From: LindsayThanks 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. "back@last" 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: LindsayHi, my name is Lindsay. I am 18 years old and am going to start my freshman year in college in exactly a week. I have been battling something for over a year, and even though I go to doctors at one of the top 10 hospitals in the country, they can't seem to agree on a diagnosis. I have all of the symptoms of Crohn's, but none of the doctors seem to care. They all say that they will call back and then forget to. They say "You aren't high on the priority list since you are not bleeding right now." They wait until after I have a flare-up to do all of my tests and then say they don't see anything wrong, especially since I'm feeling a little better. I just want to know of any of you have ever had this kind of experience with the doctors while waiting to get diagnosed. It's really exhausting, and I feel like I can't live a normal life, because I am always so tired. Good luck!
From: JonathanI am 21yrs old and I have had Crohn's since I was about 10yrs old. I have been looking at you site. I just kind of stumbled upon it, but it is very informative. Like I said, I have had this disease for about 11yrs. I have always been told it is hereditary. My grandmother's doctor thinks it is a virus, but can't prove it. I have learned to live with it. Over the years I have taken Prednisone; Asulphadine; Asacol; and now to Pentasa. My doctor has always told me I don't have it that bad. Last upper GI w/ small bowel follow up I had he told me the results were only an inch of my small intestines were infected. Considering the size of your intestines I consider that GREAT. I have my normal flare-ups and stomach pains. Usually around season changes. I just went to the doctor the other day and he put me on 4 Pentasa a day and 20 mg of Prednisone a day for a week. Then we will cut back depending on my condition. But other than the few minor flare-ups I have no problem. The good thing is that I pretty much eat what I want. Some things settle better than others but that is something that I have learned to live with. I hope people read this email and realize how good they may have it compared to us. My best wishes to all those with Crohn's. Hang in there and you will make it.
From: SteveMy name is Steve I am 19 years old and I was diagnosed with Crohn's Disease when
I was 9 years old. I have had several flare ups, from the time I was 9-13, being hospitalized at least 7 times.
I hated the hospital. and when I was almost 15 I started getting some of my worst pain
yet, but because of my stubborn ways I held it all in...I drank a lot to cure the pain...it wasn't until
I was 16-almost 17 I couldn't keep the pain in any longer, I had to get rushed to the hospital, for
emergency surgery. I had 2 resections...in total of 17 inches of my intestines removed..and 7
stricturoplasties "I think that's how u spell it" I spent over a month in the
hospital...and when I was released I had to spend another 6 weeks laying in bed at home.....my surgeon said that mine was the largest operation of this
kind that he has ever done, and he had to leave some of it because it was so badly
diseased. I still feel a lot of severe pain, and I'm almost given up, but if I can give any advise to anybody who is recently
having problems, take care of yourself before it gets too bad, don't lie about how
your feeling, and drink lots of ENSURE it's pretty good for u, especially to gain weight. I was told by my doctor that because of my condition, and how
I take care of myself, I probably won't live to see my 30th birthday, and it's probably to late to fix it......SO PLEASE TAKE CARE OF YOURSELF BEFORE
ITS TOO LATE!!!!!!!!!!
From: EphraimI just wanted to say thanks for the site. Now that I've been diagnosed, and know what I'm dealing with, it's nice to have somewhere to hear what other people have gone thru and the manner with which we're all able to struggle, and at times overcome.
From: JeannieI'm 14 and I've had Crohn's for about three years now. I've had only two big flare ups during this whole time though. The first was when i was diagnosed and I spent about a month in the hospital during that time. I was good for about a year and then last august i started getting sick again but nothing like the first time. I've been battling this flare up for about a year now and things are headed in the right direction. I haven't been bleeding and I don't have canker sores, arthritis (thank you Remicade) and fevers anymore. I did have to go through three months of steroids this summer but things are slowly getting back to normal, I'm less nervous and my cheeks are going down. Right now I'm also a 6mp and it seems to be helping. I also started a new diet and i think its helping and it cant do any harm. I also take marshmallow root, chewable papaya pills, coromega (a really neat fish oil supplement that doesn't give you fish burps) and wild yam. I would really like to hear if you have any suggestions for me to stay in remission and I'm really curious if you felt like you had anxiety when you were on the steroids and how long it took for all the side effects to go away. I love your page because I don't feel alone anymore!
From: ConnieOver the past year I have had extremely bad stomach cramps and couldn't understand why. My mother has ulcerative colitis, we went from doctor to doctor and specialists for at least a year. After all my doctors appointments and a colonoscopy I was diagnosed with Crohn's. Let me tell you this past month has been a really bad struggle for me and my family. We just got back from Panama, Fl. and I was already for school, but instead of going to the first day of school I was admitted into the hospital, this is the beginning of the longest three weeks of my life! I was admitted with stomach cramps and bloody stools, right away CTs were taken, X-Rays, MRIs, Small bowel follow-throughs, etc... After all the tests the doctor told me that the last resort was surgery because my disease had gone so long not diagnosed that I had too much scarred tissue and it was causing more pain and inflammation. I was so... scared the last thing I wanted was surgery. The doctor said they would wait a couple more days and see if the pain and swelling would go down. The night before the operation the surgeon came in to tell me we would be having the surgery at 7:30 am. I was terrified I didn't know what to expect and I didn't want a scar!
That morning I had surgery I didn't actually start to come out of the anesthesia for about 2 days. When I woke up I had a tube in my nose (not comfortable) and a catheter (ew!) I stayed a week to make sure there were no complications and left that Friday. Sunday I went back in because I had a blood clot and it was causing severe pain. I have just gotten out for the second time and I am still recovering from surgery. I miss school and all my friends, three weeks in the hospital isn't the most fun. I know that my Crohn's isn't healed and I have to take care of myself really well so that I don't have to have a second operation but the chances of me having one are 85% yes. I hate having a scar but I will get used to it. I am only 15 years old and have a long time of medication and doctor appointments, but I have a great family who is standing right behind me. I just pray I can be normal again.
From: KeishaI was diagnosed ten months ago, but I've been bleeding for two years now. It is very frustrating at times because most doctors don't know what is wrong with me. Within the two years I've been to three different hospitals and I've been seen by five different doctors, not to mention the mass amount of different medications I've been taking and still taking. I'm to the point where I really don't care any more because nothing seems to work. Most times when I feel pain I just ignore it. Before I visited the specialist every two weeks now I go once a month. I should admit that i am getting somewhere just not fast enough for me. I am 22 yrs of age. I was told that I can have children, but I am scared to because I the different medications I am on. It's really comforting knowing that there are people who care to know what I am feeling and what's really on my mind.
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