Your Crohn's Stories: Oct '07 - Mar '08
Following are the stories you've submitted from October 2007 through March 2008. We invite you to read what others had to say, and perhaps submit stories of your own.
You can also post comments and questions on our Crohn's Disease Forum.
"Hi..Im a personal trainer that has a client with crohn's disease that has lost bone density since she has been diagnosed with crohn's and her surgery to remove a major part of her instestine...im trying to find some information in regards to crohns and exercise in order that i may educate myself and therefore find the type of regime that would be most beneficial to her..any suggestions would be greatly appreciated..
Thanks Christina...anyone with some information or suggestions, please send us an email."
"Finally I have found a site where I can read about other people with crohns disease!! Thank You!! I was finally diagnosed 4 years ago after being sick on and off since I was 15 years old. I am now 52. I really like my doctor but I am so tired all the time!! It's really pitiful. I have constant stomach pain.
One night I was sure I would die from the pain or my intestines would burst right open. I have had 2 GI bleeds which caused me to get blood transfusions and then be on iron pills for months. I take tons of asacol, am hoping to get on prednisone or something to help me. I also have eye problems and horriblejoint pain.
I don't have any health insurance as I was forced out of my job due to my being sick all the time. I have applied for disability but have been turned down --may try again with a lawyer but right now I am too tired. I take an antidepressant since I was widowed in 1993.
Since my last hospitalization I have been tired all the time. My last colonoscopy was better than the last one - then why do i feel like sh--! I tell the doctor this and she just looks at me.
Also I am overweight. How can i be over weight when I am in the bathroom 24-7?? anyhow thank G-d for this site- I will be back on soon.
Thank you for your submission, Carole. And hang in there...there are many others going through similar circumstances, so you are not alone!
"I guess it all started when i was 7yrs old. i started getin cramps n stomach bug like syptoms.diarhea,spotin blood,mucose,rapid weight loss,major irritability an d start of d most sickenin,debilitatin,blindin,gut wrenchin, agonising,burnin,sharp pains,u wudnt wish on ur mortal enemy. for d first year n half my gp had refered me to a doctor in harcourt street,who 4 d yr n half was clueless but to tell me n me folks i had severe repeated stomach infections r series of bugs.
My mam n dad knew der had 2 b more n eventually had had enuf of the cluelessness of the doctor n d problem,as i was terribly under weight n couldnt even hold dwn fluids. i finally got admitted to harcourt street 4 3 mnths with no result r resolution 2 d problem. I now was bout d weight of a bag of sugar and findin it physically impossible 2 stay conscious,eat r hold dwn fluids. finally d doctor admitted defeat and called crumlin hospital 4 a specialist,who i'm proud 2 say saved my life an is now d HSE executive. I dont tink its hard 2 figure out who it is.
I was imediately seen by d professer and given imediate treatment as a quick look and symptom read and he knew strait away it was crohns disease.After a year of tubes,steroids pain relief,berium tests etc it finaly was under control,i now hav had 5 surgeries n rigerous testing and am on serious pain relief e.g morphene nerve stimulay.If any of you out there want to chat bout my in between experiences and theres mayb search for me n my story wen your free and mayb i can help etc. "
Thank you for story.
"I was twenty-eight when I heard the words crohns disease. I had sypmtoms since I was twenty four. painful abdominal cramps ,passing blood,extreme weight loss.I was given no treatment,but began thourogh testing at that time, that was thirty years ago.at that time all of my small bowel ,and a good portion of my large bowel had to be removed.
I had left it to long thinking I could tuff it out,besides at that time all the doctors I had seen just did not know what the problem was. I was told I had a nervous stomach, but what was worse was being told it was in my head,which I started to believe.I was put into hospital but my fever stayed high for thirty days it was around 103f and then the bowel closed off completely and I was rushed into surgery as a last option. I came out of it with an illeostomy, [the bowel attached to the outside of the abdomine] with a pouch on the outside to catch the waste. I had no warning and was shocked at first. I had gone from 140 lbs to100lbs.and looked like those pictures you see on tv of people starving, I had lost all muscle and my skin was stretched over the bones and mt joints seemed so large.
At that time the only drug I remember was called salysophyrene, I used this off and on for years, dont know if it ever made any difference,.I did rebound for six months ate every thing I could lay my hands on and began to feel great ,resumed running my buisness and flourished for a while,then after six months started having problems,cramps pain,fevers. One year after my operation I was again admitted for a bowel resection,and then one year later another bowel resection.Since then I HAVE HAD many surgurys,8to 10 procedures,some resections,some to deal with abcesses,and I have had a couple of bowel blockages. I TPN, in hospital [being fed through a tube that is put into the chest],or a central line, I even took the machine home for six months! The hard part is not being allowed to eat anything not to mention being hooked up to a machine twelve hours a day.
My story is long and I have had to make many adjustments and deal with many complications,I now have short gut syndrome with only three feet of small bowel left and I am glad to say I eat anything I want most of the time of course I can't get much nutrition from some foods..Im now fifty-six and enjoy each day as it comes..DARYL..
Thank you, Daryl. You have a great attitude!
"Hi!! my name is Adam I am 23 yrs old i was diagnosed with Crohns when i was 18. I started experiencing symptoms in Jan 02, at first it was diarrhea and stomach pains but 6 months later i was a total mess.Bloating,cramps,eye inflammation,bloody stools,extereme weight loss, no appettite and wasn't digesting foods.I was down to about 120 lbs and felt like i was rapidly wasting away before my mom took me in to the emergency room.
I had all kinds of tests, they were all painfull but after 2 weeks in hospital i was discharged with prednisone and pentasa.For the past few years i was living in denial, i thoght i was cured my weight was normal . no flare ups no symtoms. This past summer I've lost alot of wieght,the pain is back and for the life of me i can't fall asleep. I feel like I've been awake for months in pain hoping things would calm down and i could put some wight back on but my Pentasa doesn't work anymore and I feel totally hopeless. I have no choice but to admit myself to the hospital next week and I'm terrified of the tests and results. 5 years in remission now almost all symptoms are back.
I feel positive about hospitalization and hope things will get better. My heart goes out to anyone living with this personal hell on earth.Wish me luck in recovery!! Also i think in recent months I've developed depression and other psycholigal problems and have been self medicating with painkillers. i just can't fall asleep anymore. ."
Thank you Adam, and good luck!
"Hi, I'm Emily from Winnipeg, Canada and I'll be 19 years old this December. I was diagnosed with Crohn's about 8 years ago when I was eleven, though some of the symptoms started showing when I was 8 years old. When the symptoms began in earnest I started to feel severe abdominal cramps in my lower right side and lower stomach. I was making frequent trips to the washroom due to diarrhea and I suffered from severe weightloss (I was 60 lbs at 12 years old) as well as fatigue.
When I was first taken to the Children's Hospital they thought that my appendix had ruptured and I was in the OR a few hours later, where they discovered that I had Crohn's. In my years since my diagnosis I've had two colonoscopies, an operation on an absess on my lower right side and finally a bowel resection where they removed a stricture by my illeum. The medications I've taken include Salofalk and Prednozone, both of which I've stopped taking since my doctor moved me to Azathioprine.
I haven't had a flare up since my resection. My little brother has since been diagnosed with Crohn's, and my mother has had it since she was 14 years old. Luckily she moved here from Minnesota in 1985 before she was diagnosed."
Stay positive Emily, and thanks for sharing!
"After graduating from college, I was fortunate even to find a teaching position in the middle of a school year. After several months of teaching, however, I began to feel extremely run-down. People kept telling me that it was the stress of a new job, and that working is much more difficult than college. I found that very difficult to believe as I worked 30+ hours while taking 18+ hours per semester (I graduated a semester early!), but I figured that it must be. However, in September, my situation worsened and I began to experience rectal bleeding.
I knew then that something was seriously wrong. At the time, I did not have a PCP, so when I came down with a sinus infection and went to urgent care, I mentioned the bleeding. They did not seem concerned, but checked for hemorroids. I did not have any, and the doctors advice was to not wear thong underwear (which I typically did not, but I was at the end of a laundry cycle, sick, did not want to go to the laundrymat or wear dirty underwear to the doctor)! I went home thinking that I was crazy.
I lived with the problem for a while, went to a general practitioner who referred me to a GI doctor. He did a colonoscopy and diagnosed me with proctitis. I asked him if this was a form of colitis, but he told me that it wasn't. I left confused. He gave me some medicine that did not help. Each time I went back, he prescribed the same medicine that did not help. Finally, after a year, he put me on a round of steroids. They helped, but I was retaining water on the joints and it was painful for me to move. So, I weaned myself off of the steroids (I'm also an asthmatic, so I know all about this!). I lived with the problems for another year, relocated, and went to a new doctor who did another colonoscopy and immediately diagnosed me with Crohn's Disease.
I have been on Pentasa since March (500mg, 8 pills a day) and anti-diarrhea medicine. In the summer, I felt great. But since September, I have experienced more and more problems (remember...I'm a teacher) because of stress. I'm not sure what to do about it. I sleep all of the time. I question my ability to be able to have a family, work, and keep myself healthy.
You can accomplish anything if you put your mind to it. Stay strong, talk to others, and read some of the stories on the site. You should find them quite inspirational as I do!
"I was diagnosed at the age of 40 but had suffered for at least 20 years prior. For many years I was told I had a nervous stomach to IBS & just deal with it. It wasnt until I had to get a new GP & she wondered why I had a very high white cell count for over ten years & feeling unwell every other week.
I had a CT scan with the dye injected & presto - "Crohns" was diagnosed with 1.5 metres of my bowel affected. It was in the terminal ileum initially. But over the years has moved further down as well. I had a resection in 2006 & have had some relief since this. I would certainly be questioning if & when I need recurring surgeries. I had complications post operatively with a blood clot on the lung with an Addisonian crisis, Subsequently I was taking blood thinners for 8 months.
What was supposed to be a five day stay in hospital turned out to be 3 months due to this complication. I also had low levels of potassium & my liver was distressed. The medications have varied over the years from Sulasalazine. Immuran, Prednisolone of which I am currently taking again, Nexium, Questran, Monthly vitamin B shots and regular pain medications."
Keep your head up...you will get through this.
I found out that I had Crohn's disease while I was serving in the United States Navy. Throughout childhood I've always had some sort of stomach ailment, but always contributed my symptoms to the food I was eating. But while in the Navy, I was in my twenties, and I was noticing that I've been having several episodes of diarrhea and abdominal pains.
I was visiting the doctor almost every other week and only being sent home of viral gastroenteritis. For the first year, the doctors thought that it was just a stomach bug or I just had irritable bowel syndrome. Eventually, I was paying too many visits to the doctor and the ER that my work decided to change my job position to what they considered a lower level stress position, hoping that the symptoms would stop. But, I still had the diarrhea, abdominal pains, fatigue and occassional fevers. My new doctor decided to run some tests on me as well as refer me to a gastroenterologist. My doctor had thought that I suffered from Celiac sprue since one of my blood results came up positive for it. So, I was also referred to a dietician. My gastroenterologist performed my first colonoscopy when I was 24.
I was then diagnosed with Ulcerative Colitis and not Celiac Sprue. But despite all the medications given to me to treat my UC I still had all the symptoms. It wasn't until I was hospitalized for serious abdominal pain, vomiting, and bleeding. I had another colonoscopy done as well as an upper scope done. I also had CTs and Small Bowel Follow Thrus done. After my stay at the hospital for flare ups I was referred to a new Gastroenterologist who still believed that I was suffering from Ulcerative Colitis.
For months I was being treated with UC medications with no prevail. The gastro doctor then wanted to perform another upper and lower scope on me because he believed that they might have been treating the wrong illness. Finally, after two years of trying to figure out what was going on, they diagnosed me with Crohn's disease and started me on prednisone. Prednisone worked for a while until they took me off of the steroid and the flare ups came back. Then I was treated with Imuran which also worked for a little while until I was hospitalized for two weeks for pancreatitis during the Christmas holiday. After my recovery, they decided to start me on Remicade.
For a couple months I was doing well on Remicade until I started developing reactions to it: hives, shortness of breathe, tightness in chest, and fever. Now, I am on humira and occassionally on Entocort (a different form of steroid). I do have some relief, but I still deal with diarrhea everyday. I am now medically retired from the Navy at the age of 27 because of my Crohn's disease. I have gained so much weight because of my steroid therapies. I go in for bone scans because my bones have now become weaker and I now suffer from osteoapnea. Despite being on humira and Entocort, I still have the occassional abdominal pains. My crohn's disease affected my life greatly.
The hardship contributed to my divorce and inability to be physically fit to serve in the Navy. I am currently unemployed because of the numerous doctors appointments that I must go to to figure out why I am still having flare ups. I have already gone through 5 colonoscopies and EGDs,1 flexible sigmoidoscopy, 3 small bowel follow thrus, 3 CT scans, and one dexascan. Been hospitalized 4 times for flare ups.
But on the bright side to all of this, I haven't had any surgeries, I was still able to give birth and take care of a beautiful healthy boy, and I haven't let the Crohn's disease bring me down despite all that it has put me through. I look forward to the day when I can have normal bowel movements and not have to see the doctor every other week.
What an inspiration! You have a great attitude...
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