating poorly at University and drinking too much alcohol. I didn't really believe this was the case as I am a good cook and eat sensibly, however I took his advice and avoided alcohol and junk food.
Nothing changed, if anything it got worse over the next three months.
May 1994 - my first year exams at University and I was feeling like hell.
I went back to the doctor who gave me something to reduce the acid in my stomach(??) and said that he would make an appointment to see a specialist.
I saw a specialist who booked some tests for me (barium meal etc). I went for the tests and at the end of June I was diagnosed as having Crohn's. Was prescribed Pentasa for my sins and Codeine Phosphate for my diarrhea. I had my first taste of Prednisone, and took 40mg for 3 months.
Here I have some good news for those of you that may be facing steroids for the first time; I did not gain weight, nor did my face swell up like a chipmunk. I had no side effects whatsoever, and have not had in the other times since.
September 1994 - By now I had seriously "fallen out" with the Pentasa, the stuff was making my bowels really angry. I stopped taking it and a few weeks later my Crohn's disease stopped causing my much more than a few extra minutes in the toilet every day. This situation lasted for about four months.
February 1995 - The Crohn's was quite uncomfortable by then and I had mouth ulcers etc.
October 1995 - Got really bad food poisoning, "campolybacteria", that put me in hospital for four days. After that the Crohn's disease became worse than ever. I developed a wonderful fissure that alternated between oozing green puss and bleeding enough for me to wonder if I was gonna need a transfusion. I had to take a lot of time off work because I could not sit down properly. I had tried to get on with my life but at that time I was working for Fujitsu computers as part of my degree and my job was a Logistics Manager so I had to drive 1000 miles + a week; this was impossible. I remember trying one day to drive back to London where I lived, from Glasgow which is over 400 miles. By the time I got about 100 miles away from home my painkillers had worn off and I had no more with me.
I drove those last 100 miles with one butt cheek raised off the seat; changing gear was almost impossible. Another course of
Prednisone. The fissure eventually died down with some antibiotics.
March 1996 - I was regularly taking time off work, just keeping my eyes open for more than 12 hours a day was a major achievement.
October 1996 - The start of the most important 9 months of my life; my final year at university. I had a dull but constant pain in my stomach, perfectly complimented with an almost blinding cramping pain that would occur every few hours and last maybe 10 seconds. I would be in supermarkets at the checkout, looking normal, when all of a sudden I would jump as if shocked by a huge power cable. People would give me very strange looks which I was almost oblivious to, being doubled up in pain at the time. My doctors gave me stronger pain medication but nothing else.
More Prednisone for a change; I stayed on them for six months.
April 1997 - I was trying to study for my finals and complete my 12,000 word dissertation, whilst attempting to get in 14 hours sleep every day.
For those of you out there that are contemplating this; don't, it's not possible. In the end something had to give. I
prioritized things and sleep lost out. I was a walking zombie, my pulse would race, my temperature soar, my head pound and yet I had to study and write my dissertation.
June 1997 - I had survived. I don't know how I managed it, at the end my body was operating on autopilot and my mind had definitely "left the building". How I passed my exams and got a very good degree into the bargain I will never know. However it does go to show that all you out there worrying about how you are going to cope academically, you just will.
I can't be anymore specific than that. Anyway, over the next couple of weeks I got a little better because all I did was sleep (about 15 hours a day) and
socialize in the evening with university friends celebrating out degrees.
July 1997 - I graduated in Financial Services and a lot of pain. I was worse again, and really needed treatment but put it off because I had a graduation ball to go to that weekend. I attended the ball and had, surprisingly, a very good time. Two days later I was in the worst pain of my life, and I felt as if I had flu and food poisoning all at once.
Finally on 8 July I could endure the pain no longer. I went to my local ER to ask for some stronger painkillers. The waiting time to be seen was four hours; as soon as I explained how I felt to the nurse at reception and that I had Crohn's disease I was taken to a cubicle. I was admitted minutes later when they found out that I had a temp. of 103 and a heart rate of 140!!! Over the next few days I was left to rest and given liquid meals; at first they thought I had appendicitis, but that was soon ruled out. Then they thought I had an ulcer so I had a gastroscopy. As a bonus, for some reason I am immune to the effects of the sedative they give prior to the examination (yippee???). The doctor found this out when he looked into my eyes before he began and asked "are you sleepy?". I replied no, so he gave me a bit more. When he asked again and I replied "no", he said that he'd carry on anyway and that I'd be alright. Thanks doc. Anyway, after many tests it was decided that my Crohn's had severely worsened and after three weeks in hospital I was put on Azathioprine. This had three side effects; an unpleasant rash in my hairline and on my face, hands that shook like a 7 on the Richter scale and a series of fits. The rash I wasn't bothered about, the shaky hands were actually funny and a straw became an essential companion but the fits were most unpleasant. They would have stopped the drug but I had said not to surgery as I believed it should only be done as an absolute last option. They persisted with Azathioprine and IV steroids, and eventually the side effects went away.
After being in hospital for five weeks I was let out. I then spent four months being very ill and frustrated, as all my friends were now getting new jobs and earning money.
February 1998 - I was told I could look for a job as I was now okay. I was not in remission but the severity of the flare up was far lessened. I felt much happier.
July 1998 - I have a good job running a PC helpdesk, where I am well respected and enjoy the work. I have been here four months and have not had one day off due to illness, that's not bad going. Lately I feel good five days a week and bad two. This I can live with, however my eyes sting a lot these days. Also, my old friend the fissure is reminding me that he's still there. I have to go to the doc's tonight, so I'll give him a list of my latest problems. Never mind, it could be worse, at least I've got my health (ha-ha.......mmm ???).
My name is Julie and I'm 15 years old. I was diagnosed with Crohn's about two years ago. My first course of treatment was tube feedings. This involved taking no solid foods by mouth for four months. I was given a liquid diet of sandosource. After four months of total bowel rest I went on night feedings. I was also put on the drug Salofaulk and Iron
supplements. I was switched to Pentasa and had and had a bad reaction to
it. I did night feedings for seven months until I was taken to the hospital with a obstruction. I had two feet of small bowel and a small amount of large bowel removed. I did fine for about two months before getting sick again. After a bunch of tests, three more months and three more hospital admissions I was taken back to surgery for another resection. I was home for about two weeks but I kept getting sicker and sicker so I went back to the
hospital. I lost about 15 pounds in two weeks. They tried tube feedings but they wouldn't work so they put me on T.P.N and I was also put
Prednisone and Immuran. That hospital admission lasted for two months. I did well on the combination of the two drugs. my
Prednisone was down to 7.5mg/day and my Immuran was up to 75mg/day. I had a bit of a flare up a few weeks ago and now am back up to 20mg/day. If anyone would like to write me about anything or just to talk, please do.
From: Michael
I haven't been diagnose let but have recently been though the tests the
doctor are sure it is but cant say till the results come back. My name is
Michael DeNight and IM 17, since As long as I can remember I've been going to
my family doctor with stomach pain and everything else. Unsure of what it was
I was given lots of medication but no answer. Finally they decided to send me
to a specialist who has just recently given me that fun test which we all
love. After almost not waking up from it b/c the anaesthesia was to much for
my weight (I'm 5'2 and range from 90-95lbs.)
I'm here today b/c of the prayers from a lot of people who care. My job is
working with kids of many types and problems in fact my G/F is an insulin
depended diabetic and what I do is work with the kids one on one and help them
realize that having a disease and/or disability both mentally and/or
physically is nothing to be ashamed of. Were all different and that's what
makes us SPECIAL but what were able to do is use what we have as a tool b/c we
have what the doctors don't (THE EXPERIENCE AND THE PROBLEM) so to all that
have a problem just remember were all GOD's children made though his eyes and
he see good in all use what you have as a tool not a weapon...........Being
different makes us special and the world from being boring!!
From: Jennifer
I just want to express to the creator of this web site, you have done a great job.!! It is a good site for info, experiences and allows people to see that they are really not alone!! Keep up the GOOD WORK!!!
My sister is in the hospital right now. She has been there for about two weeks, following a year of health problems. Two days ago she was finally diagnosed with Crohn's disease. I'm really worried about her. She has become despondent, cries all the time, shouts at the doctors and nurses, calls everyone names and threatens to put our heads through a skill saw. We are all taking it in stride, but I really would like to know what to do to help her discover that life will go on even though it's going to be different. I have never seen her like this before, and I feel so helpless. Is there anything I can do or say?
I was just diagnosed with Crohn's Disease about a month or so ago. I have a twin sister who also has this disease. She has got hers under control with medication of
Prednisone and Asacol. I was on Asacol but it made it worse so I am taking Pentasa
instead and am also on Prednisone but nothing has helped me so far. I was just wondering if anyone had any information on how to get it under control.
Hi, I'm a mother of a 16 year old son who was diagnosed with Crohn's in Feb. 98, Not only has it been tough for my son but also myself. My son doesn't seem to want to talk to me about things and how he is feeling. I want to understand as much as I can about how he is feeling and what he is experiencing, I have
a lot of questions that the doctors just don't have the answers to. I have learned
a lot form this website although I am new to it. I have wondered what it would be like to talk to parents of a child who has Crohn's. What their experiences were and how they cope with everything. We parents also feel like we are ALONE! I also get very sad thinking of my child having to go through this the rest of his life. Anyway thanks for hearing me out. Is there anyone else out there like me?
From: Sarah
About two years prior to my diagnosis I was a very sick and deathly looking child. I
had gone for two years not telling anyone about the pains the throwing-up blood and the other way around to
anyone. I was about 12 years old and had dropped from 110 to 59 pounds in a period of 1 1/2
years. On January 5th, my Dad's birthday, it was way too much for my Mom and my body to
handle. I kept throwing up anything and everything including just acids from my
stomach. My Mom took me to my pediatrician immediately. He kept me in the back of his office making a nurse stay with
me. I was taking to the hospital. I had tests run on me. They diagnosed me with
Crohn's in about a week. Now it's been two years and I haven't had one flare up
since. I have gained weight since then and look normal once again.
From: Joanne
I wrote to you in January (my daughter's boyfriend has Crohn's) and have been a frequent visitor to your site. I am increasingly more impressed and compliment you on your ongoing dedication!! I've just posted a request on your site and thought I'd also see if you have any information (being the resident expert and all...)
We've recently been told by a well-meaning friend that a physician is conducting clinical trials on a combination of two antibiotics (in large doses). Apparently the trials are going well and the results look very promising. Unfortunately our friend was unable to remember the name of the physician or the names of the
antibiotics.
Do you have any information or can you point me in the right direction? If I locate anything along the way, I'll let you know.
BTW, my daughter's boyfriend is now her fiancé (we're thrilled 'cause he's such an incredible fellow).
From: Joe
First of all, I just want to say that I think your site is
fabulous! It truly is informational and uplifting.
My name is Joe and I'm a 29 year old in Chicago, Illinois. I was
diagnosed with Crohn's back in November of 1993. My symptoms (pain,
nausea) actually came on rather quickly. It was only a two weeks
after my first indication that something was wrong that I started
bleeding and was put in the hospital. To make a long story short, a few
days later I had emergency resection surgery and ended up being there for
three weeks all
together. It was only after the surgery did the doctors tell me that it
was Crohn's .
Since that time I have been very lucky. My symptoms have been slight and
my health has
been pretty good. I was on medication for about a year after the surgery
but have not needed it since.
After reading about what others experienced when it comes to the
medications, I feel a little bit more at
ease now. As we all know, the greatest fear is sometimes not knowing
what awaits you. I know that someday, maybe sooner, maybe later, that
the Crohn's will return and I will have to go on medication again.
I now know a little more about what I'm up against and I'm a little less
afraid
Thanks!
From: Dale
Thanks, your site has taught me a lot about what I should and shouldn't eat
and much much more. Keep
up the good work!
From: Kaleena
Hi there. I'm a 19 female living with Crohn's. I was diagnosed at the age of 15. I
don't know of anyone around here who has the same disease. I just recently moved 900 miles away from home, and finding a doctor or someone to talk to, is very difficult. My boyfriend doesn't even fully understand this disease, and its hard trying to tell him about it. I just
don't know what to do anymore. I feel helpless. My dad has this too, and he almost died cause of it. You seem to have your life in a pretty good state. I need someone to talk to, who also understands what I am going through. Thank you for listening to me.
From: Sherry
This is a great page! Now I don't feel like I am the only one with this stupid disease.
From: Stacey
I think that you should make this page more applicable to all teens with IBD. You have
a lot of Crohn's stuff, which I understand since that is what you have, but I would like to see more Ulcerative Colitis stuff (Diagnosed age 9, Currently 18). The experiences are really helpful though.
My girlfriend's 21. She's had ulcerative colitis for something close to five years now. She was put on steroids, and a pill called Pentacol, and has been taking them since. Well, she's supposed to anyway, but most of the time she doesn't.
She's English. Which means she likes her beer. She also used to smoke profusely, but now she's cut down to four cigarettes a day.
We're at some friends' house, and she's on the couch catching some sleep. They think she's plain tired. She refuses to admit to herself she's got colitis, and it has been one of her best kept secrets.
She hates doctors. They admit her to hospital every time, where she always gets treated rather roughly. So tries hard to hide her pain, and prolongs it all till it's often too late.
I want to help her, but I don't know what to do. She's refuses help because she thinks that by ignoring it, the problem will go away.
I love her, please help me.
My daughter got UC immediately after we vacationed in Mexico. I was just curious if this happened to anyone else. She had a "harmless" parasite called blastocystis hominis.
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