Feedback and Experiences: October 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. "MG_MB" 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!
Hi there!
Wow, really nice page! I'm sure you hear this all the time, but just reading what other people my age who have Crohn's have to say makes me feel so much less lonely. Most of the other pages feel cold & scientific. My grandma was the only person I ever knew who had Crohn's, and she died before I even knew that I had it.
I was diagnosed with Crohn's Disease about 2 years ago. I never really looked for info on it, I just listened to what the doctor told me and that was about it. And then I was assigned a Biology paper last week, topic of my choice. What a great excuse to find out more about Crohn's, huh? :)
Anyways, the real reason why I'm writing to you is because I have a question...have you ever heard of anyone getting bumps on their legs/shins right before a flare up? I didn't see anything like this listed on any of the pages I've looked at. Maybe I just didn't look good enough. :) But this happens to me all the time.
That's how we discovered my Crohn's in the beginning. They hurt when I touch them, and
Prednisone makes then go away pretty quickly... Oh and I think I must be in the 0.00001% of people that haven't had any real problems with
Prednisone...don't know why, but I sure hope it stays that way!
Well, its way too late right now, I've gotta go, but keep up the good work with your page! And please answer me...I'm curious if anyone else gets bumps on their legs like I do...
From: Peter
Hi, I am a 23 year old Ileostomist (Of four years), and a Final Year Degree Student at Sheffield, England.
The problem is that I suffer from an extreme form of Oral Chrohns. This current flare up has lasted for approximately 1.5 years now ! When I have a flare up, my mouth explodes in pain from the mouth ulcers, where I am
required to take Solpadol painkillers, or if that doesn`t work : Meptid.
Dr. Riley at Northern Geberan Hospital has no experience with this, and is at a loss at what to do. He has tried putting me on a full Polymeric diet, which worked, until I went back onto normal food. I have had
Crohn's now for eleven years, and this is the worse that it has ever been. My medication is currently :
Asaphioprine - 125 mg.
Prednisolone - 9 mg.
Omepraol - 20 mg.
Corsodyl Mouthwash - Twice a day
Corlan Oral Steroids - 10 mgs. (Although pretty useless)
Solpadein - As required
Solpadol - As required
Meptid - as required, but avoided due to alergic reactions (Sickness/vomiting/headaches)
The pain is so bad, that I end up being able to do nothing, except curl up in a ball, in a SILENT room, and hold a hot water bottle to my left hand side until the pain goes away.
I am desperately seeking advice on this matter, as it is screwing up my life again.
Can anyone please help me with what to do for these painful red skin spots
I am getting around my ankles? They hurt so bad ... sometimes it is even hard
to walk ... and hurt in the arch of my foot ... my doctor says that they
shouldn't be painful ... but then I am the one with Crohn's and I know that
they are painful!!!
They come and go and he says just take Advil for the pain for now ... but then
that just kills my stomach more!!! I also have stiffness and pain in my back
all over... and I have just started having these little sometimes red and
sometimes just darker looking skin dots almost looks like a wring worm on my
calves and ribs and around my hair line on my face and forehead .... I know
I've been under alot of stress at work and at school and I thought maybe that
these might be caused from that???
I just found out in April of '98 that I have Crohn's and I am still finding
out lots of new things about this ugly disease .... I have already had to have
surgery for a fissure/ fistula back in May ... I am really having a lot of bad
bad days lately and am looking for any and all help I can get of what the heck
to do!!! Thank you so much for anything that you might know or what I might
can do to help these problems. Have a nice day and I hope and pray that we all feel much better
soon !!! :-)
Como ya he dicho antes, tengo 26 años, y hace 8 me diagnosticaron la enfermedad de Crohn. La verdad es que no me puedo quejar de la evolución de la enfermedad, pero ahora mismo estoy bastante jodido, ya que estoy inmerso de lleno en una nueva oclusión intestinal; la decimoquinta o decimosexta, debe ser. Y, quizás para consolarme, o para distraerme, no se me ocurre otra cosa mejor que estrenar mi suscripción a Internet buscando algo sobre esta puta enfermedad (perdonad mi vocabulario, bastante soez, pero aparte de tener mala lengua, estoy cabreado con este puto dolor intestinal).
Por cierto, que no lo he dicho antes, me llamo Manolo, y quizás en próximas entregas os cuente mi personal experiencia sobre la enfermedad, "disease", que por lo visto así se dice en inglés -ahora me entero-. Claro, que lo contaría si a alguien le interesa. Por último, os dejo mi dirección de ¿correo electrónico se dice?, para ver si os apetece ser los primeros en mandarme un e-mail.
(For this of us who can't read Spanish, I ran this letter through a translator program --Webmaster)
I am 26 years old, and at age 8 they diagnosed me with Crohn's. The truth is that I cannot complain about the disease, but right now enough I am "jodido", since I am immersed completely in a new treatment. And to console, (or perhaps to distract to me), nothing better has happened to me than to use the Internet to find something on this disease. By the way, that I have not said it before, I am called Manolo, and perhaps in my next message I'll talk about my personal experiences with the disease. Finally, I want to receive e-mail from others with Crohn's.
From: Mikey
I used to be a happy (I'd like to think cute) guy. I just had my 3 operation in 2 years, when I see my stomach I feel ugly.
This summer I didn't even go to the beach. Crohn's has not only stole my freedom to eat but it also stole my self-esteem. I am always depressed. Day by day I wonder if I am going to end up in the hospital.
When I saw your bonus to having Crohn's. I was pissed. What good could come to something so painful and long term. I wasn't impressed, I was pissed.
One day mom wanted me to look up some kind of med, so I came here. It was on a chat
night. so I said what the hell. anyway I met someone in my own city same age and problem. They helped me
through so much. and I guess I just want to say that I am so thankful that
you put the time and the effort into a page like this. I just wanted to say thanks, I am no longer depressed about my Crohn's, I feel better about myself, AND I KNOW THAT I'M NO LONGER ALONE.. Thank you so so so much your page - sorta gave me a new lease on life with Crohn's. :) Thank you!
Hi, I think that is is an incredible page. I'm sure you put a lot of work into it. I was wondering if you could help me out. The thing is, I do not have Crohn's myself, but have a friend who
does. I have just entered high school, and even though we only met about two months ago, we are already good friends. I know he has
Crohn's because he told me, but it is so awkward when the topic comes up. I have no idea what to say. I don't know if he would be
offended if I asked him a question about it or anything like that. Also, a few days ago, we had a test, and we were all really nervous because it was like ten pages long, and we sat together during the test, I saw him many times holding his stomach, I could tell he was not feeling well, and i felt so bad for him, but I did not say anything, because I was not sure if he would rather be left alone. I did not know if he would be mad that I noticed, and even though I just cared, I was not sure what he would think. I know you are not him so you don't know for sure, but I was wondering if you could write back to me and tell me what you think I should say/do. Is there anything that anyone has ever done for you that was really special? Is there a
particular thing that someone said that made you feel really good?
From: Christina
I have had CD for a little over 6 years now. My experience is quite an interesting one. It started when I was first diagnosed with CD. Of course I wasn't happy when I was diagnosed and I was only 9 years old at the time. I was and still am a stubborn little brat and I refused to swallow
pills. This proved to be a huge problem for me, luckily for me I over came that problem and now I can swallow many pills at one time. My whole story is about when I was first
diagnosed. At the time I was on my favorite and yours : Prednisone! Taking liquid Prednisone is one of the most disgusting things that I can think of. The taste of it is
unexplainable; its horrible. One morning I was rushing around to go out and it would always take me a long time to take my meds because of the taste; also I hated it when other people would watch me so I would make everyone leave the room. Being young and extremely stupid I thought I could get out of it by not that disgusting clear liquid. I poured it into my cup of water when no one was there to watch. I had kept this going for about 2 months and my condition was getting worse. The whole idea of having a disease and having to care of more that just doing my 4th grade math homework was very overwhelming to me. I wasn't ready for this responsibility. Even though I knew I was getting worse that didn't make me want to start taking my medicine. I
don't even know if I even realized that not taking my meds was causing me this pain. I continued to neglect my responsibilities into the summer when I took my family vacation.
That vacation was almost ruined because of me and I didn't know it at the time but no one could really enjoy themselves because they had make sure I
wasn't vomiting somewhere. After a two months of pain my mom was becoming suspicious of my habits. Her suspicions were correct. I'm grateful that she did. I could have died. I was so stupid. My mom and doctor confronted my on my
irresponsible actions and explained to me what could've happened. It really scared me. Not to long after that I started taking pills. The point of me writing this is not to say that pills are better than liquids, but it is to say that even though no one asks to be
diagnosed with CD if you have it then you have to take responsibility for yourself and realize that its not easy but its what you have to do. I had to learn my lesson the hard the and believe me I will never do something that stupid again and I hope that no one else does either.
I'm 17 now and I have had an operation and I'm doing pretty good :)
From: Mike
Glad to have found your web page. I have had Crohn's now for about 10 years. I have had 9+ surgeries, most of my large intestine removed, a
temporary illiostomy and then the reversal of it, all the problems associated with
Prednisone including the Prednisone psychosis, hip replacement due to aseptic necrosis (caused by the
Prednisone) etc etc etc.
What I wanted to share was really 2 things. The 1st is that I too have experienced the October/November
flare-up period. I have had mild to severe flare-ups every year at this time since I was diagnosed. I have always attributed this to the stress of the holidays, as well as the change in weather. I have recently discussed this with my doctor, and he told me that this is probably due to an INCREASE in immune system activity. Everyone would thing it was a lowering of the immune system, but since
Crohn's is an auto-immune disease, it occurs when the immune system is active. This would happen when the body is trying to fight off a cold or the flu for example. I have been getting the flu shot every year now for about 4 years, and have found that this has helped some.
The other thing I wanted to share with everyone is something that should be told to all of us at the time we are diagnosed. We should all seek counseling of some sort. Since
Crohn's is a chronic disease, and since it effects both our bodies and minds (depression), I
truly believe that we should all try some sort of counseling. I have found that the illness causes definite action/response type cycle. You get sick with a flare up, then you get depressed because you are sick, then you get sicker because you are
experiencing stress from the depression, then you get more depressed and that makes you angry and on and on.
I started going to a shrink, and was told that everyone with a chronic illnesses
experiences some type of depression to a certain degree. For some of us it is worse than for others, but I was put on an anti-depressant (Prozac) and it has made a remarkable difference in both my attitude, frame of mind and interaction with other people. When you're feeling better mentally, you feel better physically, and when you feel better both mentally and physically, you deal with people better and you get less depressed and less stressed and less angry. I think it is very common for a lot of us to be experiencing anger without really being aware of it.
Anyway, thanks for letting me share with you and thanks for the website.
I am 25 years old and recently diagnosed with IBS. My older
sister has CD...so I had a brief insight into what I might
expect (diet-wise).
My trouble is that they now have me on this lousy
diet....and I can't eat POPCORN (AAARRRGH!!!). What do you
suggest for us junk food junkies?
The worst of it is that I am PMS like nobody's business,
and right now I want nothing more than a grilled cheese
sandwich, a giant chocolate chip cookie, and a big ole glass
of milk to wash it all down. What are you doing to help
with cravings for "comfort food"...I feel like a big baby.
My 11 yr. old son was diagnosed summer 97 with Crohn's. He's on his third
round of Prednisone and has been on Asacol for 1 yr. His original dr. moved
out of state. New dr. wants to add 6mp medication and I'm pretty scared about
that one. Would like to hear good and bad experiences with this drug.
Thanks!
I'm 19. I'm from Queens New York but I go to college at SUNY (state university New York) Oneonta. (It's between Binghamton and Albany) in upstate NY. I keep really busy at school. I'm president of my dorm and I have a bunch of friends. I don't party all that often but every now and then is cool. I've been kind of bummed out with this whole CD thing. I don't handle not being in control well. You know what I mean? No one has any control over what's going on and I hate it. I don't know how to deal with a lot of the stuff that's going on and I'm really far from home so I have to go through it basically by myself. I was diagnosed in January so I don't know if I'm feeling good or bad. It's all really new. I never took the time to really realize what I have, and now I am and I really don't like it. I'm also a horrible patient and I can't deal. Maybe you could help me out. Tell me I'm not being retarded. Thanks.
From: Keri
This page is great; it helps me a ton!
Just want to start out by saying your page is great, the info and experiences I've gotten Have helped quit a bit in my search for more CD knowledge. Anyway, if you'd like you can post the following on the experiences page, and Include my e-mail as well (Fiater2@aol.com):
I was diagnosed with CD in June of 98, so I'm very new to the IBD world. I'm 24, maybe a bit old for the page, but it is one of the best around.
Reading all the stories and the experiences has sometimes spooked me, but others times gave me a few grins. Anyway, I thought
sharing here might help others. initially, I was sick -real sick- lost 20 lbs ( I only weighed 145 to start with) and much time from work. After tests and such, I was put on Prednisone (this is weird, but I had ZERO side effects from it, guess I was lucky) Asacol and Metronidozole (good thing most of my friends don't know its yeast infection medicine, I'd be ribbed into the ground for that). I got better and am now totally back to normal. I'm actually up to 160, even
getting a little chunk here and there. I'm writing because I hear a lot of awful
stories here, and hope my recovery can give others good hope that everything eventually turns OK. I'm only
hitting' the white horse once a day now! I have no pain, smoke like a chimney (I know, ti's very bad, and I'm
starting the Zyban thing soon, but it's INCREDIBLY hard to quit on your own, plus with worries of work and school and all), and eat, as my total diet, just about everything on the Forbidden Foods list in large quantities. I thought I was the most unlucky person for
getting CD, but now I feel extremely lucky I have no symptoms (except the occasional gurgle from my gut, which can be a little unnerving to others in my extremely quiet Calcuslus class). I sincerely feel for those who get
surgery and are in bad shape. If anyone wants to write and just blabber CD with me, It'd be cool.
From: Fabio
I am Italian, I am 51 years old. I was 40 when my doctor said, "You have Crohn's Disease" and gave me Prednisone. I felt better soon. I had lost
weight, and was pale; a skeleton more than a human body .Now I take 10mg of Prednisone every day and have a normal life. But I don't have problems of acne, of course!!! Best wishes to all.
I am the mother of a 9 year old very active little boy with a five year
old ileostomy!
A bum on the tum! We have learned through many trials and errors and
are willing to chat with others needing assistance.... at present, we
have a very good flanging system and get a weeks wear.... also, we have
had alot of experience with diet and dealing with restrictions due to
the ostomy, allergies and the 'kid fussy thing!'
I'm 14 years old and have just been diagnose with ulcerative colitis. My parents aren't telling me much so I went to search on my own. I overheard them talking about me going to Minnesota for an ilieoanal anastomosis. Can someone tell me anything about this? Is it dangerous? How long does it take to recover?
Hi,
I'm from London, UK, and I am so pleased to have found your page, although I am 20 and my boyfriend (who suffers from Crohn's) is 24, it gave me so much information about others experiences and how they coped, I feel that I could cope with any remission which he may go through.
Until last year I had never heard of Crohn's and now I am planning to do my final year of degree research project on CD and UC, and the social problems sufferers may face.
Congrats on a brilliant page.
Hi! My name is Helen and I am a 17 years old Chinese girl living in Hong
Kong. I kept having on and off fever and abdominal pain (not severe) for a
month. I have the same symptoms a year ago but it got better by having antibiotics. The doctors said my symptoms look like
Crohn's disease but
they are not quite sure. I have lost a lot of weight as well. It's a very irritating
experience but they can't find out the cause. By the way, your web site is great! I am actually studying in the U.K. but my parent live in Hong Kong. But as I am having on and off fever, I did not return to school on time and I am really about the work I missed. It's my final year in high school before university so it's really critical. Unfortunately, Crohn's Disease is virtually unknown in Hong Kong so I could only get information on the net. Your page is excellent and it makes me
realize that I am not alone. I also wish if possible you could make it known to the others that I wish to receive more mail from people who don't mind sharing their experience with me. No nonsense mail please!
From: Ginni
Hi, I just wanted to thank you for starting such an awesome website. I'm 18 and have had Crohn's 6 years. It's not something that I can talk about normally because no one really seems to know what I'm talking about. I hate that I have to be so different because of it, but seeing and realizing that I'm not alone does wonders for me.
Again, thanks!
Okay, I've had Crohn's since 6/97, and it's been kinda under control. Now, I'm having lots of stomach pains so bad that I can barely walk. I take my medicine
(Asacol 2 3x a day), right on time everyday. I even take extra medicine that I'm suppose to take when a flare up occurs. I've been on this since I was diagnosed, so do you think it could stop working, like my body is immune to it or something? I've heard of that happening, but I don't know what's going on. This has been going on for about 2 wks. now, and I'm about to wear myself out!!! Thanks for any advice
From: Rose
I had symptoms my whole life. The joint pain, the never ending flu, the misery. I also did not grow like the other kids. My doctors
tried to find out what was wrong, and when they didn't they told me it was all in my head. Finally I had to have two
surgeries on my ovaries and lucky for me I had a wonderful GYN who was very knowledgeable
on Crohn's. 2 month's after they thought they found it I had my very first HUGE attack that almost killed me. Since they new what to look for they did a Colonoscopy and there it was in all it's painful glory. Hardly anyone believes me when I tell them that a GYN found and diagnosed my Crohn's. It turns out his best friend is one of the leading Crohn's Doctors in the USA.
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