Here are some more stories about the trials and tribulations of having Crohn's Disease.
As I read the stories here my heart has gone out to you all. I was always tired as a teenager, I had a tough time from my family who considered me a hypochondriac and lazy yet I always held a part time job and did well studying. I made it to university where it got worse, again my family put it down to hypocondria and I began to think perhaps they were right... it took over seven doctors before one sent me to hospital at the time I was working in a bar to pay myself through university, I was bleeding severely when I went to the toilet and had almost persistent cramps, some of which would make me fall to the floor in agony. But I would get up and keep working, madness!!! On one occasion I fell to the floor in a department store and I felt a hand help me up, and a soothing voice console me as the tears streamed down my face, it was an extremely old woman, who herself was bent over somewhat, and there she was helping me up- that old woman inspired me so much it still brings a tear to my eye, she was may angel, a brief moment but a profound one. My system was in a horrible mess. The relief of simply being believed and having something wrong was overwhelming, I admit I had a great deal of anger towards my family for their attitude. Even after finally being allowed out of hospital I kept working and going to university, because I look fine, people think I am fine, it is not until I become overly tired and my eyes blacken and my posture goes badly from being overly tired that people begin point out I look terrible. I have had a 4 year remission but am still tired most of the time, regardless of how much sleep I get, in fact as I type I am at work and busily doing paperwork to avoid walking around too much, I just can't and I'll have to catch a cab, even though it is a short distance. I am on no meds except B12 which if I don’t get I just cannot function, my fiancée is wonderful, it is hard for him as I hold down an extremely stressful job, I work 7 days a week often and long hours, but the key is for a positive attitude, living in the moment, I cannot feel sorry for myself when there are others far worse, at least I can work and I have achieved every goal and dream I had, with no help. I don’t know for how much longer I can do it, but as I am still paying back my degree there is no option, many people with this simply HAVE to work, there is no option. Because of this I developed a positive attitude to myself, I am proud I have managed and I will not let it beat me. We have a lesson here, we can find out where lies our own positivity any which way, be it Church, a temple, taking care of pets, movies, a book or a hot bath to soak in...you find it and you treasure every little thing that makes you feel better and you smile right in the face of this thing. Even those moments when you are low, let the pain pass and look right in the mirror and you see yourself still standing there and I'll be there next to you smiling too.
My deepest and warmest wishes to you all.
Joanne
I am a young male, in my early thirties. I can remember back to age 11, as far as having symptoms of crohns. I was dx @ age 13 with crohns disease. I don't really want to use up the entire board as it would take that, maybe some other time. The biggest problem that I often see is one of people being in pain, and not being able to get help. Know this, you have a legal right to not live with pain. I myself took the pain management route 3 yrs. ago, and am content with the quality of life I now have. This is not for everyone. What I often see is people ask why their g.i. doc will not give them any type of pain med, or only a few lower class narcotics. The reason is that no doctor, except a pain management doc., or pain specialist, will prescribe these for long term use. They have a vast array of strong narcotics which do work on pain. Also your g.i. doc should have no problem if you decide to take this route, you can continue to see your g.i. doc, but it is very wise to tell your g.i. doc any/all meds you are on. BlueXanaX
I started all the symptoms 3 yrs ago. Pain, diarrhea, losing weight, fatigue everything and went undiagnosed for 2 years. They just kept giving me new drugs and things just kept getting worse. I would go days being confined to my bed because I was in so much pain and had so many frequent BM I was too scared to leave me house. Finally last year on January 9th I couldn’t eat and I forced some bread down but I was in sooo much pain and I started vomiting so my mom took me to the ER. They took some tests and said that I had an appendicitis and needed surgery immediately. Well turned out it wasn’t an appendicitis at all but crohns disease. I had a large portion of my small removed and just a small section of my large removed along with my healthy appendix. I started on pentasa...didn’t work. Tried other things...didn’t work. Now I am on Imuran, flagyl, prednisone and remicade. The IV treatment remicade is helping out a lot and I usually even get excited for the 8 wk treatment because I know I will start to feel better again. I still have problems with fatigue and have a hard time gaining weight. My doc said I probably will just never have normal BM again. This is something I have accepted and I just hope that once I am out of college maybe my stress level will lower and maybe things will start to look up. I still have bad days and flares but I am way better than what I was 2 yrs ago heck even 8 mos ago. Most people cant even tell I have a disease anymore. Before these new treatments all I heard was how sick I looked and well it didnt help I was always in and out of the hospital for being too underweight or internally bleeding and what not. I was hospitalized a total of 11 times this yr including my 2 wk stay for surgery. But now I haven’t been hospitalized in 3 mos so I am really hoping 2005 is the yr for me.
I was 30 when diagnosed with Crohn's disease. I am the mother of five. Two of my children are ADHD, ODD, Depression. I also have a daughter that has what is called undiagnosed ADHD. My stress level is very high. I am also in the service and I was called to active duty to fight overseas. I love my job but I had to face reality that I could not go overseas with my condition. I am still in the service but I do not know for how long since you can not have Crohn's disease and be in the military. I can still do my job just not overseas. The doctor's I go to have me on many pills a day (Pentasa 1 gram 4x day) along with valium for the pain. I am told that I have what they call the general case of Crohn's disease since it is all throw my colon. I have to have my meds switch approx. every 6 months because they no longer work for my system. Two years ago prior to being put on Pentasa I was so sick from Crohn's I had to have help just getting up. I was in and out of the hospital for infections caused by the meds I was on that was killing my immune system. I could not fight colds and constantly had pneumonia. At one point it got so bad I also had pleurisy. The pentasa has helped for a while but since being also on the valium for pain it has helped out a lot. I have requested surgery since I am tired of being in pain but since I am only in my 3rd yr of diagnoses no doctor will do surgery even though I have crohn's all the way into my small intestines. I have test run yearly to bi-yearly depending on pain levels. I have been on so much steroids for inflammation that I go from 141-173 all the time. I know the more stress I am under makes the pain worse. No one in my family has crohn's and it is hard to deal with. With the crohns I have the day to day living that normally takes place seems like hour to hour. My flares up are coming more often so I know my remission is coming to an end. My mother found some low acid tomatoes which she now grows yearly for me since I like eating tomatoes but the acid would cause me more problems. I watch more what I eat now than ever but I know I am eating health. All the chocolate and pizza are no more. The more calories I seem to take away the better it seemed to calm down my flare ups. I would recommend it. I not only have Crohn's disease but also been diagnosed with GERD, and IBS.
I would like to share my story with you. I have had bowel problems for 35 years with no diffenent diagnosis til just 2 months ago. I have chrons. I just had surgery. I had severe painn and vomiting and nothing was done. I was told I had this, that and the other thing and that there was no treatment for the things I had. I now am told that diseases I was told I have, I probably don't have and that it's probably only the crohns disease. This hads got me flipping mad at the medical profession but little I can do about it. Now it's to the place that it's real bad and I got to learn to adjust to the fact it will probably not get better. My life has been hell not having been properly diagnosed all these years. I've lived in constant pain for 35 years and not allowed pain meds in case I get addicted to them and still they will not put me on them. Can you give me some insight as to how to adjust and live the rest of my life with this terrible disease and how to deal with the pain. Heidi Higgins
When I was 21 I had abdominal pain daily. There was nothing I could eat that wouldn't make me sick to my stomach. As a result I started to drop weight. I slept all day. Just going to the store was enough to make me exhausted. Over 8 months I saw 5 doctors none of which could tell me what was wrong. They all assumed that since I was a young, white, and female that I was anorexic. One went as far as to tell me the whole Karen Carpenter story. The more I denied it the more they told my to see a therapist. In the last month of my eight month span I dropped 30 pounds, that is when I went in to the hospital. It took the doctors there four hours to figure out what was wrong. Four hours!!! I was in the hospital for a week, and they explained my disease to me. I was put on a diet of Prednisone, Pentasa, and Flagyl. After my stay I was home for exactly a week. I woke up one night feeling awful. I threw up nine times and could barely walk because the pain was incredible. I went back to the hospital, and found out that I had two abscesses, and was bleeding internally. I didn't have enough blood to be operated on. After three transfusions and a lot of praying the abscesses had disappeared. The doctors could not explain it. That hospital stay lasted a month. I tell you this not to scare you but to give you hope. It has been three years since then. Now I watch what I eat, so much so, that I do not take any medication. My flare ups are down to maybe one mild one every two months. I went from the doctor saying that he didn't know if I would make it and to call my relatives to living a full life. So I can't have any nuts or seeds big deal, but I can lead a normal life. Two things if you are struggling with this disease, one make sure doctors listen to you, you know your body not them, and two, be careful at Chinese restaurants they sneak sesame seeds in every dish. :)
I am 29 years old and I was just diagnosed with Crohn's disease this past December 2004. I had serious bowel issues along immense pain in the right abdomen. I had a colonoscopy and an upper endoscopy to determine the illness. The doctor told me that I may have had this for the last few years and since it has gone untreated for so long it is very severe and "abnormal." I am currently on Pentasa and Entocort along with Tylenol with codine. I have been dealing with so much anger and frustration. I teach high school and I have had to miss many days due to the upset stomach but most of all I am extremely tired! I do not like to go to social functions for fear of getting sick along with the extreme fatigue as socializing. I am fortunate to have a very loving husband who has been very patient and nurturing.
My name is Peggy. Please read this. I don't know if I am in the majority or minority, but there is LIFE after Crohns -- and it's good! I am a young and positive 52 year old with a great support group. I was diagnosed with Crohns in May 2001 just before my daughter's 16th birthday. I have always worked in advertising, fast paced, extremely stressful direct marketing lettershop and fulfillment. I've always hated to wear panty hose or tight pants because they put too much pressure on my tummy. My bowels were never regular and my monthly periods were extremely painful. I've had irritable bowel for many years and always felt there was some connection between my monthly cycles and my guts. Not until I was diagnosed with Crohns did I realize how true this is. In July 1999 I had a terrible flare up resulting in a 20 pound weight loss in 4 weeks due to loss of blood and an inability to eat. 3 months of Prednisone helped me, but in December 1999 I was back in the hospital for another week. This time I had those painful nodules on both knees and needed a wheelchair. I was taking Asacol, but I had not changed anything else. I was still eating and drinking whatever I wanted, smoking and working 60-80 hours a week. My gastro told me she would make me feel better, but I had to help her. Over a ten year period, my work responsibilities had grown enormously; I was responsible for almost 200 employees and helped grow a start up to a $40 million dollar company. At what expense? You guessed it. Corporate America took over the start up; paid me a lot of money to stay, then paid me a lot of money to go -- it was the worst and best thing that could have happened to me. Six months after termination, I was almost comatose and hospitalized for 14 days. My internist couldn't believe I was still on my feet. Due to job loss, my insurance had changed and it was very difficult as a "new patient" to get in to see a doc quickly. I didn't realize how bad my condition -- I just knew something wasn't right. I was gray, my tongue was fuzzy, I could not eat, I was vomiting. From February to April I lost 15 pounds, ate about 1/2 cup of broth at a time. My blood level was so low, I had to have an infusion before a tumor the size of my fist could be removed from my colon. Prior to surgery, the docs sat down for a "talk" with me and my husband. They were sure the blockage was cancerous and we discussed my options. At best, I'd have a "bag for waste" and chemo or radiation to follow. So imagine, my surprise at the diagnosis of "Crohns" not cancer. The blockage had been removed along with my colon, but the tumor was not cancer. The biopsy was at the Cleveland Clinic for 6 weeks before the diagnosis came through. I don't believe my colo-rectal surgeon was convinced of the diagnosis, he felt the symptoms leading up to my diagnosis weren't Crohns, but I accepted it and started to read everything I could find. Eight months later, I returned to surgery because the colo-rectal surgeon had enough foresight to consider my health and life status. He was able to take down the "ileostomy" and at the same time found another tumor, this one was on one of my ovaries. Due to Crohns, only the ovaries and tubes were taken in order to help prevent fistulas. Instant Menopause. And, today I am doing AWESOME! I take 3000 mg/day of Pentasa, A Hormone Replacement Therapy, whatever vitamins and supplements I need. I have a very low stress job I love. I exercise 6 days a week -- weights, cardio, pilates, yoga, kickboxing -- walking and running. I watch what I eat very carefully -- I do not drink alcohol and never eat large amounts of fat. No mayo, heavy salad dressings, french fries, chips, fried foods -- you get the picture. Sugar is my enemy -- I love it, but it does not feel the same, so I eat only small amounts of it and never at night. My weight is stable and I haven't had a flare up in (knock on wood) almost a year. I feel great except for a little carpal tunnel. For a reason, I have yet to put my finger on, spring is always a "testy" time for me -- I cannot digest some dairy products then, but by summer, it passes. Though I thought I'd never eat fresh fruits and veggies again, I load up on them every day. Sure I have several bowel movements a day, but they are easy and painless. I feel very strongly that the team of doctors working with me were/are key to my success and survival. And a POSITIVE attitude is also very important. Please be sure you get the care you deserve and that you make good choices and positive changes in your life.
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