Crohn's Disease: Your Stories
(Jan-Mar 2007)
Here are the latest comments and stories from our many visitors. Please feel free to go through them all, and perhaps send in a story of your own:
March 2007
"Hi there, I am the mother of a 16 year old daughter who has been going through a very difficult time. She has been in and out of the hospital five times since the end of December. We have thought back and realized all the flu and virus, food poisions so we thought I do believe has been Crohn's.
The doctors have already removed her gallblader and appendix. They have checked and can only find traces of Crohn's whatever that means. After removing the gallblader the flare up still continued. She has the worst stomach pain I have ever experienced. She will vomit and vomit and vomit until blood comes up. It typically takes about 4 or 5 days to get her calmed down. They have already done Upper Gi endoscopy, colonoscopy, CTscan, Hida which did show her gallblader was not functiong properly, but have not diagnosed her with Crohn's but want say she does not have it.
As a parent I don't know what to do. She is home know, she says the pain is still there where they took her gallblader out but not as bad. She had allergy test done and tested positive to all 143 sking test alot of foods. We go see the allergy doctor again on Monday. I can tell she is getting deppressed and her energy level is droping fast. She is a fighter and is a very determined little girl. She is just know starting to get diahria. She does not have it all the time but has the vomiting when in a flare up. We joke and say she is trying to turn into a mermaid because when she has a flare up she stays in the bathtub, this gives her some relieve.
We always end up at the hosptial for some drugs dilueid for pain and some phenegrin after 3 or 4 nights of night sweats and very bad abdominal pain she will finally get better, we go home stay for a day or two then back to the hospital again.
The doctors say it is in her head. Some think she has an eating disorder but as her mother I know something is wrong with my baby and I just want to help. She has been out of the hospital for two weeks now and say's she hurts a little but sometimes I can see the pain on her face.
Love you all out there just keep fighting and remeber God is the almighty healer and he is there with you...... Love a mother praying waiting and wondering"
Thank you for your letter, and stay strong for yourself and for your daughter.
"I was recently diagnosed with Crohn's and have started Asacol. I haven't had the follow-up appt with my GI Dr yet since my Barium Xray for him to explain it all to me, but I am wondering if there has been anything posted regarding Bloating and inflammation?
My bloat causes almost a pant size expansion daily and extreme discomfort and wondered if there was a way to lessen it? It usually comes along with an all day gurgle in my stomach and wondered if that's experienced by others as well. Again, I am newly diagnosed and haven't had it all explained to me for my situation, but was wondering if there had been postings from others with the same things?Thank you." - Eric, IN
Hi Eric, let us know if you would like us to post your email address so those with similar Crohn's Disease experiences can send you a note. Thank you for your story.
February 2007
"Hi My name is Teri I was just diagnosed about a month ago that I have Crohn's disease. I was having severe abdominal pains on the right side and nausea and vomiting. I lost about 18 lbs.
I went to my family doctor who had an Xray done first and the radiologist told him it looked like the onset of Crohns they then had a G I doctor come in and they did a C T scan, took a stool speciman which he said they had to do to rule out infection, then he did a colonoscopy. I didn't think I was going to get all that junk drank, but I did manage. Now I am taking 4000mg of Pentasa and 40mg of prednisone. My doctor can't believe that I'm taking the prednisone and don't have an appetite.
I've read alot of peoples stories about having the diahrea, but I don't I have more trouble with the constipation which my doctor said that is because mine is in the small intestines not the large. I'm still learning what I can and can't eat. So far I can eat chicken, turkey but red meat kills my stomach, no fried foods, no spicy foods, no caffeine, I've never been lactose intolerant in my life, but now I can't have anything with milk in it. I'm hoping that when we can ever get my flare-up under control maybe eventually I'll be able to eat some of the things I used to. Do any of you have alot of pain? I'm taking 650 mg. percocet to kill it.
I hurt so bad sometimes it even shoots pain down the sciatic nerve in my leg. I am 42 now, but when I read alot about the symptoms and think about the problems I've had with my stomach, I've probably had this as early as my late teens early twenty's, but never went to the doctor for any kind of diagnosis.
I like to read other peoples stories, because sometimes I've found something that they did and I tried it and it helped me so thank you for your stories."
Thank you for your story Teri. There are a lot of archived Crohn's stories on this site for you to read in addition to the new ones here.
"I do not have crohn's but my mum does. She also has non hodjkinsons lymphoma and diabeties. she is the most amazing person in the world and i am so proud of her. she has only 3 foot of bowel left and was on tpn,she has a bag, well the 3rd type of bag due to crohns. she has a transit time of 3 mins and finds it hard to go out.
My dad can not cope with the disease and sleeps in a seperate room and my poor mum gets so down and since moving to another part of the country she has no friends and her dog ben has just died i live 3 hours away and can not help, what do you suggest for my mum. i've told her to move out and start a new back near me and the rest of the family but she insists she is better in the 3 story 6 bedroom house comfortable as my father provides that for her.
My father says he can only be friends with her. he has not had an affair i dont think he would do that but they have NO relationship at all. i asked my dad to go to counceling but he will not go. My mother had a friend who said she could not cope with her illness so she is now afraid to try again incase this happens again.
I wish my mum would move closer to me because she is my best friend and i look after her but like i said she is comfortable and everything is paid for for her and my father is there to talk to. but this is not what she needs she needs to be cared for. if you have crohns and good family support you are lucky and it is so important to stay strong and focusd and not settle for second best.
I am looking at this web page as i an at college currently writing an essay called life with crohns looking at how this differs from one person to the next i am doing a nursing course and hope to make a difference. my mum is visiting me this week and she is gona join me on a shopping trip and lots of fun but not to tiring for her."
Thank you for your story...any suggestions from our visitors?
"My name is Karen, when I was 23 (married with three sons)I started having severe abdominal pain and 15-20 watery bowel movements a day, I lost so much weight everyone thought I was anorexic. My doctor told me the pain was all in my head and I should be greatful that it was not this debilitating disease called "CHROHNS"
Well I carried on for 9 more months before I was finally referred to a GI doctor. He ordered a small bowel series but that (he thought) came back negative. A week later he called me and told me that there was a mistake and that I had Crohns disease, the very thing my first doctor told me to be greatful I DID NOT HAVE.
I am now 45 and have had multiple surgeries, including a permanent colostomy(best thing that they did) I went for 5 straight years in remission. This allowed me and my husband to adopt our beautiful daughter. Unfortunately I suffered a severe flare up last summer, I am currently on prednisone and remicade and doing pretty good. I would like to give hope to young crohns patients, You can fight this disease and you can get married and have families and live a normal life."
Thanks, Karen!
"Hi, my wife and I just found out she was diagnosed with Crohns Disease yesterday. She is 24 years old and I am so nervous for her and would like her to talk to someone for support. She is at work right now and so I am researching. I think if she can find a help group in our area it will greatly help. If there is any suggestions to groups in our sate I would greatly apreciate it. By the way I think your website is a fantastic thing and I hope you keep it up." - Sincerely, Brandin M.
Hi Brandin, thank you for your email. If you'd like, we could post your email address so others can contact you. We have visitors across the US, so someone might have a suggestion for the Ohio area. Let us know. Also, if anyone has any info please send it to us so we can post it. Thanks.
January 2007
"Hi, my name is Kathryn, and I have probably had Crohn's longer than almost any of you out there. I am now 57, started with symptoms at age about 6, was finally diagnosed age 17 in 1967. I have had surgery at age 17,18,21,31 and 45. and now have 4 feet of bowel instead of 28. My first surgery was extremely drastic, and I wasn't expected to live through it as I only weighed just over 3 stones. Yes that is 3 stones, just 42 lbs.
However I pulled through much to their amazement, and am still here to tell the tale, as the saying goes. I had to learn to walk again as I was so emaciated. 10 months later I was back for the second lot of surgery, and the colostomy that I had been given the first time was reversed. There are not many treatments that I haven't been given in the course of my life, and there have been some extremely low points. I have spent most of my life being underweight, having never weighed more than 7stone 4lbs, until I got an underactive thyroid!!
Always remember that there is not a single area of your health or your body that is not affected by your Crohne's. But whatever you do, don't let it ruin your life. Life your life as though you don't have it as far as you possibly can.If there is something that you want to do then go for it...never give in to disease, just make adjustments so that you can deal with the symptoms.I have constant bowel urgency, and my body never stops hurting, but I still hold down a responsible job, look after my husband and my home, do DIY, garden etc etc etc...
The basic message is this. Yes, this disease does mean that everything in your life must revolve around it, but never let it take anything out of your life that you want to be in it.Now and then it will win a battle with you, but in the end it is your positive attitude and refusal to give in that will win the war.
Anyone who wants to email me is welcome. I am on topkat2000 at hotmail.co.uk. Keep your chins up all of you. XXX
Thank you Kathryn, you are truly an inspiration!
"I have so many questions and I want to talk to somebody I am so embarassed about alot things that are happening to me I have been thru colitis then ulcerative colitis and now chrohns diagnosis i dont know what to do and now i thnik my personal parts are connecting i dont know what to do and it is so embarasssing please help me thanks" - Karen
Karen, please let us know if you would like us to share your email address. Perhaps you can speak with some of our visitors.
"Hi, my name is Justin & i've just been diagnosed with Crohns. I'm 21 & scared! From what i'm reading, my WHOLE life is going to change. I've been treated for the past 8 years for ulcers & this last trip to the ER room (after going just 6 days before & loosing 17 lbs in those 6 days) lead me to having a foot of small intestines taken out, my appendix and an abcess that was 9" across taken out. So much for a family doctor having a CLUE as to what i really had. While in the hospital, after the diagnosis & surgery with pain WRECKING my whole being, I WAS SCARED TO DEATH!
No one in my family has ever been diagnosed with anything like this. Of course, my first thought was cancer then came the TRUTH!! It was better than cancer, or so we all thought until we really started finding out all the life changes that had to be made. I'm so glad we found this site & there are other people dealing with what i'm going through, now i realize i'm not alone, THANK GOD!
Don't get me wrong, I wouldn't wish this on anyone but it's good to know there ae other people dealing with what i'm going through. Soooo, anyone who has encouraging words, I want to hear you. God Bless all of you!"
Thank you for your letter, Justin. I'm glad you are finding this site helpful, and wish you the best.
"Hi,my name is Ann,i am 32 yrs old and was first treated for crohn's in 1999.Since then i have been on serval medications and is presently now taking prednisone.I am just recently recovering from a flare-up,having to use the washroom about 40 times a day.Being a mom of two kids and attending school with this diease surly isn`t easy,but being positive gets me threw it all.
I have an eye diease which is from crohen`s and do take drops for them five times a day,have had lazer survey done 8 times to reduce perssure and just keeping my fingers crossed that another flare-up in the eyes doesn`t happen any time soon.This has affected my vision and can`t drive at night or see a board in school to write notes.Some times i feel so scared of the unknow,thinking of what this can be doing to my body.
I thank God that i have a wonderful doctor and a loving family who shows support. Thank-you for listening and letting me get my story to you." - Ann
Thank you, Ann.
"I would like information about this disease. I've had it for 29 yrs.I would like to know if there's vitamins out there without causing diarea.I actually heard about you on tv." - Linda
If anyone has any suggestions for Linda, please send them in!
"I am 23 years old and had to drop out of college and persue another career choice, it took two years of bad flare ups and I'm finally diagnosed but I am too tired and sick to work and I have no idea what to do about money, who can I turn to, I'm not a student now so I am not under my parent's benefits and my meds, like everyones cost sooo much, are dietitions and therapy covered?" - Christine
There are a number of resources on this site, as well as references to sites that can help.
As always, thank you for sending your letters. They are very helpful to many people.
If you would like to read more recent letters, follow this link to our 2006 Crohns Disease stories.