Living+With+IBD

Personal Stories  Hockey players often take their health for granted. That all changed for me in 2005 when I started feeling sick.
 * __Fernando Pisani__** is a hockey player for the Edmonton Oilers. He, like 200,000 other Canadians suffer from a form of IBD. As a professional athlete living with a disease like Ulcerative Colitis is difficult. This is his story.

I knew something was wrong with me, but I was kind of embarrassed to see somebody about it. As time went on and I began to feel worse, I knew I needed to get well and had to see a doctor. I finally did and that’s when I was diagnosed with ulcerative colitis.

I was able to continue playing, but last July all the symptoms started coming back, only worse this time. I was going to the bathroom 20-30 times a day, losing a lot of blood and a lot of weight.

I was trying to stay in shape at the same time, but I couldn’t do anything. I was too tired and I had no energy at all. I lost about six pints of blood and I even developed diabetes temporarily because of all the medication I was taking. It was awful.

I could barely leave the house and when I did, I had to know where the nearest bathroom was. Just walking up and down stairs was exhausting for me.

In the back of my mind I was thinking about hockey and what was going to happen to my career. I was in touch with our trainer, telling him how I was really not feeling well, but they didn’t know much about my situation and what we could do to make it better.

Eventually, when I was feeling my very worst, hockey became the furthest thing from my mind. I was 40 pounds lighter than normal and it was pretty scary. I normally play at 205 pounds, but I got down to around 165.

Every time I looked at myself in the mirror, I was just skin and bones. I can joke about it a little now, but it was like I was staring at Mr. Burns.

All I wanted to do was get healthy again. You play 80-100 hockey games a year with pre-season and the playoffs and you start to feel invincible, then something like this comes along and knocks you out.  My doctor decided to put me on a drug called Remicade and that’s when things finally started taking a turn for the better. I started to notice small changes and it was the first positive sign I had seen in such a long time. I started getting better and better. It was such a relief.

I was finally able to eat food and drink again. It had gotten to the point where I didn’t even want to eat or drink because everything I put inside my body went right through me.

Once I started feeling better, my thoughts turned back to hockey. Of course in terms of training, I had to start from scratch.

I went from lifting a lot of weights – bench-pressing 230 pounds – to just using the bar (45 pounds). It was a little frustrating at first, but I had to start somewhere. I had to take baby steps. I didn’t want to push myself too hard in case it had a negative affect. I felt stronger with each passing week.

I started taking Remicade in September and I was back on the ice in December. I look back now and it was remarkable the changes my body went through.

My first game back was against Anaheim. I wanted my return to be on the road. I was so nervous; it reminded me of my first NHL game. I just wanted to get out there and get it over with. The guys in the room were having fun with me, asking if I was nervous. I said, “Yeah, absolutely!” It was great to be back.

Today everything has stabilized. I go in for treatment every eight weeks and my weight is back to normal. Everything is positive. //Selected in the eighth round of the 1996 NHL Entry Draft, Fernando Pisani has played his entire NHL career with the Edmonton Oilers. The 31-year-old, who led the NHL playoffs in goals with 14 in 2006, missed 26 games during the 2007-08 season while battling ulcerative colitis. //
 * __Everyday People__** go through struggles with IBD everyday. These are just some of the hundreds of thousands of stories that are out there.

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.