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Crohn's Disease
Stories



About living with Crohn's

Keiths' Comments
Hi Jennifer, I've just read your excellent website. I owe you a huge THANK YOU! 2 years ago when i was really struggling with Crohn's i read the research of Dr Danhof & that led me to Serovera. After all the years i had lived with CD i was really sceptical that Serovera would really help me. I played your testimonial many times before i decided to try Serovera but you helped me decide to try it. That was the day i made the best decision of my life. Serovera has given me the complete remission from CD that steroids,6mp,azathioprine,pentasa & the 9 operations i underwent never did. Thanks to Serovera, after 21 years of living with CD, i now live a normal life.It has improved my health in a way i never thought possible. I'm sure you will understand - i feel like a new person, 100% free of crohn's. After i'd been using Serovera 6 months they sent me a message via facebook to ask me if i would like to do a video testimonial. I did that in April 2010 (i'm Keith 'in the uk'). Just recently i have set up my own website to tell my story of how Serovera helped me http://www.livingwithcrohns.org.uk I would love to think that by spreading the word about Serovera i can help stop other people going through the hell & agony i had to. Over the past few months i have been posting on one of the Crohns forums http://www.crohnsforum.com, i got a very sceptical reception but i have kept posting to try to help people. I think many see me as a salesman but in the last few weeks i have had a few private messages with people asking me about AMP. My hope is that somebody on the forum will try Serovera,have the success i've had and i hope word will spread and show people Serovera is not an internet scam. Advertising links are not allowed on the forum so about 3 weeks ago i asked the moderators of the site if i could put a link to my website in my signature which they agreed to (i think i'm gaining some trust). I can understand people being sceptical of a natural product which their Dr does not tell them about but the more of us who talk about it via the web hopefully some people will try it instead of those awful drugs. Thanks again for your video which helped me make the best decision of my life. Best Wishes Keith

Chris' Comments
Hi I was found to have CD in Feb 97, I went in to have my apendix out and WOW they cut me open and out came swollen bowel. I then had the lovely colonoscopy and since then have been doing only slightly better. I was on Prednisone and Pentasa but since I have not shown much improvement, I have now been put on a new (in canada) steroid called Budesonide. I take three pills a day and I am feeling much better. This steroid is better then others as it concentrates its effects at the Crohns affected area and not throughout the entire body. Almost nil side effects!

Sandra's Comments
Living with Crohn's isn't always fun, especially not when you're hospitalized, on lots of medications, miss a lot of school work or when you're on a diet or your doctor won't allow you to do certain things. But sometimes it's good to have a chronic disease, you always have an excuse for missing class or not participating in sport activities.

Jocelyn's comments
I have had Crohn's disease for over two years, but my doctor was too stupid to figure it out. She insisted that what I had was an ulcer and the pain couldn't possibly be as bad as I said. My grandparents were all convinced that I was anorexic and would beg me to eat every time I saw them. My own mother said they would never find what was wrong with me so I should just learn to deal with it. I was beginning to think I was crazy even though I had all these symtoms. Finally, after having a routine physical, I got help. My hemoglobin levels were so low that my doctor thought I had been in a serious accident. I was referred to a specialist who in turn referred me to another specialist. I was lucky enough to have avoided the colonoscopy, but I did have to endure the barium swallow three times as well as a barium enema. If my blood levels had not been so low the Crohn's probably never would have been found. I have tried taking prednisone but at only 20 milligrams I end up in the hospital because it really affects my stomach. The pain is unbearable. I roll around on the floor screaming and scare my parents and friends half to death. Even with this small amount of medication I can't sleep and I can't concentrate. As well these stomach attachs that I get can last over 12 hours straight of absolute agony. I take 10 Pentasa a day but I still have lots of symptoms. So far I have gained 10 pounds back form the 25 that I lost. If anyone has any advice or would just like to talk to me please e-mail me.

Erik's comments
I was diagnosed with Crohn's in 1992 after having sharp pains in my lower right side and began experiencing weight loss. As a weightlifter and a very active person, this began to seriously effect me. After going to several doctors, I finally found one who found out what I had, after serveral uncomfortable tests.

After my intial diagnosis, I was able to get back on track and gain my weight back, after losing 20 or so pounds. To some this might seem good, but for me, it was not. I began on high doses of Prednisone, which caused water gain and "moon" face. But soon I was able to get off of that drug. I am now taking Asacol and Salmon Omega 3.

I have been hospitalized twice for inflammation, about five days in each occurance. With medication, I was albe to keep my weight up. My two hospital stays occurred about four years apart. I have been able to avoid surgery and do not plan on getting one. I keep active, as my personal life and my career count on it. I watch my diet and avoid fiber type foods and some hard foods, such as chips, salad, etc.

With positive attitude and personal dedication, Crohn's can be controlled and someday be beaten. For those of you with Crohn's, try the Salmon Omega 3. It can be purchased in any health food store, but make sure you get the good stuff. I get mine from Nutrilite, which is probably the best quality you can find. If you can't find it, email me at EMK260@ix.netcom.com and I will see what I can do to get some to you.

Crohn's can control your life, or you can control it. See your doctor and experiment with different foods and drugs. Be positive and reasure yourself that you can beat it.
Good luck to all.


BKrantz255's story
I was diagnosed with Crohn's in the spring of 1990. I first began with random attacks of pain somewhere in the fall of 1989, but the doctors said that nothing could be done until the pain was constant. So, I endured the various times I was out to eat with friends, feeling very hungry, and when the food arrived I would get the awful pain and lose my appetite. Finally, I woke up one morning with constant pain. My parents took me to the hospital and they diagnosed it as appendicitis. They took my appendix out and the pathologist's report noted that it was not a "normal appendix" and there was a lot of inflammation in the area. So, I felt better for about a month, then the pain cam back. On my follow up appointments with the surgeon, he informed me it was scar tissue and that it would go away. It didn't go away, and I was finally referred to a gastroenterologist. After enduring the battery of upper GI's, lower GI's, air colon contrasts and cat scans, they still were not sure what the problem was. My Crohn's disease is located at the ileum (where the small intestine joins the large intestine and is very difficult to see on x-rays). So, the doctor scheduled a colonoscopy for the week after my finals. Well, my body couldn't wait that long and I began having bloody diahrrea. It was through the colonoscopy that I was finally diagnosed. My first doctor had me take Azulfidine and folic acid regularly and Prednisone during flare ups. However, the flare ups happened about once or twice a year. I was treated this way until the fall on 1995 when I graduated from college and moved away. In Jan. of 1996 I had a huge flare up which caused partial blockage. I woke up vomitting and couldn't eat. I was put in the hospital for two days and treated with steroids. My new doctor prescribed decided the old drugs weren't working and a new round of drugs consisting of Pentasa and Purinethol (6 MP) were prescribe. These have worked well for me. I have only had minor problems with my blood count as a result of the Purinethol, so we are still experimenting with the dosage. I've been very fortunate and have not really been hospitalized (just once) or that ill with the disease. It hasn't moved anywhere and hasn't really slowed me down in any of my activities (the doctors told me to avoid the bars in gymnastics). The only hassle is taking all the medication and explaining to people what all the pills are for. Sometimes I feel more like I'm 75 than 24. I worry about what it will be like when I get older and sicker. Maybe by then they'll have it all figured out!

Matt's story:
I was diagnosed in the Fall of 1989, two weeks before Thanksgiving. I missed over 2 weeks of school and had a rough time dealing with the disease. I have found through trial and error a few do's and don'ts. High fiber or course fiber is bad for your gut, it reall irritates your disease and can cause severe cramping. Try to have at least 1 salad a month for it helps to keep the intestines clean. I am lactose intolerant...no milk! I compensate by buying Dairy Ease and taking Lactaid capsules with it. I have found that I have to do both because I am really intolerant. Stress is a major factor in your disease. Keep levels low and figure out ways to just kick back and enjoy life when things get hectic.

I started on high doses of Prednisone & other drugs. In 1989, I was taking almost 30-40 pills a day. By watching my blood counts, especially my white blood cell levels, I am now down to 3 pills a day. I had a bowel resection in 1991 and lost 6 1/2 feet of my intestines including my ascending colon. I have cronic diarrhea now because of it.


Lyn's comments:
I was diagnosed with Crohn's in 1986 after 13 months of feeling lousy, losing weight and spending most of my time racing back and forth to the toilet. My relief at what was wrong with me at last having a name overtook my facing what the future held. I took the usual prednisone, a drug which apart from giving me the 'moonface' look causes me to perspire constantly, and causes my pulse to race, as well as Sulphadrugs which causes me to break out in red blotches on my legs (not a pretty sight).

The attacks continued, I had to give up work, and was told by the doctor I would probably never be able to work again. Then along came Dipentiumand Imuran, I weighed up the side effects and decided to go for broke. I have been back at work for the past 7 years and although there are the usual stays in hospital my body seems to bounce back each time. I had a serious attack two years ago, and had to face the possibility of an operation and gaining as my new companion a bag attached to my body. The thought did not thrill me, but at the last minute massive Cortisone treatments put everything on hold, mind you I put on heaps of weight. Since then I have been lucky enough to have been in remission, but I suppose all good things must come to an end and my disease has again flared up in the form of a recurring fistula which does not seem to be responding to the usual treatments. I am waiting surgery to hopefully fix this problem and am confident it will make a big difference. My daughter, Lisa aged 23, was diagnosed with Crohn's 2 years ago, luckily because of my past history, hers was not allowed to get too far before being treated.



About Crohn's and School


Sandra's comments
You miss a lot of school because of hospitalization and doctors appointments. Especially in high school, it's sometimes hard to catch up on school work after a Crohn's attack. It isn't fun when you always have to explain to class mates and teachers, why you're away from school so often or why you have to go visit the toilet so many times.

Joss' comments
Some of my teachers were really concerned over my weight loss. It was nice to know that they noticed and cared. Now, all of my teachers know about my problem and have been instructed to allow me to go to the bathroom whenever I request it. My guidance counsellor has arranged it so that I can get extensions on some assignments if I am particularly tired or stressed out. I got to write my exams in a separate room from everyone else so that I could bring in water, take breaks, and go to the bathroom when the need is there. Before I was diagnosed, I didn't feel comfortable asking for special consideration, but now teachers even suggest things to me. I think it is easier when they are sure you are really sick and not just faking.



About Crohn's and Parents


Sandra's Comments
When you're hospitalized after a Crohn's attack, and feeling really bad, it's often very comfortable and secure with parents by your side. But when you're in remission, or feel rather good, it gets a bit annoying with mom and dad always asking how you feel, if you've taking your medications, etc..

Joss' comments
When I was on my exchange in France, before I had got there, the teacher in charge had warned my host family about my disease and given them a list of foods that I wasn't to eat. Well, my host family wouldn't let me near any sort of fruit or vegetable and they asked me every ten minutes if I had been taking my medication. Also, they got very upset if they heard me get up in the night to go to the bathroom. They would question me about it later the next day! As well, if I am ever in the hospital and it ever gets back to France, my host family calls immediately to check on me. I'm glad they care but it's a bit odd.



About Crohn's and Work


CodyPuzzle@aol.com's story: I work in a prison...keys, locked doors, grilles...trying to find a bathroom that is private, has ventillation, and is close by and not in use is a nightmare to say the least. I can pretty well control it at work, but about 8:30am and 2pm, I'm off and "running." When you have to stand at a locked grille and then asked to be allowed in, only to find once you get there that the ONLY bathroom is occupied, is very nerve-racking. I have gotten to the point that I tell the officer at the grille (a new one every 3 months) that when I show up, I need in NOW! In an institution with 700 staff, about 80% of them now know my "problem." It was embarrassing at first, but now it's normal. I've lost about 30 pounds, and they've even quit asking why. Only 2 and 1/2 more years til retirement. Funny thing is, when I'm on vacation, my Crohns literally takes a vacation too.




URL: http://www.angelfire.com/ga/crohns/stories.html

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