Here are some Crohns Disease stories submitted by some of our visitors.
On the next few pages you will find over 70 stories from Crohns sufferers around the world!
hey everyone, well i came upon this site earlier today, for the past three days i have been in and out of hospital, i spent 13hours in a+e between saturday night and early hours of sunday morning. yestarday i had my first ever endoscopy, not something i want to experinece again, i then had a baruin meal, the worse part was no pain releif allowed or water as they wanted to see what was going on. i was first diagnosed with crohns when i was 14, i'm now 22, and i have been in remission for 7 years,so i'm not quite sure what has bought on this flareup. i've lost alot of weight the past month, not from going to the toilet but from not eating as the apsin is worse when eating...i don't have alot of the symtons i first had with crohn, such as blood in my stool, severe weight loss, ulcers in my mouth etc.. but they did say yestarday that it was crohns and no longer in my small bowl but little parts of inflammation all over my bowl and stomach, maybe the symptoms do differ, oh i'm so confused after 7 years of being well i thought i'd conqured my desease... i live in london, but i'd love to hear from anyone who has the desease you can email me on - liannaf@hotmail.co.uk take care.
I was 18, and started having horrible diarrhea, vommitting, and at the same time feeling constipated-blocked up inside. this was my first year of university and first year moving out of home. the doctor (an idiot, i no longer see her) constantly said i was constipated and did not reccommend i see a specialist. because of the loss of weight, (i went from being 55 kgs to 39kgs) she assumed i may have an eating disorder. one day after collapsing, in december, my mother took me to hospital, and the doctor there diagnosed me with crohns disease. i was put on immuran, mesasal, imodium, antibiotics and prenisolan. after 7 other hospital stays in the next year (from december to may) it was time for me to have surgery. i was so scared, nervous, anxious yet at the same time relieved that somethings was finally going to happen. i'd had a remacade infusion and it created an abscess in my small intestines. i had surgery and i dont have a colonscopy bag, (which im thrilled about) and my life is begining to get so much better. i still get exhausted easily and alcohol doesnt always agree with me, but i'm so grateful that surgery worked. i have a fantastic specialist, and now i am only on solofax and imodium. now i'm 20 years old and am back at uni, and i just really hope that i dont get a relapse of crohns disease for sometime.
Hello my name is Victoria I am a 37 year old A/A woman and I have been living w/ crohn's for 20+ years. I was 13 when I was diagnosed. You name the medication and I have probably been on it. Flagyl, 6MP, Prednisone, Metheltrexate, Ascriptin w/ Malox, Remecaid(which almost killed me)and numerous other medications, now Humira. Unfortunately I am one of a few with numerous other conditions as a result of Crohn's. I have marginal keratitist of my right cornea basically my cornea ruptured and I have no vision in my right eye. The medications I take for that are C-Medroxyprogestrone, Zymar and Cyclosporine which are all eye drops which I take an average of 6 times a day. I also have Spongilitist which causes back pain. Due to taking Cytoxan to try and save my eyesight in 1992 my ovaries were destroyed. However in 1995 on a routine dr appointment I found out that I was 51/2 months pregnant. I have had 2 colostomy's, 2 take downs and a few poisonous infections. Also I have been diagnosed with Chronic Fatigue and Fibromyalgia. What I have discovered is that stress triggers my Crohn's. Undergraduate and graduate school were very hard, but nothing compared to being a Parole Agent. The stress of the job was unbareable. I had to take FMLA twice. Finally I retired last year on disability. No, I am not the typical Crohn's patient but I take the hand I was dealt and try to play accordingly.
My story maybe the extreme case but people need to know. Crohn's has made me a very strong and determined person. Most people with Crohn's are eligible for disability if they need it, but be ready to fight the goverment. Social Security will automatically deny your claim but please appeal you will get your benefits. Thank God I have a wonderful G.I. and Rheumatologist.
Hi my name is Deborah Barnes. When i was diagnosed with the sickness of chrones i was 25 years, i started having terrible pains in my intestants when i was 6 months pregnant with second baby, she is now 24, so i have had the sickness of chrones 24 years, i have had three opertaions and i am going to soon have an other one, my first three was of the small itestant and now the large intestant i have a narrowing, so next week i am to have a colonscopy to see how far it is, i do alot of volunteer work and it helps keep me busy and being around people, i must say i do not know any one who has this desease, my youngest daughter also has it but she is doing fine so far, i never bleed but she does if she do not take the medication, i am taking now at the moment 4xdaily 2tablets of Mesalazine sandoz 500
also two times daily 2 tablets Azathioprine 50pch
i would love to email or chat with any one who has the sickness of crohns my email adress is
d.barnes@chello.nl
i live in Holland the Nederlands, but my fore fathers came fro schotland ierland,
I really hope i can hear from some of you all. thank you Deborah
My son was diagnosed with Crohn's in 1997 at the age of 16. There is no family history that we know of. Two years ago at the age of 50, I became very ill and my gall bladder was removed. I kept getting worse and was finally diagnosed with Crohn's also. I would like to know how many others have had this or similar situation happen? There doesn't appear to be any numbers that I can find. My prayers go out to everyone at this site. My son is my hero and you are all obviously the "everyday heroes" that walk among us.
Hi my name is Flora Whitehorne and i was diagnosed with the crohns disease when i was only 30 years old.my symptoms were bleeding of the bowels and cramping of the stomach,lost of appeitite,really sick.i almost died with this disease,i lost blood and i couldnt eat anything,the doctors had to insert a feeding tube in my nose so i could get some food in my body.i was in the hostpital for at least3 months straight.i was depressed, i had to walk all over again cause my body was shutting down,i had two blood transfusions,my hair fell out,i was 150 lbs.and went down to 89lbs.it was a horriable ordeal.i am taking a medication called remicade.i go to the hostpital to get it iv in for about two hours and this is done every eightweeks.this medication is very costly.it costs about 4500.00 everytime i take it and it does me well.i can eat and drink most anything now.thank god for insurances.need any more imformation on me you can email me. thank you for letting me get my story to you.
Hi My name is Pamela and I live in Auckland New Zealand. I am 43 years young and have had crohn's for 10 years now. My husband calls me and old crohn, fancy that. Anyway, I have been on mercaptopurine for 4 years now (75MG). I have recenly been told by my Gastro, that a patient is only allowed to be on this drug fro a period of 5 years. If you stay on 6mp for longer than 5 years, the chances of developing lymphnoma are great. If I stop the drug, which has been great, I will get a severe flare up of Crohn's which will in all probability result in surgery. This has caused me great stress, as I cannot find any information to substantiate this, let alone an alternative. I am a worry pot by nature, and do find myself pondering about the ifs, buts or maybe's. I would really appreciate any feedback or information that is available out there. Maybe, there is another crohnie out there that has experienced the same or similar. My crohn's affects me in the way that I have: 1. Severe bloating if I have eaten the wrong thing 2. Severe abdominal cramps 3. rectal bleeding 4. listless and lack of energy 5. Bowel obstructions 6. Have had 2 bowel ressections already 7. Have to be on a low fibre diet. I have been on prednisone for long periods, as well as all the other recommended drugs which did not agree with me. 6MP is the only drug that I could tolerate. I would appreciate any feedback. Many thanks Pamela pamjacobs@xtra.co.nz
My name is Leslie and I am 30 years old. I have (over the last 4 months regularly) had serious pains in my left side and lower abdomen, nausea, feelings of urgency to no avail, anxiety, night sweats, hot flashes, horrible cramps and lots of gagging. I recently went to the ER as my husband was extremely worried. They did a CT which shows "a thickening of my Iliem wall". My cousin has Crohn's and now they are telling my it's possible I have it as well. I go to the GI for the first time on Friday 10/21/05. I am extremely scared. I have such a wonderful life, a beautiful 1 year old daughter and the most wonderful husband ever. I am so terrified that something bad is going to be found. I keep thinking "it's not Crohn's, it's not Crohn's" but the more research I do the more it points to it. I would explain so much and I'm sure that treatment will make it better but...do I want that for the REST of my life? What are you gonna do?!? I don't have bad diarrhea but I do have it intermittently. I do have pains worse than contractions in my abdomen not to mention a constant achy feeling and I always feel "on edge" like my tummy is nervous. I am so scared. Any insight would be wonderful. Leslie law4usc@yahoo.com
I got this disease this year, when I was 28. I was supposed to graduate in May (finally), but I had to drop school, drop my job, drop my life. Like most people with this disease, I was in constant pain and becoming more and more emaciated. I was severely underweight. The thing that angered me a lot about it was the fact that when I had to go to the hospital (only time I would leave the bed) people would stare at me and say things like 'gosh, look how skinny she is', 'she probably has an eating disorder'. Sad part is, even a couple doctors insinuated I may have one!! Helloooooo... I do have to say, I would get "better", then much worse, and I wasn't responding well to my medications. Because of this, I started Remicade and Imuran. Lets face it, this is NOT an affordable disease (especially considering the Remicade). I still kept getting infections, fever, etc, so a doctor told me to take Cipro. That's the drug from the Gods (unlike Prednisone, the drug from hell...). It's the only antibiotic that can be taken for up to 2 years! And it works!!! My appetite come back with a force and I began gaining about 5 pounds a week!! My muscles are back and so is my hair. I feel much better now, except for the joint pains. Everyone, look into Cipro (not Levaquin or others, those cannot be taken for long periods).
Hello, my name is Whitni and I have had crohn's disease since the age of 13. I am now 22 and consider myself a trooper for what i have had to go through. My first symptoms were the typical flu symptoms. I was told i had the flu for about a year then my doctor asked the question that led to my journey of being diagnosed with crohns disease. That question was " anyone in your family have a disease called Crohn's". My mom raised an eyebrow and said "yes, her fathers cousin!" I was sent to a G.I. doctor that next week were they ran a blood test called sed rate. when my sed rate came back 72 my new G.I. doc at the children’s hospital immediately scheduled a colonoscopy. I was diagnosed two weeks later and in the hospital. I was dangerously malnourished and placed on TPN. I was scared out of my mind. But as the years past I became so familiar at the hospital. I perferated on my fifteenth bday and was rushed into emergency surgery were they resected. A week after being home I was back in the hospital with an abscess the size of a grapefruit. they drained that and put me on heavy antibiobotics. Then at 18 years old I spent a long 62 days in the hospital and got an ileostomy bag. I gained a whopping 40 pounds from all the steroids. I finally had that reversed at 21. Then about two months ago I had a bowel obstruction and had another surgery. So I would say this is a lot to handle for a person my age. I have not figured out fully how to deal with this but I do the best i can. That is all I can do.
Hi, My name is Andrew and I'm 25 years old. I was diagnosed with CD last October just recently was released from a 3 week stay at the hospital this past week. I was having a really bad flare up including a weight loss of about 30 pounds, fever, night sweats, and severe abdominal pain before going to the ER. Once in the hospital I had two colonoscopies and too top everything off the doctors noticed lymphoma in the biopsies taken from inflamed tissue. The doctors needed more tissue sample to determine how to treat the cancer and a fistula had formed between my sigmoid colon to the small intestine so surgery was the only option. The surgeon ended up taking out 3 different sections of intestines including the fistula. After the surgery two patholigist studied the tissue removed and miraculously neither saw any cancerous cells. My oncologists says its one of the craziest things she's seen and that its possible that we did a biopsy of the very beginning of the lymphoma. I'm currently on short-term disability from my job at a big-four public accounting firm, which does induce quite a bit of stress, but am feeling amazing. I know that surgery is not the cure all and that Crohn's can come back, but by keeping faith I hope this will not happen. Hopefully everyone who suffers from this will maintain a positive attitude and keep their faith, which can be extremely difficult at times. Good luck to everyone.
I am 19 I was diagnosed with crohns in June I haven’t been well since I have been on steroids since and take a lot of medication I have been in hospital twice with this I just want to get it under control and have a normal day to day life.
Hi there, My name is Karen J. and I am 31 years old. I was diagnosed with Crohn's Disease when I was 10 years old but started having symptoms when I was 8 years old. As my family lived in Tasmania at the time, Crohn's was not heard of that much so that's why it took so long to diagnose. My symptoms included the usual stomach cramps, arthritis, "boils" on my legs amongst other things. When I was 17, after years of symptoms, I was rushed to hospital and had a total colectomy and as a result, an ileostomy. I was very lucky to make it through that surgery as I was "septic" after most of my bowel had disintegrated. Later that year, I had a reversal and since then have had four (4) more bags and my latest ileostomy is permanent. I ended up having surgery at least 2 - 3 times every year. My last surgery was a proctectomy and there is no chance now for a reversal. When I was 27 I had a total left hip replacement due to arthritis caused by Crohns but since then, movement for me has been so much easier. Overall, I believe I have coped reasonably well. I am actually now studying to be a Nurse and I am looking at specializing in stoma therapy. The last year has been the only time in my life that I have not been in hospital so I am enjoying life now. I must say though, it is not always easy and I do take anti depressants although no other medication as I am "over" taking tablets for this disease and just want my life to take its course now. I hope this helps others that live with Crohn's as well. Many thanks for enabling me to tell you my story. Karen.
I am a 22 year old African American women who found out two weeks ago that I have a CD. Actually I was relieved and excited that someone could figure out what was wrong with me at first I thought it was all in my mind and it was something that I could control. It all started when I was about 15 years old I started to have major abdominal pains after I eat and would have to use the bathroom right afterwards. I began to loose weight really fast when I was 15 I never weighed more than 115 and then I got down to 78lbs in two months so of course my parents noticed and I was in and out of the doctor for about a year and they couldn't figure out what was wrong with me. The doctors said that I was starving myself and that wasn't the case. after a few months I gained my weight back and just stop going to the doctors and learned how to cope with the pain. I recently graduated in may from college and I lost the weight again and decided to see my doctor because I didn't understand why this was happening again. so my doctor suggested that I go see another doctor. I had a colonoscopy done and that went well. and they told me that I have CD. currently I am on Prednisone and Asacol. and I have gained 7 lbs in like a week in half. I do have the moon face but I have always had chubby cheeks so that doesn't bother me. the great thing is I no longer have pains after I eat. yes I still have pain but its not as bad as it use to be. but the only thing is I feel like a factory with taking 16 pills a day plus my vitamins. does anyone know if I will always have a moon face? but overall I try not to get stressed or let anything bother me. but if anyone has anymore stories or info let me know b/c I am new at this even though its been with me for so long undetected. divaniki@hotmail.com
I am a 17 year old teen. My mother has Crohns. She was told she had Crohns after my 22 year old sister was born. As long as I can remember my mom has been in and out of the hospital. When I was little I never understood what was going on. Recently my mother went back into the hospital. This time it really hit me hard. This time I understood what was going on. My dad wasn’t going to lie to me anymore. He said I was old enough to understand. My mother was in the hospital for 3 weeks. You never know how much you love someone until they are not there. I love my mom. Everyday I went to see my mom, I would leave crying. It was so hard to watch my mom sit in that bed and be in pain. My mom is at a point now were their is not a medicine strong enough for her. She uses steroids and other things to keep it under control. She tried Remacade about 3 years ago. She was allergic to it. Her doctor told her that their is a new medicine coming out and it might help her. I hope so!!! Jena Scott- Temperance, MI
MY symptoms began on July 10, 2005. I was first diagnosed after an entire month of stress, worry, agony, a hospital stay of four days- with a condition usually only common in children called HSP Vasculitis. I had and still have a rash that outbreaks on parts of my body, beginning at my feet. The rash, I was told- is broken blood vessels. I had an allergic reaction to Sulfa, a common drug used to treat UTI and bladder infections. When the rashes turned to pain in my abdomen, I was told it was common. Until the pain kept worsening and worsening and finally one day, I couldn't handle the pain anymore. My mom stood and watched the doctor look at me, curled over in the fetal position crying because the pain was so bad, and send me home with nothing but a sedative that turned out to the something that can't even be prescribed in Montana, where I am from. I ended up, once again in the ER, where I was pumped full of Dilaudid and Phenegren, which seem to be the only two things keeping me comfortable. The cramps kept coming back and coming back and my Rheumatologist who diagnosed the HSP finally realized, hey, this has reached something on her insides. I am also on Prednisone, I have been up to 60 mg a day, down to 15 mg a day, currently at 40 mg daily- it's making me depressed and gain weight (which I guess makes me one of the lucky few). After my last hospital stay, a Colonoscopy, CT scan, and Endoscope, they now know I have an ulcer in my small intestine and believe I also have Crohn's. The progression is unknown because the doctors who are treating me only have me on Prednisone, Phenegren, and Dilaudid for the pain. I feel like I am only getting worse. After reading these stories, I am so scared. I am 20 years old and a single mother of a beautiful and very energetic two year old. I also feel like I have no energy daily, and it scares me to think I can't be there for my daughter. The only thing that can get me going in the morning is my pain medicine so I will be comfortable. My dad spent $500.00 on a remedy he found online that is supposed to treat my conditions. I pray I never need surgery. I really appreciate everyone's encouragement and stories.
Hello my name is Wendy. I am 21 and much like a lot of the stories i have read on here, I went through the same 3 months of excruciating pain to find out that I have Crohn's disease with ulcerative colitis. I had 2 bladder and kidney infections and a lot of lower back pain and up to the shoulder blades. I had a ct done at my request and they found a thickening of the walls of my intestines. After a colonoscopy they found the ulcers and took a biopsy. That was 8/22/05. I am on Asacol 9 pills a day at 400mg a pill. that's seems like a lot 3600mg a day. Is that normal? Im confused and scared. I see the doc on the 14th of September. Hopefully i will get a better understanding of this all. Thanks for listening.
I was first diagnosed with crohns when I was 20 years old. I was sick for about a year before they finally figured out what the problem was. I took steroids and pentasa for about 6 months before my symptoms started to subside. I was 22 years old and 6 months pregnant when I started showing symptoms again. I started losing weight, and the pain was so intense that I went into preterm labor. I was put on medication to stop the contractions and was also put on bed rest for the remainder of my pregnancy. The doctors finally induced labor at 35 weeks of pregnancy. I only weighed about 100 lbs and my baby had stopped growing. My son was a healthy 6 lb baby, but I had a long road ahead of me. I was taking percocet 10/650 every 4 hours, 24 hours a day, and had tried every medication know to man. I only weighed about 85 lbs when I decided that I was going to try surgery. The surgery went great! I wish I had done it sooner. I am now 25, and have been in remission for almost 2 years!
I was diagnosed with crohn's disease back in 1985. I was 10 years old at the time. I was having extreme stomach pain, my energy ran very low, i was so tired and kept running to the bathroom alot.My mom took me to the family doctor where he told us that i just had the flu. Couple more weeks went by we went back to see him again he of course didn't know what it was so he sent me to a specialist, who then put me on a non wheat diet thinking that was the problem but of course it wasn't and he didn't know what was wrong with me either in the mean time I’m getting sicker and losing more and more weight so i was checked into the hospital. they ran test after test after test until they told me i had crohn's then i was transferred to the children's hospital. From that day on it just seemed to be one thing after the other. I was taking salazapirene every day plus iron pills they put me on prednisone as well. In 1990 I had my first surgery part of my intestine was removed and i was in the hospital for about two months. Eight months later I had my next problem, I was constantly running to the bathroom throwing up. I wound up getting checked into the hospital due to a blockage from the previous surgery. Which meant i was back in the surgery room once again. A few years later i wound up getting fistulas which are the most uncomfortable and painful thing. i wound up going on metronidazol for two years. i just kept getting sicker so i was put back on prednisone as well. After awhile my body became addicted to it i tried to get off of it but wound up getting withdrawals. It was to the point i couldn't get out of bed. i was put back on them again i wound up having to stay on them for a year and a half. In 1997 i had my third surgery, i was able to get off prednisone but i also wound up getting an illeostomy. I was in remission for awhile after that until 3 years ago i started experiencing the pain again. At first i was told it was my gallbladder because they ran tests and found stones. So what i thought were gallbladder attacks really wasn't. I didn't find that out however until after they took out my gallbladder in 2004. A month after I got another "attack" wondering how that could be i went back to the doctor and he told me it's not my gallbladder. In the end it was my illeostomy, it had narrowed causing me to have blockages and extreme pain every time i ate. I had another surgery January of this year to correct that and so far everything is good. I'm back in remission and keeping my finger's crossed. Good luck to everyone else out there. angie
I was diagnosed with Crohn's disease at 47 years of age. The disease presented itself rather dramatically with severe bleeding from the bowel (need transfusion). The only pain I felt was in my back, so diagnosis was difficult. After one year of every scan, probe, etc. one can imagine, and after two more life-threatening bleeding episodes, I was finally diagnosed. Surgery was performed with hopes for a remission, but the disease was back in only three months in all it's vengeance. I was put on a high dose of prednisone, only to land in the psychiatric ward with a prednisone psychosis (which means I went completely off my rocker!) At any rate, 18 years later I am taking 6-MP, Pentasa and Levbid and an anti-depressant and remain in remission about 80 percent of the time. I have not needed any more surgeries and do not have any complications except episcleritis (eye inflammation) occasionally. I do have to be careful not to become stressed or overtired--sometimes hard to do. The big stresses (death of loved one, divorce) always affect my gut and I usually get a flare-up. When I flare I up my Pentasa and go on a clear liquid diet for a day or two then slowly add some banana, cream of wheat, bland and soft foods. When I am in remission I can eat almost anything except corn products and nuts and dairy products. I have a very caring gastroenterologist and a good primary care physician...and a supporting and loving family. Cyndijane
Hi Everyone, I don't have crohn's but my little brother a year ago found out that he does. Since then we've seen him with many ups and downs. But recently he needed to surgeries that nearly devastated us. He is very brave, and prior to this he had never even been admitted to a hospital. We've seen him very extremely high fever. And for the first time in my life I saw my brother cry because he was so down after his surgery. He doesn't know why this is happening to him and sometimes he asks God what he did to deserve this. Every day, week, month etc... we all pray that this disease goes into remission. And just when we think that it does than something else happens. I wish they would find a cure soon! Anbul
Hi my name is Kelsie and i am a 12 year girl from Ohio. I was told that I have crohn's with ulcerative colitis just about a month ago. This all started in June 30. I went to he hospital after two days of server pain in my right lower side. they did blood work and i had to get a CT done also. From the CT they thought my appendix had ruptured so they did an emergency surgery. When they went in they found that it wasn't my appendix it was something else. So the closed me up and i had to say in the hospital for three or so days. I was in the hospital over the fourth of July and watched the fire works from the hospital playroom. After i left the hospital they sent me to see Dr.Gohil a pediatric gastroenteroloist. After he had seen me he said that he would like to do an upper and lower scope. So after I had left his office is was back to the hospital. For two days they cleaned me out and then on then the next day was the scope. He then said that i have crohn's. He took some biopsy and when he got those back he said that I have the ulcerative colitis also. He put me on prednisone. I started to take the medication and after a weeks or less or it I was having really bad side affects from it and after two or three weeks of being on it i had to go to the hospital again. He ended up taking me of it sooner and faster then he had planned. A week past and I have been having side pains again so yesterday i had to get another colonoscopy done. They took me of my other medication he put me on to see if that will help. And i have spent my whole summer in and out of hospitals and doing nothing. And they still don't no why right now why I’m having the side pain.
I have the worst kind I have both of them crohns and colitis with I.B.D. I stay so sick that it is hard for me to live sometimes. I have to children and a loving husband and it is hard on everyone. I take 6mp and lots of it 150mg and It has been nearly 5 and a half years with no remission in sight. I have diabetes because of this evil invasion on my body. I take Metformin, Avandia, Diovan,and Vytorn. But I don't dare give up. Thanks for listening to me Kristie
Hi, my name is Carla, I am almost 27. I was diagnosed in April this year with crohns disease. I wasn’t at all surprised as my stomach has been funny for about 6 years. I was constantly going to the doctors with the same list of symptoms, just to get told the same thing every time....that my symptoms are strange, sorry don’t know what is wrong, then finally over and over again I was told it was IBS and to get on with it. I did try various sorts of pills which didn’t help. I went for a few tests, but nothing was shown. I didn’t want to give up just thinking it was IBS as I knew it most be something else as it was there all the time and starting to get annoying after about 6 years. I kept on going back to my doctor who in the end laughed at me and said it was all psychological!!!! I saw another doctor as I didn’t want to see him again....soon enough I went for a colonoscopy....Crohns disease in my terminal ileum. I was put on prednisolone (corticosteroids) then soon after pentasa (mesalazine). For a while things were a little better, but not for long. Then the same symptoms were there again. Stomach pains everywhere around my stomach and bowels, sickly, funny stomach feeling, lots of retching, sometimes a little sick, funny stools, and my bones in my legs and arms hurt like cramp but worse etc.... I have kept a journal since I was diagnosed which helps to see if anything triggers my symptoms...at first my symptoms were always there the same, but now I notice I can not eat spicy food, onions, too much dairy, acidic sweets, too much fruit, sometimes coffee, or too much bread. If I get stressed my symptoms worsen by means of feeling sick and pains. I f you don’t mind me asking, does anyone else get a really sore bottom even when your stools are not too runny? I do a lot and its really annoying, it will bleed a little and feels like it is cut or scratched inside. Anyway enough of that.. What I find strange considering I have crohns is that I don’t get diarrhea all the time and I have never bled much from my bowels, just a little streak here and there. My crohns disease is mild, but even so its annoying. I haven’t yet figured out which medication works best. I am on another course of steroids as my symptoms are the same all the time, and will probably be starting azaphioprine soon. I don’t like the idea of taking soooo many pills everyday, so has anyone else tried any natural remedies? Thanks for reading my story, and good luck to you all, hope you all get better soon. Carla.
My story is further down the cue. I wanted to remind those of you who are on Prednisone that this is not a drug you can quit cold turkey! I was on about 20 mgs/day, ran out and didn't get it refilled immediately. Three days later I was back in the hospital. Then I went on 40 mgs/day. I carefully tapered off--over 10 years! (You probably wouldn't need to do so that long) I would drop down one pill per day...if I felt pains returning, I'd add it back, then a couple of days later drop HALF a pill a day. Eventually I got off of it. But PLEASE take your time... Bob K.
I am 52 year old and have had Crohn's since I was 26 years old. After a major flare up was controlled by medication I believed that I was "over it" - no one told me that it was a lifelong disease! In the next year I had anal abscesses surgically removed. Very painful! No one had heard of the disease and I began to try to find out as much as I could. When my children were five and six years old the disease reared its ugly head again. The pain was excruciating, I couldn't eat, I lost so much weight and I began the process all over again. My GP told me that I was "overdoing" things, that I had an ulcer and treated me for the ulcer. I was back and forth to his surgery for weeks before he would refer me to a gastroenterologist. More and more tests, with 2 young children in TOW. Eventually the pain was so bad that surgery was the only answer - a fistula had developed. Living in a rural area in Australia meant that I was hospitalized 300km from home with a husband who was trying to continue working and to look after 2 children and to visit me on weekends. Recuperation took many months and sometimes was quite frustrating. I decided to try to HELP others with IBD upon my return to my home town by setting up a support group for all types of IBD. It has helped me to understand the disease more too. Now my 20 year old daughter and a nephew have also been diagnosed with the disease, so there must be a bad gene in there somewhere! Although my Crohn's is now under control - touch wood- I have Irritable Bowel, arthritis developing and there always seems to be something happening. BUT...life goes on and there are much worse things than this. So...keep smiling.
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