New Crohn's Disease Stories (2006)
Following are the latest Crohn's Disease stories from our visitors. We appreciate their feedback, and hope these stories are helpful and inspirational to all of you:
November - December 2006
"Can you please help to direct me on how to collect disability for Crohn's disease. I have had crohn's for 20 or more years, 5 surgeries and continue to have greater problems." - Karen
If anyone has experience with this, please email us and let us know how Karen should proceed.
"This kim , from cincinati ohio , i have crohns i found out two years ago , dealing with going to the bath room all the time , dealing being sick all the time ,my joints hurt , ihave no energy , always tired , icant afford my medicine its to expences, no one will help me , is there anyone to help me , , ineed help hope some will read this and give information about this."
"This website has been very helpful to me and I now have it as a useful reference not only for me but for my family and friends as well. Knowledge is power to me and I am very grateful. Thanks"
"I was just wondering about a new drug I heard that is or will be coming available...Someone mentioned it to me, but they ddnt know the name or really anything about it...If you have any information or could point me in the right direction I would appreciate it...Thanks."
There are several different drugs in the pipeline...check out the recent back issues of our newsletter.
"I just have a quick question about crohns. Can it cause chest pains also. I have been having stomach problems for at least 4 years now. My doctor say's it's irrital bowel syndrom but I was never tested for it. Sometimes it hurts so bad I feel like vommiting. But if I go to the outpatients they just send me home. My symptoms are extremely sore stomach, lower back pain ( mainly sore back after cleaning the house or something) and as well chest pain.
I don't have any bleeding after a bowel movement but remind you I do have like a cloudy mucus that come's out of my rectum after having a stool. If you could get back to me that would be greatly appreciated." - Candace
I have heard of some instances of chest pain, but I'd like to hear what our visitors have to say...anyone care to share some insight?
"I have crohns. I'm 27 yrs old and I wait tables. so I don't make enough to start a savings. I also have a 21month old daughter so thats all my money. I've been in the hospital alot lately and I'm have trouble paying the bills, I'd like to know if there is any kind of funding to help. they say I'm not able to get disability or temp.assistance from the state because I still work when I'm not sick. If there is any I would like to know. thank you"
"I have a friend who has crohns disease. He has not had any flare ups in 8 years, yet he is working in china for 6 mos. and started to feel fluish and had abdominal pain. They thought it was his appendix. After a colonoscopy came back negative, they decided to do surgery to remove his appendix and when they biopsied it, it was riddled with Crohns.
He is feeling really sick and frustrated...far from home and doesn't know what to expect. They may have to do tests to find out if the crohns is anywhere else. What are the chances that he will make a full recovery? Will medication help at this point?
Crohns Disease unfortunately is a life-long condition. Thankfully there are medications that can help, so have your friend consult his physician and determine the best course of action.
August - October 2006
Hi I'm a 21year old female. Was diagnosed with crohns disease in August 2005. It all happened out of no where...I was feeling good and healthy and then one day i just felt sick--constant diarreha, many times bloody, which lead to dehyration and anmeia, no energy, i was always sleeping, no appetite, fevers...It was Horrible!!!!!!!!!!!!!!
My mom took me to the ER and I had blood tests, a colonscopy, Cat Scans and soo on done on me. They found out that I had ulers in my large intestine and it was imflammed! They put me on high doses of Prednisone throught IV, but my body did not respond to it. I ended up having to have Surgery and that left me with an ileostomy. They took out my whole large intestine but left the rectum in place. =(
For a year I had the bag and it sucked!! But at the same time I felt healthy. No flare ups or anything like that for a whole year.
My surgeon told me it was up to me if i wanted to get reconnected(small intestine to my rectum).Of course I said yes! I didn't want to live with a bag for the rest of my life! So this year, July 2006 I had the reversal. Everything seemed to go well, but then 2 months later, i had a FLARE_UP!!!! Cramps, no appetite, no energy, always tired. I had to put on Prednisone agian!! I was on 60milligrams and was tapering off. But when i got to 20milligrams the flare-up came back!!!!!!!!! But this time the dairrhea was even worse!!!!!!!!!!
I was goin like 20 times a day!I was so sick and tired of goin. I didn't even get enough sleep cus i was having to get up and go. So that made it worse, I was tired, tired, tired!So as of now I'm back to 60milligrams...I hate the side effects! I'm am just starting to feel a lil better just today. But I seriously feel like a whole differernt person. I don't feel happy, I'm having mood swings all the time! I hate it. And my face is getting big!!
I just hope to come off the evil prednisone soon and never ever get on it! The docs are hoping that the 6mp will work for my crohns. I pray that it does.....
Oh i just hope one day somebody finds a cure!! It's not fair to live life like this. we only have one life on ths eartha and should be full of joy and happiness!
Hi there my name is Rachel and I am 22 yrs old. I have crohn's diease and am suffering in my own way.
I first started goin to my gp's around 2 years ago, with symptoms that i had, like severe toilwting, stomach cramps, blood in my stools etc.. my doctor told my i had irratable bowel so put me on the required tablets. my symptoms continued and became more severe so i returned to the doctors at leats 14 times, each time being told different hings. at the time i was pregnant and my doctor told me " rachel your pregnant your body is adjusting to this". then i had my child and was told my symptoms were because i had just had a baby and my body was getting used to it. then i returned again to be told it was because iwas breastfeeding, and returned agian to be told it was because i had finished bReastfeesding that i was gettng these symptons.
Then one day i woke up and couldnt move my leg it was swallon, sore and bright red, i went to the doctors and was rushed into hospital with what my doctor thought was septic arthritous. when in hospital they discovered that this wasnt the case and i did actually have ablood clot in my leg. i explained my symptoms to the doctor in the hospital and they tested me for crohn's and low and behold i had it. by the time they had diagnosed me my consultant said that i was that badly infected it had affected my small bowel, large bowel, stomach and assophegous. and put me on the relevent medication including iv meds. i was in hospital for 6 weeks and when i was discharged i left the hospital on exactly the same meds i was on when i was in.
It is now 10 weeks since i left hospital and i am still in the same excrutiating pain, to the extent where i cant get out of bed, cant play with my children and cant be runnin around arranging the last minate plans for my forthcoming wedding in 2 weeks time taht has been arranged for 2 yrs. i am sat here writing this crying, i dont know what else i can do, i seem to be speakin to my desegnated nurse and consultant all the time, but nothin is getting any better. at the moment i can be going to the toilet up to 24 times a day and am not eating because i feel so sick and am in constant pain even though i am on a lot of morphene. i just want to be normal again like im sure a lot of other people do, i want to be able to take my children to the park, i want to be able to leave my house without fear of soiling myself and bein in such pain.
I really think i have come to the end of tether with it all, and dont honestly know how much more of this i can put up with.
Hi,
I'm 42 years old and have Chrons Disease. I was diagnosed in 1999 after going to my primary doctor for over a year with disharges from my rectum only to be given samples from his closet. However, I think I had crohns longer than that. I lived in bathrooms with diareaha and stomach aches. If I ate the wrong food my stomach would cramp. This went on for years in my late 20's to early to mid thirties.
The pain and discharges continued to get worse until I went in his office crying hysterically from the pain and discomfort. He sent me to see a surgeon saying I had hemorroids that needed to be surgically removed. The surgeon took one look and told me he couldn't help me and referred me to a colon and rectal specialist/surgeon. I saw the surgeon the next day and was told by his asistant that I had crohns disease after taking one look at my bottom after bending over a table that puts your exposded hinney in the air. Talk about letting it all hang out for all to see.
Finally a name for whatever was causing the pain, discomfort, bloody, mucusy, pencil-like stools. I was relieved thinking finally I can get fixed...Finally!!! Not!!! I was put in the hospital the very next day having a golf ball sized abscess removed from my colon. This was only the beginning of many visits to the hospital emergency room and various rooms I've stayed in once admitted. I've been in almost every room on the surgical floor. The nurses knew me by name as well as I knowing them by name. I've had hundred of tests and it seems like hundreds of medications. This journey has been a very difficult one. I've had 30+ surgeries (some major, some minor). Many to remove abscesses or to fix complications from the fistulaes that seem to want to invade every organ I have. Now I have a fistuale starting from the rectal area going to my female organs that constantly drain bacteria. Talk about annoying.
I stay on antibiotics, yeast creams and yeast pills. I've tried Remicade a couple of times to try to close the fistulaes with no help. So I have to have reconstructive surgery to remove the fistulae and damaged tissue from years of infections and surgeries. I have an irreversible ileostomy called a total proctolectomy. I hate it...absolutely hate it, but it saved my life. I'm getting used to having it, but still face insecurities when it comes to intimate relationships. As I type now I have tears in my eyes wondering if I could ever overcome this insecurity and realize that I can be loved with this appliance constantly attached on me. I'm seriously considering mental therapy to help me cope with my depression.
The ileostomy saved my life and for that I am grateful. I've been on every drug out there (Asacol, Flagyl, Prednisone, Imuran, Pentasa, Cipro, Levaquin, etc, etc, etc...)just to name a few). Believe me I've tried them all without much relief from any of them. I truly believe if I were diagnosed in the early stages when I had the discharges of blood and muscus I could have been properly treated and the disease maintained and keep at bay. Therefore, don't ignore what your body is trying to tell you is wrong. Push your doctor to send you to a specialist... After my ileostomy I'm pretty much in remission except for the constant pain from the fistulas and scar tissue and the stomal hernia I've had which required more major surgery. I've had a tubal, ovarian abscess which required surgery and a 4 week stay in the hospital as a tube ran out of my stomach to drain the monsters.
I've had kidney stones which are a result of the crohns that required surgery....WOW...anything else? I must however admit that the ileostomy has made my quality of living significantly better. I can operate on a day to day basis without constantly running and living in the bathroom, spikng a fever and needing to make my monthly appearance and stay at a hospital.. However when I first got the "bag" I would have accident after accident after accident (spillage of the contents of the bag on me and my clothes) until I discovered that a bag with convexity prevents spillage. Thank God, because I was going into severe depression. If you have Chron's make damn sure you get a doctor who is trained in the treatment of the disease. Not every GI doctor is trained to treat Crohns and you will become their ginea pig. You'll know...learn to trust your instincts.
I would recommend you start with a colon and rectal specialist/surgeon. They can refer you to a GI doctor with an above average knowledge in Chron's Disease, but don't trust that recommendation alone...Do your homework. Ask a lot of questions and if they don't have an answer or seem to stumble on their words find another doctor. Also, try teaching hospitals..Ask for the teacher doctor and not the student. Not to take anything away from the student who is now a new doctor, but I've found out that the teacher is more knowledgeable and it eliminates the middleman, especially with the severity of my disease.
I've learned alot over these years. You must do your research until you find the specialist that knows what crohns is and all the treatment available for it. God Bless and the Very Best of Wishes to you!!!
I am Sam, 49 yrs of age. I am a Crohn's patient. I am currently taking Imuran as well as a study drug, Residronate and calcium and vitamin D.
After about 5 yrs of misdiagnosis and many hospital visits I was finally diagnosed in November 2004. I experienced different ranges of symptoms before the Crohn's diagnosis including weight loss, fever, abdominal pain and swelling on my lower right side (appendix which was removed in 2000). Ultimately I would have spasms in my upper stomach area, severe vomiting and unable to keep even a swallow of spit down. I was hospitalized for these bowel obstructions and severe dehydration several times and ran the gamut of drugs to stop the flare-ups, opting for bowel resection when I was becoming ill monthly.
Good ol' Prednisone... I've vowed never to take it again. I tapered off Prednisone after my surgery as per doctor's advice. I experienced some of the side effect while on the drug, hair growth and moon face but didn't gain excess weight as some do. Lucky me or so I thought. I have no ill effects from surgery and no sign of Crohn's flare-ups.
What I DO have is cataracts in both eyes. My vision is so impaired I do not drive, cannot read or do the things I enjoy. And that's just the cake! The icing is that I also have arthritis in all of my joints: feet and ankles, knees, elbows, wrists and hands. I had no indication of this while on the drug, no arthritic pain whatsoever. Doc says it'll disappear in time. I wonder how long.
I have been approved for Remicade but cannot begin those treatments until both my eyes have had cataracts removed and are healed. I'm on a waiting list for those surgeries, one eye at a time. My husband continues to be my strength and support. I hate being a burden to him and want more than anything to find work, to help pay the bills. With these (not so) wonderful side effects I'm virtually unemployable in a city begging for workers.
Don't get me wrong. I'm a positive and motivated person most days. The days of minimal pain I work as much as I feel able. The days I can't I'm more angry than depressed. But there are so many others with so much more pain in their lives.
I'm grateful for being as blessed as I am. You all hang in there and I will too.
January - July 2006
"My daughter, Jessica has been unwell since the age of 6, she gained an enourmous amount of weight, she repeatedly said she did not like the feeling she had in her stomach after eating and would vomit to get rid of it. She had headaches, stomach pain, vomiting and mood swings.
After regular visits to the doctor and constant calls from the school advising us, Jessica was just seeking attention and just wanted an excuse to get of school. At almost 11 years old, Jessica was rolling around the bathroom floor screaming in agony, she would sit in the bottom of the shower in pain. I took her to the doctors once again, I insisted on an ultrasound, she was diagnosed with about 30 gallstones and underwent a Cholesystectomy. Another 12 months of pain and several stays in hospital we were again told it was Physcological and there was nothing wrong with her.
Jessica was referred to a psyciatrist for counselling, I always only wanted her to get better and even though I knew they were wrong I agreed. Another 12 months of weekly visits for counselling and pain management, without improvement, I insisted on a second opinion. Tests indicated she had duodenal ulcers with active cells, she was on nexium for 6 weeks. After endoscopies, colonoscopies, cell scans, barium swallows, blood tests and endless medication, Jessica has been diagnosed with Crohn's disease.
She struggled all through primary school and has just started high school and still struggles every day, she has started on Sulfasalazine and will have continual check ups. Even though she now knows what her condition is, she has a long way to go."
"My story started about 10 years ago at the age of 23 I went to the hospital with severe cramping on the lower right side of my stomach. Blood test revealed I had an elevated white blood cell count’s-ray had nothing substantionally to reveal. I was really hoping that I had appendicitis.
After an ultra sound and chron's specialist diagnosis it was determined I had chron’s. I was treated in the hospital with steroids and anti biotic. Then latter, put onto prednisone 60 mg to start, and then ramped down 10 mg / week. Approx 3 months latter I was back in the hospital. I again had severe cramping, vomiting profusely and lost about 15 pounds. This time I had a resection witch removed 6” of small intestine and 1’ of large intestine. After this surgery I was on aminosalicylates acid for about 1 year and then went off. There were a couple of times I thought I had food poisoning but it was the chron’s acting up. At the age of 30, I started a new business and my stress is through the roof. Frequent visits to the hospital with same systems vomiting, stomach cramps, and weight loose.
For 5 months I spent about a week in the hospital out of every month. Trust me, a new business and this performance was not working very well! Nov I was treated with steroids and antibiotics and then released after every thing settled down. My specialist talked about treatment options but opted to stay at status quoi. Again in Dec I was back again same systems and treatment. After released I was put on immurane 200mg / day. Again back in Jan. I was also put prednisone at 90 mg / week. Again back the following month with same systems and the same treatment. By this time I was telling the Dr in emerg. Exactly what meds I required by label and quantity. The specialist to me we should give the immurane a little longer to take affect. He also mentioned the next time I come in surgery may be required.
So back again the next month and off to surgery it was. So again I had 6” of small and 1’ of large intestine removed. 4 days after my surgery I ended having my intestine being perforated. It was my family who pressed the issue through my voice that something was wrong. The nursing staff would have let me die to be honest I don’t even remember this happening; witch is probably a good ting for me! So I went in as an emergency surgery and ended up with an ileostomy. For at least 2.5 week after I remember very little of the events between the perforation and the drugs. I had lost about 50 lbs as well.
If I were to try surgery like this again I would get of the immusopressent and get my nutrient levels in order. 8 months latter I had the ileostomy reversed surgery went well and I wasn’t on immurane. 3 months latter I am back on the immurane. It’s been about 2 years after my reversal and every thing seems to fine. I find stress seems to play a large roll in my chron’s flaring up. Get lots of rest eat right and exercise. So far it seems to be working for me. Good luck! Every chance you get press your Dr on new information you are your best advocate. Not all Dr's will make choices that are in your best interest."
"Hi im a 20 year old female, i was diagnosed with Crohn's when I was about 10. I was going to see doctors every week before being diagnosed they didn't know what was wrong with me at all, being so young it was quite scary and i was made to feel like a 'freak' as the doctors didn't have a clue.
My symptoms weren't what is considered the norm though, my mouth was very ulcerated, my lips were swallon and sore. (one good thing though at lot of people would pay for lips like mine ha) i suffered endless insults from kids at school 'rubber lips' was always a favourite. They also didn't understand why i had so much time off school. I was tired all the time, my bowels did give me trouble but nothing major.
I had a biopsy on my mouth which confirmed the chrohns after about 18months of no-one knowing what was wrong with me. I was taking 18 steroids a day at one point but they didn't reduce the swelling. I then had an operation I had steriods pumped into my lips directly, this didn't work. I was eventually transferred to another hospital and under yet another consultant. i tried loads of different medication before finally getting a result from corlan pallets which disolved slowly in my mouth i had to take one 3 times a day, as well as use a steroid cream. I finally got discharged on my 16th birthday which meant i didn't need to keep going to the hospital for check ups and i've been fine for 4years i don't take anything anymore. but now I've been suffering from really bad pain in my lower right abdominom, diarea, loss of weight and appetite, i've also been feeling sick alot and throwing up.
This has been going on for about a year now plus I'm tired all the time no matter how much sleep I have. I have like everybody good times and bad times but i'm having more bad at the moment but since i haven't been to the hospital for so long I'm scared and putting it off. Today however, i've been researching the disease and after reading all your stories i'm going to the doctors tomorrow! It's no good thinking it will just go away because I'm probably making my self worse without the medication. Anyway I'm going to saty positive and try not to let it effect me!"
"There was about a year when my appetite increased and I had gained about 10 lbs. I kept getting blamed for the weight gain, and nobody understood why all of a sudden I required so much food. Then, I started getting sick maybe once every couple of weeks in my classes. I got really sick to the stomach, and the pain would come and go. Everyone would look at me kind of strange because tehy didn't understand, and neither did I. It always happened after drinking things like Sunny D, or orange juice. I woke up one day and noticed something irregular when I used the restroom.
After that, my mom and my dad talked about taking me to a doctor to have me examined. At first, they said they found nothing, but then I started having symptoms that I had never experienced before, like back pains at 5am in the morning lasting for up to 9 hours, which I also felt through my chest. I knew that something was seriously wrong, but the emergency room told me I had irritable bowel syndrome, which didn't make sense at the time, because it was just back and chest pain, and the emergency room told me I had gas bubbles, which really sounded ridiculous. They gave me this medicine I knew wouldn't make it better, and I was told to take it every day I went home from school with back pain. I was at home for 9 hours or so in constant pain. I tried getting into the shower to lessen the pain, but it barely lessened it, and when I got out I felt so bad.
I needed to get to the doctor, and my dad couldn't take me because he has people who aren't dependable at his job. So I didn't know what to do. The doctor was saying it was an emergency, and my dad was saying, "I can't do anything." I was so scared. One day I had to go home from school, and the pain never went away. I was up all night with the pain because it made it impossible for me to sleep for more than 30 mins at a time, so I probably got 2 hours of sleep at the most that night, if even that. I went to the doctor, and they said they were admitting me into the hospital, where they told me I had gall stones. The gall stones were triggered by the Crohn's disease.
I had surgery, then a few days after that was gone, I was diagnosed with Crohn's disease. It was very hard on me because I was put on steroids that made my face huge, and people would come up to me and ask me what was wrong with me, and that people were saying I was pregnant, and ridiculous things like that. I felt ugly. For about a year my symptoms were extremely bad, making it almost impossible for me to be at school.
Of course, I don't have a car, and I had no way home, so I had to sit at school and embarass myself. I had nobody on my emergency card who was dependable, so basically I just had to sit there. I tried talking to my dad about a used car, or something, but he just said he didn't have the money, and my family believes I should work for things, but I wasn't well enough to be doing anything. I was having burning in my stomach, and diarrhea, which sometimes went on for about 7 times in a day.
I was even told by someone that use to be a nurse that I would probably never be able to work a job, other than something at home. As of right now, I haven't had the burning for 7 months. I work a job, and will be enrolling to college this fall. I hope that everything keeps going the way it does, and that nothing will make what I have worse."
"Hi, I'm John from toronto, canada. I'm 37 yrs old.my symptoms are stomach cramps around my belly button and lower right side, severe diarrhea, loss of weight and energy, bloating and sometimes nausea. went to see the doctor and was told that a had to go for a colonoscopy, cat scan, ultrasound and upper gi xrays.was told after all these test that i had crohn's and was parially blocked and had fistulae going from my small intestines to my large intestines. was told that i might need surgery(by the way i had divertocolitis a couple of years ago that was so inflamed that they had to take out 3 feet of my large intestine, 1&1/2 feet of small intestines and part of my bladder).
But because of my past surgeries that they are going to try medication first. because if they do surgey there won't be much of my intestines left. so they put me on pentasa and to see a gi doctor. about a 3 weeks later i went to see the doctor again for follow up and was told to stop taking the pentasa.(wasn't helping anyways) was put on metronidazole and ciproflaxcin for the fistulae and budesonide for the diarrhea. was on them for 2 weeks and was starting to feel better. bathroom trips were down from 10-15x a day to 4 or 5 days and diarrhea was going away. by the way still waiting to hear from the gi. then all of a sudden all my symptoms came back with a vengence. went to see the doctor again & was put on prednisone(30mg/day) instead of the budesonide.
Also I'm taking B12 for supplement i'm getting extremely frustrated since my diet has not changed since i was diagonsed and was told it will be 3 months before i get to see the gi doctor. so that is my story so far. best of luck to all who have this disease."