The Feedback and Experiences Page: December 1998
Thanks to everyone who has been sending me their experiences and comments about the website. It's been quite a year! 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. "KKringle" 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: Emily
Hi Matt, I just wanted to let you know that your website is so wonderful. I just found it a few days ago and have been there almost ten times already just reading and browsing through. It is so nice to have a forum for those of us suffering from this disease to go to and just sound off about everything, and to remind us that we are not alone. Thank you very much for taking the time to create this wonderful site, and I will definitely send my two friends there that also have Crohn's. Great job!
From: Erin
My name is Erin and I just had a small bowel resection four weeks ago (Oct. 6 '98). So far I am doing very well. I had my Terminal
ileum, and cecum removed. A total of about 40cm. I needed to have it because there was a stricture that had formed right below my appendix. As it turned out, I had a small perforation (hole) in my small intestines and that section had
adhered (attached) itself to my abdomen wall, which is REALLY bad. Just beyond that another stricture (swelling) was starting to form. So I was in pretty bad shape. I was in the
hospital for eight days and had an NG tube down my nose for six days. The doctors tell you that you have to have it in until you pass gas or move your bowels, and it isn't negotiable (at least
that's what they told me). The day before I went home, I was allowed to eat ABSOLUTELY ANYTHING I wanted to. I have been home for three weeks now and I can eat salads, and even popcorn without getting those awful (and
annoying) stomach aches. It has been the best thing I have done. Even though I know it can come back, it at least is getting me of the evil drug
Prednisone without ANY problems! In fact this is my last week of the stuff. My
incision doesn't hurt anymore, but i get tired very fast. Nothing I can't deal with. My suggestion is that if you can't get off the
steroids, then you should seriously consider the surgery!!
From: Michael
For starters, I am not a teenager. ( I hope that's ok :) I was only diagnosed with
Crohn's disease about four months ago. I am a nursing student so I have been exposed to a lot of info related to IBS. Your web sight is by far the best information to help people through the good and bad times. Your sight offers a lot of commonly asked questions. I have an appointment with my
gastrointerologist on the 13th of November. I would like to tell him about your web sight, so he can inform people about it. From my experience my Dr didn't really tell me jack squat about this disease nor anything at all about a diet plan. I have been having a flare up for about six weeks now. Fortunately I only have a mild/severe case of
Crohn's and it is not too bad. When I was reading your web sight "FORBIDDEN FOODS" Now I know why I have had
diarrhea for so long. My diet pretty much consists of all the forbidden foods. Because
of your web sight I now have a better outlook for my bowel movements. I just wanted to say thanks for all the help. I will
definitely be a regular visitor of your site.
From: Manuela
Hi, I am a mom of a 13 year old girl with a (maybe) mild form of Crohn's. Since we are just starting down this road so many of you are also on, please give us a little more help. We have really enjoyed the files so far but we would like more basic info. In my reading so far I have not seen one spot to key into that has the stay aways, what to expects, and ideas for the new comers. One thing I would like to know is, Is there really such a thing as MILD FORM?, and will it get worse with time?? HELP!
From: Donna
I was diagnosed in November 1994. At first the doctors misdiagnosed, telling me I had liver function failure. I was by myself when I got this news and it was a 1 1/2 hr ride home on public transportation. I held in my tears the whole way home. When I finally got there my parents were waiting for me. I broke them the news, trying to act as brave as possible. I started to cry when I told them. My dad told me not to worry, "You know Donna, If your Liver shuts down, we'll buy you a brand new one off the black market".
Of course he was joking, but I instantly knew that I would not be fighting this battle alone (even though sometimes it does feel that way!). When the new tests results came in affirming the Crohn's, I
didn't take it so hard, knowing that someday, with help from friends, family and various support systems, I would come out on top!
I'm looking for info on this disease! I've been having problems for the last 3 years. What first made me think there was a problem was that I started vomiting blood all the time. I thought nothing of the stomach pains, I thought it was normal. Know the pains are worse and I've gone for an upper GI,
Ultrasounds, Oral scope tests, Lactose-tolerence tests, blood tests, etc. I'm wondering
what kind of test do the doctors do to find this disease. On October 27 I'm having an anal scope test done, will the doctors be able to find it that way? I really just want the pain to end or at least know why I get these pains. Please contacted me if you can give me any info!
I have just been diagnosed with this awful thing and I really don't know how to deal with it. This is the first thing in my life that has stopped me from doing anything at all. I don't like being bedridden, and am too stubborn to stay there. I am currently on the drugs Asacol and Prednisone. I have noticed the frequent headaches, but they are nothing compared to the migraines that I used to have. The thing that really gets me are the mood swings and the depression. I have to be doing something at all times or I start to feel bad about this, and I know that is not very productive. I have also noticed that
adrenaline flushed out any drugs that I have in my system at any time so I am forced to calm down. The stress is very hard to deal with at times (bills, brothers, being stationary). At times I work myself into depression just thinking of it. I would like just a bit of cheering if anybody could spare a little. I would like some ideas on how to handle this, I just don't know what to do any longer. Please just write to me, and explain in detail what this thing is doing to me.
From: David
I am a frequent visitor to your site, and would like to thank you for all you have done for Crohn's sufferers. :)
Hello all, my name is Jim and I'm a 31 yr.old firefighter from Louisville, KY. I know I don't technically qualify as a teen, but my experience goes back to then, and this type of page wasn't around for me. I was actually diagnosed with Crohn's in 1989 at the age of 22, but now know I've probably had it since mid-teens. I often suffered agonizing stomach pains, diarrhea, and profuse night sweats as a teen, but never related this to parents or doctors.
All finally came to a head when I first got hired by the Louisville Fire Dept. in Sept. 1989. I was in great shape, though thin, until 3 weeks before I started Drill school, a sort of Fire Dept. "boot camp." In this 3 week period, my appetite decreased, night sweats became intense, and I lost about 15 pounds. I entered drill school and had to take part in strenuous daily activities consisting of running, heavy lifting, and extreme cardio regimens. As others in the class grew stronger, my body became increasingly weaker and sicker. Half way through the allotted 18 week course, I failed a required physical test, extending a 50' , 3 splice ladder. This evolution had haunted me from the beginning, but my body no longer had the strength or energy to accomplish this. With great shame and hurt, I was dismissed from the fire dept. This occurred in November, and by January I knew I was seriously ill. I hadn't recovered from what I thought was results of the course, and all my symptoms were increasingly worse. My family doctor, who had been treating me over a year for what he thought was a peptic ulcer, finally sent me to a specialist. The specialist scoped me in his office and informed me I had Crohn's. He tried several drugs before I finally responded to
Prednisone. Fortunately, I only had good effects with Prednisone, I wish all of you could. By March of that year, I was well enough to try again with the Fire dept. and not only finished, but was the #1 recruit in my class.
In 1996, I started having problems again, so my new doctor and I opted to remove a section of my colon. I wasn't worried, but the post-operative pain was unbelievable. I won't blow smoke up your butt, if you get
operated on, prepare for some serious pain afterwards. All in all though, the operation was worth it. My weight has climbed from 145 to 185 pounds now, and I feel good. I have to get monthly B12 shots to account for the missing colon segment, but, what the hell.
I know I've been 1 of the "lucky" ones. A friend of my in-laws had to have a colostomy done. He's a few years younger than me and the disease has really hit him hard. I pray constantly for a cure to this horrible disease, but til then, can only offer my support. If anyone wants to talk or ask me anything, e-mail me. I'll be happy to talk. Good luck All.
From: Anonymous
I was diagnosed with Crohn's in December of 1996 after going through hideous
pain since late June.
I was immediately put on Asacol following the upper GI and the flex sig. I had
known about Crohn's before because my brother was diagnosed with a mild case.
(To this day, he has only been hospitalized once, and he takes no medication.
I am envious!)
I was on Asacol until the end of January when I was put on Prednisone 30 mg a
day. It helped to reduce my inflammation but, not enough. It hurt to eat
everything and I felt full all of the time, so I just started drinking my
food. In June of 1997, I was hospitalized for surgery. At the time of
admission, I weighed 102 pounds, down from my all-time high of 176. Besides the
Crohn's, I was battling anorexia, which I had gotten as a psychological
reaction. I had resections of my terminal ileum and colon and I had an
ileostomy.
I believe that this was probably one of the best and worst things to happen to
me. Immediately, I felt better. I gained twenty pounds in the hospital and my
friends weren't afraid to touch me anymore. The problem was that I became
image conscious and it was difficult to adjust to life with plastic. My
ileostomy characterized itself with leaks and cuts. It was a big nuisance. I
was determined not to get attached to my ostomy. The hospital's Ostomy Nurse
(who I found out I was related to) told me that many patients give their
ostomy a name. When I heard this, I was determined to be rid of my ostomy as
soon as possible.
In August of 1998, I was hospitalized once again. But it wasn't bad this time.
I had a full ostomy takedown. Plus, I have a series of amazingly cool scars
(Badges of Honor) on my abdomen.
Now it is November and I can't imagine my life without Crohn's. I don't love
it, but I live with it.
Crohn's disease forced me to look, really look, at who I am. Because, deep
down, I realized that there were parts of me that I didn't want to face.
I feel the best that I have in years. And in some weird, twisted way, I owe
that to Crohn's.
From: Sohail
My name is Sohail and I was just recently diagnosed with Crohn's Disease. I lost a lot of weight during that time and I did not go to school often and I was being lax on my school work. But now I am better and gaining weight and getting good grades.
From: Rachel
Hi. this is my first time to visit this site. I am writing a paper on Crohn's and have three friends that have it. This has good info for teens to know, so thanks for sharing!
3 months ago, just before summer, I had my second operation. I was fine until now, but today when I woke up I felt that gnawing feeling in my gut return.
Why can't I just be normal - no pain & no worries.
I want to go to the hospital, but I don't want to talk to a knife happy doctor who wants to cut me open.
Can anyone tell me what meds they use to help with huge flare-ups ??
I don't want to be cut for a third time :(
This is first time that I set in the front of my PC reading and
CRYING. you can not imagine how much your page has impacted me. Let me just say thank you and well done!!
I've had Crohn's Disease for 2 years. I will be so glad if I can help, even to just
one person.
From: Keith Drake
Thank you for your effort putting together this Crohn's for Teens page. I am a medical transcriptionist, also writing a textbook and doing medical research for people with health problems. My landlord's grandchild has Crohn's, and it is very nice to find a web site by and for young people.
I know it is very frustrating to have a problem that the doctors can't fix. I had a mild case of polio in the early 1960s--a week after I got a live polio vaccine. So I have been interested in health for many years because of my own limitations. Yet I feel there is always hope for any condition, and that in addition to medicine we must heal ourselves mentally and spiritually.
My landlord will greatly appreciate this information.
Hello my name is Jennifer, my mom has Crohn's Disease. Well I'm not sure that I have it but when I turned 16 I started to have really bad cramps. I went to the doctors and they put me on birth control. Well now it is worse - I get pains on the sides of my lower abdomen. I have gone to the doctors many times for it and all they basically think I'm imagining the pain. It hurts on both sides. I really
don't think it is Crohn's, do you? I just want to find out so I can minimize the problem. Since the docs can't tell me then I'm on my own. I know
I'm probably just whining but sometimes it is hurts so bad that when ever I walk it will hurt. Thank you very much for listening.
My son Evan has been diagnosed with Crohn's this past September and has responded well to early treatment. However, the doc (Pediatric Gastrointerologist) seems to be limited in nutritional issues. A local health food owner has informed us of a nutritional approach to identify possible allergy's manifesting themselves in the gut.
I'm hopeful someone experienced with this approach will make contact to discuss and share
information.
This is from a father who can't fix this problem and is prayerfully searching for
guidance.
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