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. "BizeeGuy" 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!
I like this place a lot. I hope to find the time to return often, and get more insight into CD. I was reading "dealing with depression" by Jen Brown, and thought that I would share some advice. I first need to set up the story. At nineteen years old, I decided to serve my God, and go on a mission. I filled out the necessary papers, and got called to go to the Puerto Rico San Juan Mission for the Church of Jesus Christ of Latter-Day Saints ( Mormon ). The call was for 24 months of time. I started my journey in November of 1997, a healthy young man. I spent 2 months learning how to teach the restored Gospel of Jesus Christ, and Spanish. I got to the island on Jan 12 1998. We have the opportunity to spend a few months in one place, called an area, and then move to a new on. I spent 3 months in my first area, and 4 months in my second. One week after arriving in my 3rd area I got sick. Most people thought that it was a tropical disease called Dengue. I got better after a week of fatigue, and went back to work. As missionaries we have a companion, another Elder that we are with all of the time. A week later I broke the news to my Companion that I might be sick. I had diarrhea pretty badly, and wasn't feeling well. Being in a foreign country with weird food, we thought that it was something that I ate. We tried to change the diet. No milk, no bread, no rice, etc. Nothing worked. The pain got so bad that I finally went to a doctor a week and a half later. He said that I might have Irritable Bowel Syndrome or Colitis. One week later he sent me to a specialist. He diagnosed me as having Colitis after doing a scope on me. Three days after that I was on a plane headed home. I didn't write to my parents at all through the whole thing, so the first time that they heard that I was sick was the night before I was to leave. I left the island of Puerto Rico on Oct. 15, 1998. Less that one year out. I was later re-diagnosed, by a doctor here, that I have CD.
This is a great page. I have never been one to share much about my Crohn's, but this page has opened my eyes in a lot of ways.
I thank this web site because it makes me feel not so scared about the Crohn's Disease. My experience with IBD sounds alike to some other people. I got Crohn's when I was the age of 12. It started with a sore ankle in baseball of summer 1996. We went to my doctor in Twin Falls ,ID . He gave me a air cast but it did not go away so he sent me to Salt Lake ,UT. It was about Christmas time so I got stiff . After the year he told me I had arthritis and after the summer of 1997 I became a little bit stiffer and I just kept seeing my doctor. And then came summer of "98 it was my first year of Babe Ruth baseball, and my friends 15th birthday so she was going to have a quinceanera. And I had already been in the hospital twice. It was a week before the big dance and she was scared because my date was going to be by herself. But Told her she could count on me to be there ,and the two weeks I was in the hospital is when I found out I had Crohn's . And at the dance practices I felt like I was going to die dancing. And after the party a week later I was in the hospital in Twin Falls ,ID. I had this x-girlfriend she was really close to me she spent time with me in the hospital. It was the worst time of my life, I felt all alone but my mama was always there day and night. I got really depressed . School came and I was in the hospital so I missed a lot of school and then I got out and still could not walk . I had no wheelchair and my school had a up and downstairs they had no way to get me to my classes . I took home school for about 2 weeks left of the 1st trimester, and I looked chubby because of the Prednisone and everyone was surprised to see me.
When I was 13 (in 1993) I was diagnosed with Crohn's. I lost my appetite and consequently 30 lbs in two months. My parents thought I was anorexic. I lost all of my energy. I slept most of my life away. However, I have no memory of pain or anything else that obviously must have been going on at that time. My mother forced me to drink Ensure which I hated. Our family was torn apart...my siblings thought I was doing it for attention, my parents thought I was doing it on purpose, and I didn't think anything was wrong. Finally, I started complaining of stomach trouble and my mom took me to the doctor. I had been throwing up frequently and that scared her. After some glorious test involving barium and unmentionable poking and prodding, I obtained an appointment with a gastrointestinal specialist who told me I had Crohn's Disease. I have never had it really bad (No operations up till this point) But I have never gotten it under control, either. I just got off Prednisone a few weeks ago and already my symptoms are reappearing. I am now 19 years old...I just want to have a normal life, and I really don't know how. Sometimes I just wish I could have surgery and get it over with (i know it wont cure it but it would help for awhile) I am a dancer and I cannot dance en pointe because of the swelling due to Prednisone. I was so severely anemic that I just finished a 14 session IV iron transfusion. It helped for awhile but the effects are already wearing off. I am just sick of being sick. It is strangely comforting to read that other people go through the same stuff that I do. I have always been in denial about my Crohn's and maybe that is part of my problem, but now that I have found this page maybe I wont deny it as much. I guess just talking about it with someone who understands helps. Well, I have to go suffer through dinner now.
My name is Britany Martin and I'm from Vancouver Washington, originally from Portland Oregon... I was diagnosed with Ulcerative Colitis about 6 years ago. It started with the stomach pains, vomiting, loss of appetite, etc... at first the doctors felt distressed, they could diagnose what was exactly wrong with me, they followed leads concerning E. Coli (an outbreak of E. Coli was going on at the time) but than soon realized, that wasn't the case. My mother became very frustrated with doctors, they couldn't do anything to help me, and my condition was worsening. while i was at my doctors office one afternoon, my mother over heard my doctor speaking to another doctor, explaining to him that " they (my mom and grandma) were just tired of taking care of me. Needless to say she was very upset and discouraged. It was a very long road with many trips in and out of the hospital and numerous clinic visits, and a lot of "dead ends." I was first put on Prednisone and sulfa, which made me "puffy" it was a very difficult thing for me to cope with at age 10. Try explaining a hereditary disease to a bunch of elementary school children. After about 6-8 months of hell, it finally went into remission. my life got better and better, I've become what people call a "beautiful girl" up until about a year ago, I was fine. at about mid-way through 1998, I noticed symptoms, but scared of what doctors would say, and being put back on Prednisone, and losing my "looks"... I didn't tell anyone. except for when I got together about 7 months ago with my boyfriend, Jake. After listening to me moan in pain day after day for 7 months, he finally approached me and said "If you don't tell someone, I will" my first reaction was anger, than hurt and betrayal. finally i see now that he was/is just trying to take care of me, and see that I'm okay. I am now on Sulfa and Purenthinol. awaiting my next appointment when i will schedule my colonoscopy, to see exactly how far along it is now.
Hi my name is Robin I know I'm a teenager but you have the best Crohn's Disease page around. I'm 22 will be 23 in 2 days. I was diagnosed with Crohn's yesterday March 4 1999 after a upper and lower GI. It only took them 6 months to figure out where my pain was coming from. Even had my appendix removed for no reason. What a birthday present but I'm relieved to know it was not all in my head. I will have to go into surgery soon but your page has helped me understand Crohn's better and took away some of my fears. Thank you.
This page is Awesome. It is nice to know that there are people my age who have the same problems as me. This page helps people deal with Crohn's. I've had Crohn's for about 4 years and I have NEVER had anyone to talk about my problems and now that I found this page I can email people who have the same problems and help me and I can try to help them too the best I can. I would love it if someone would email me and talk with me about this. Thank you for making this page it helps A LOT of People.
Hi, I have Crohn's. My name is Meg, I am 14 (at the time when I'm writing this, 2/28/99) and I live in the U.S.A. I was diagnosed w/ Crohn's just about 6 months ago, about a month after my first surgery. I now have a 2nd belly button from where the doctors cut me open, LOL. I don't want to bore you with a long story, but my mom has found some herbals that REALLY have helped me (you may want to go doubles on the pills, depending on your intestinal absorption): Vitamins A, B, C, and E. Ginger for nausea (if you get nausea when you eat, try just sniffing some powder, IT REALLY WORKS GREAT!), garlic for your immune system, zinc for normalization of the immune system, magnesium, chewable Tums for calcium, Psylium husks (some of you may not want this because of the fiber, but for me it helps to normalize my daily stool, so that I don't have diarrhea or constipation), and last but definitely not least, I take an acidophilus (or another name is: lactobacillus) w/ every meal, and I quit have bloody stools, cramps, and diarrhea. When I'm starting a cold, my mom stuffs goldenseal, feverfew, Echinacea, and zinc lozenges down me. One last thing, for all of you who have trouble sleeping, like me, here is another one of my mom's "potions" :) : Valerin, 6 capsules, Melatonin, a 3 3 mg tablets, and one Tyrosine capsule. I hope all of this works for you guys (and girls *S*) get better, and be sure and shock people w/ your stories!
Hi, my name is Tracy and this is the first time I've actually sat down and looked for any information at all regarding the disease that has been affecting my life for the past 5 years. I was actually diagnosed with Crohn's almost three years ago, the summer after I graduated high school, but I have been suffering with it since probably my sophomore year or sooner. I hadn't actually ever talked to anyone who shared my disease, but in November of 1997 I lost two feet of intestine during emergency surgery that marked the end of a terrible four months or so of "flare up," and the beginning of a very long and hard recovery. I now am in complete remission and the only thing left reminding me of the terrible ordeal is a foot long vertical scar running down the front of my stomach and the memories. I still have to control my disease through diet and medication, sulfasalazine, but other than that I seem to be okay for the time being. The surgery and circumstances surrounding it were very hard. It turned out that I had developed acute paratenitis, which is a very serious infection, in my intestines and that caused tiny holes to form in their lining, allowing air to leak into my stomach. The whole thing was a complete nightmare and most of my months of pain and suffering probably could have been prevented if my doctor at the time wouldn't have insisted that it was just "normal Crohn's stuff," isn't that an oxy moron. I knew that it wasn't normal because I knew how to read the signs and symptoms of my body by then and it was telling me that something was seriously wrong. I lost all faith in doctors and went through some major trust issues after that and if it wasn't for my family, my mom especially, I don't know if I would've survived the illness or the trauma that followed. I am healthy now and back in school, working and exercising....which seems to help a lot. I was just browsing the internet and thought that I would share my story and see if anyone else could relate. Thanks!
I'm sure you know a ton of people with Crohn's by now. I don't. It's good to see someone doing this sort of thing. Like you said, it's hard to talk to people about Crohn's unless they have it. Even though I'm in remission now, (at least it seems that way) reading and talking about this sort of thing brings back a lot of memories. Most of them I would like to forget. But there's one good thing I can say about diseases and sickness like Crohn's - it makes you reevaluate your life. I know that when I look back at myself from the point where I was diagnosed, September '94, I've become a better person. I'm not talking about personality changes-this isn't some facade. Crohn's made me realize that nothing worthwhile in life comes easy. Enduring that pain and maintaining an extremely active life is a battle. I'm now a better worker, a wiser person and so many other things that weren't part of my life before Crohn's. Even though it may sound odd, I'm glad I have the disease.
I'm a Crohn's sufferer who had to have a colostomy at the ripe old age of 16. Even though I am now 44 yrs. old, I remember all the pain and suffering of Crohn's, the "awful" realization that I would have to spend my entire life being "different" because of my disease and colostomy, and the wonderful reality of BEING ALIVE! I would love to talk to anyone about Inflammatory Bowel Disease, ostomies, the depression and anger that goes with all of it, and how I believe you can live life to it's fullest! I want to tell you of being in the music profession and performing in front of thousands of people, and touring the US, in spite of everything! Although I'm far from being a teenager, I was diagnosed with Crohn's Disease at 13, and spent 3 looooong years on special diets, truckloads of pills, and was in and out of the hospital because of complications due directly to CD. Ten days after my 16th birthday, I was faced with this decision: let the doctors perform a colostomy, or die. What a choice! Now, I don't deny having depression, some embarrassing situations, or bitterness for the situation I was in. I had ALL that, and more. But, the colostomy saved my life, and I didn't let it stop me from doing the things I wanted to do. I don't know a lot of so-called healthy people who worked as hard as I did to achieve a singing career which led me to record in Nashville, TN., do opening acts for Mel Tillis, Crystal Gayle, Shelley West, Ronnie McDowell, and Gary Morris, perform in the casinos in Nevada, tour the western United States, and live in Las Vegas for 4 1/2 months. I'm now 44 years old, was married to my late husband for 21 years, am engaged to be married again in 1999, and was "Crohn's-free" without medication until 1998. I'm now on medication since my flare up, and I'll deal with my problems as they come up. I just wanted to let all the TWC's that your life is not over, even though many of us have had times when we think it is. Don't give up or give in, and look toward a brighter future, hopefully, a time when there'll be no more Crohn's Disease. God bless you all in the fight.
I don't remember my exact diagnosis day. I had gone a long time with symptoms but didn't let on for a long time. at first the doctors thought I had E-Coli, but after a colonoscopy, they knew I had Ulcerative Colitis or Crohn's disease. The doctors are still not sure which one I have.
I'm almost 16 years old, and I was just diagnosed with Crohn's on Friday, February 12th. I went to a GI that morning to see why I was having stomachaches so bad I wanted to rip my stomach out of my body. My doctor has been telling me since November to get more sleep and take Tums, and reduce the stress in my life. My mother couldn't believe that the pain could be THAT BAD. But as you know, it was, and it has been hell for the last few months. On Friday I had a sigmoidoscopy (excuse the spelling) and that's when they figured it out. FINALLY. It is terrific to read stories of others that have the same problems as me, and shocking to know that I am really not alone.
I'm 17 and was diagnosed with Crohn's two days ago. I began feeling the effects of this disease about five months ago, mainly cramping, constipation, and rectal bleeding. In December I went to the doctor mainly because of the rectal bleeding and constipation, and I mentioned the bellyaches to him, but neither of us took them very seriously until I had to go back to have my stool checked for blood. By this time I had chronic diarrhea and the cramping was worse. He decided to do a colonoscopy. I burst into tears at the thought, but after talking to others who'd had it done before, and taking into consideration my pain and the agony of not knowing what was wrong with me, I knew it had to be done. So this past Wednesday I had the procedure done. My intestines are a bloody, bumpy mess. I've felt the worse these past two days than I've felt in the five months of my suffering. At first I was glad to know what was wrong, but now I'm depressed and saddened by the thought of having to deal with this for the rest of my life. I've lost weight, I'm anemic, and now they want to scope my stomach to see if it's infected also. I got on the internet to find more information on the disease and ended up here thinking it would be a good place to find some support. I could really use it. So if anyone who understands what I'm going through could e-mail me, I'd really appreciate it. My friends, family, and teachers are great and very supportive, but still they have no idea what I'm going through and it'd be nice to talk to someone who understands. Feeling so alone is almost worse than the pain of the disease.
I just finished reading your story and I thank God that I am not that bad. The new drug Remicade has not reached NZ yet and probably won't for a long time (we're still new to Entocort). I want to thank you for the work you have done on TWC cos it has really helped me. It's good to find out what other people are going through. I have found from the way people describe things that treatments here aren't as extreme as they are in North America and I don't know why. I would have to say that Crohn's isn't a really common disease here (it is common, but not really common) because of our wide variety of ethnicities. There was a study done in NZ that said that people from Pacific Island countries such as Samoa and Tonga don't get Crohn's because of their diet. They eat a lot of starchy foods like the ones that doctors and nutritionists here have suggested are good to eat. At the moment I am on Pentasa, but that could change because I now have to go and see a rheumatologist because my joints have gotten so bad that I can't do gymnastics without pain. I could end up on something a bit stronger so that I don't get so much pain. Anyway that's a bit about me. This won't end up anywhere will it? cos I kinda babbled. Take care.
My name is Dawn. Hi. I am 13 now and was diagnosed with Crohn's Disease when I was 12. It all started when I first had that annoying pain in my stomach which I am sure all of you are familiar with. I had gone to the doctor's office because of the pain and neither them nor my parents knew what the pain was from. After a couple of doctor visits because of the pain, my pediatrician referred me to Dr. Vikram Khoshoo, a gastrointerologist. After taking down my history he then ordered an Upper GI for the next day. I couldn't eat all the next day. I had to get up early and go to the hospital and prepare for the test. They made me drink 2 cups of barium. (Anyone that has had that before knows that 2 cups is enough to turn you away from milk for the rest of your life.) Anyway after they did the test they had an idea that it was Crohn's Disease. They then started me on Pentasa and Prednisone. Then, my GE gave me food restrictions. They were to stay away from high fiber products which ruled out all vegetables. That kind of got to me seeing as how I liked vegetables. I started to have chest pains due to the anxiety of everything that had happened within those few days. I went to the hospital to make sure t was nothing to worry about. My GE also ordered a colonoscopy to confirm that it was Crohn's Disease. I woke up during the colonoscopy and I have to say that it was the most disgusting thing that I have ever been through! (I don't know why anybody would want to have that has their profession!) I started running fever and after being told that it should go away in a couple of days (and it didn't) I was admitted into the hospital. There they did a cat- scan to look for abscesses, and they found none. I was released from the hospital after a stay that consisted of 4 days. My GE sent me home with 2 antibiotics (Cipro and Flagyl) and one month's worth of a prescription for Zantac. I finally stopped Prednisone after being on it for a little over a month. After getting off of the Prednisone, I began hearing rumbling again. He then put me back on Flagyl for two more weeks. I started taking another drug called Immuran which called for periodic blood tests. Two weeks later I stopped taking Flagyl. I began hearing a lot of rumbling, and I started having the pain again. The pediatrician prescribed paregoric, which is a drug used for the relief of pain. It worked wonders! Days later I awoke at 5:30 in the morning to severe pain and nausea. My mom had gone through an appendectomy, and she said that I was experiencing the same thing as she had 7 years ago. The whole day through I had constant vomiting, and the pain never let up. I finally, at about 2:30 PM, was literally asking for an IV to stop the pain and vomiting. She then called my GE who gave the"OK" to admit me. Any other kid would have griped about going into the hospital, but in a way I was relieved because I knew that my GE would find the cause of this terrible pain. But more importantly he would stop the vomiting and severe pain. The whole, bumpy ride there I had vomited. (Keep in mind that I had vomited about 10 times within a nine hour period.) I was so weak from not eating and the vomiting that I could barely walk. After I settled into that far too familiar place, they started an IV and relieved me, almost instantly, of the pain and continuous vomiting. They also gave a drug call Demerol to calm me down and finally let me sleep for a little while. The next day they did a cat-scan to see what this mysterious pain was from. They had pretty much narrowed the diagnosis to either appendicitis or something called Crohn's appendicitis. Regular appendicitis would be cured surgically where as Crohn's appendicitis was cured by antibiotics. They had to do 2 more cat-scans to figure out the right diagnosis. Having done the cat-scans they said that they saw a stone in my appendix and were unsure of what it was. They then told me that they had to do an ultra-sound to help confirm the diagnosis. Having done that they said to go back to your room and rest. When we got up there, my GE called and he, my parents, and my pediatrician decided to go ahead and perform surgery to determine the diagnosis. They said that if they got in and it wasn't regular appendicitis and if the diseased part of my intestine was nearby they would remove it leaving me Crohn's free for the time being. Once again my pediatrician, my parents, and my GE decided on a surgeon. The surgeon came in shortly after and said that he thought that it was regular appendicitis and he wanted to perform an emergency appendectomy as soon as possible. I had to wait 3 long hours before they could actually do the surgery. The anesthesiologist came in and saw how nervous I was and knew that I wanted my parents there when he gave me the drug to put me to sleep. So he agreed to give me something to relax me as soon as we got outside of the operating room. Boy, did that drug work fast! I remember going into the ER and the nurses moved me from my hospital bed to the operating table. Everything after that is kind of fuzzy. The surgeon ended up taking my appendix and approximately 12 inches of my intestine out. The last thing that I remember is waking up in my hospital room with something up my nose. I asked my parents what it was and they said that it was something called an NG tube used to drain my stomach. It went in through my nose all the way to my stomach. It was a big pain in the neck. It hurt when I talked, and I could barely swallow. I wanted it out now and no later. In the mean time they had given me a morphine pump for pain. I was able to press a button every time I felt I needed pain medication. The doctor came in and said that getting the tube out all depended on how much pain medicine I took. Right then and there I handed the pump to my mom and I refused to press it. (It already pumps in a small amount of morphine through my IV. By me pumping it, it gave me a little bit more.) Hours later the doctor came in and gave me some good news. He said that he would take the tube out. Upon doing that I was able to talk more and able to swallow without pain. The next day I began walking around. (I did not do that by choice. It was painful, but I knew that I had to do it. I knew that it would speed up my recovery.) Four days later the doctor came in with even more good news. He said that I could go home that day without any food restrictions. I then got up, got dressed and sat in a wheel chair with my bags packed and ready to hit the road. Now, I am in what is called remission. I hope that it lasts for a long, long time. I am still on Pentasa, but that is to help prevent the Crohn's Disease from coming back.
My name is Philip and I am 12 years old. I was diagnosed with Crohn's about a year ago, and since then I've been on Pred., Flagyl, 6mp, Asacol, and Pentasa which I am still on... none of them had any effect on my inflammation, all they did was give me bad side effects. I got a seizure from Flagyl, anemia from the 6mp, (I don't even want to mention Prednisone), hair loss from Asacol and head frequent head aches from Pentasa... But less then a month ago I had surgery and I feel 100%. Even though there is always the risk of it coming back I still want to enjoy it while it lasts. Don't put your self through the pain anymore!!
My name is Christian. I am sixteen years old. I was diagnosed with Crohn's on January 1, 1997. I had been sick for about a month, and doctors had no idea what was wrong. I had severe pain in my abdomen, that pain killers wouldn't help. I went to the doctor on December 27 where they scheduled a colonoscopy the following Monday. By the time I had gotten home, I had an obstruction of my intestines. I was then placed in the hospital. The following day I had exploratory surgery. I had my gallbladder, appendix, and some small and large intestines removed. A few days later I was diagnosed with Crohn's. So far I haven't had any flare-up's.
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