My Crohn's Story

I was diagnosed with Crohn's Disease on August 27, 1998. I had never even heard of the disease before then, and I had no idea what to expect. The following story is mine, before and after I found out what was making me so sick.
2/15/99 Update
2/21/99 Update
11/11/99 Update
8/23/00 Update
3/28/01 Update
4/5/01 Update
2/26/02 Update
6/2/03 Update

It was the summer before my senior year of college, my last real summer. It started out great, I had a great job working for the state of Massachusetts, and had big summer plans with all of my friends. Starting in July, I started feeling kind of run down, and really tired all the time. I developed a weird allergic-type reaction to corn, something I had eaten all my life. Other foods started bothering me and I started to feel sick after almost every meal. My ankles started giving me problems. I would be in pain walking around the office all day. Day by day and little by little the pain got worse. Then, one Saturday night, my right ankle swelled up so bad it looked like I broke it. My finaceť took me to the emergency room at the local hospital. I couldn't even walk on the ankle at this point. After lots of waiting and a few x-rays, the doctor could find nothing wrong with it. He asked if there was a history of arthritis in my family, and I said no. He gave me an ace bandage and some crutches and sent me on my way. The next morning when I awoke, the swelling was gone, it went away just as fast as it had appeared. But, that didn't stop the pains. Now, my left ankle was bothering me, as well as my wrists, knees, shoulders and fingers. I felt like an old lady, I could barely walk around, and I was only 20! My joints started to not only give me great pain, but were swelling up. I started feeling worse and worse healthwise too. I had to stop working and I felt like I had the flu, and was having trouble keeping food down. I had terrible abdominal pains and was having trouble staying awake during the long hours of the day. I went to see doctor after doctor at the local hospital. I was there once to twice a week getting blood tests and giving stool samples. I was eventually referred to an infectious disease doctor because it was thought I may have Lyme Disease, I had all those symptoms. After a few tests, that was ruled out and the doctor said I had an enterovirus with reactive arthritis. There was no medicine she could give me, we would just have to let the virus run it's course. I was told not to take ibuprofin for the arthritis because I was having trouble keeping things down and also told not to take tylenol because my liver counts were a bit high. So, I was stuck with this awful pain in my joints that was so bad at times I had to crawl up and down the stairs, if I could walk at all. I went to see this doctor again a week later and she prescribed relifin to me for the joint pain. This seemed to help. All of the sudden I could walk again, but I was still not feeling much better in other ways.

I tried to go back to work, but was still feeling too sick to make it through a whole day. I started to get what felt like kanka sores in my mouth around this time too. They were everywhere, on my tongue, gums, inside of my lips, and the back of my throat. They covered the inside of my mouth and were so painful that I could barely swallow water, let alone anything else. I started to drastically lose weight. In between July and August I lost almost 45 pounds. The first week of August, I went to a log cabin in New Hampshire with my parents. We thought maybe getting away and relaxing would help me feel better. I had been feeling a tiny bit better that week and thought it would be fun. I spent most of the time there sleeping, and I could still barely eat. My mom's sister is a doctor and we called her to see if she had any ideas to dull the pain of the kanka sores. If it wasn't a soft, bland food, it hurt to eat it. She suggested swishing my mouth out with a mixture of maalox and benedryl. Amazingly, that helped a lot. It didn't taste that great, but it did help. I also found that anything that would coat my mouth would help, like milk. Or, in my case, with a developed lactose intolerance, lactaid milk. The acid in tea also seemed to dull the pain of the sores. With this found out, I was able to eat a lot more, my problem now was, I had absolutly NO appetite. The week went by and I ate a little more, felt a tiny bit better, but was very worn out.

Returning home, I thought things would start to get better, and for a while, they did. I was feeling slightly better and the doctor told me I could return to work part time. I started working from around 2 in the afternoon until 5 in the evening. I even went out with my friends at nights, something I had not done since June. Although I did have a slight breakdown when I sat down on a curb and could not get myself back up because of the pain in my knees. Mornings were still tough on me and I was still sleeping a lot. Work was hard too because fingers ached from the arthritis when typing too long. The following week, I experienced some rectal bleeding. At one point so bad, the entire toilet was filled with blood. The abdominal pains were getting real bad and I was feeling sick again. I called the doctor and she said I should go see a Gastrointestinal doctor right away. I made an appointment for the following day. That day I met with yet another doctor and told him the whole story. I had thought the bleeding was just hemmeriods, which I thought I was getting with my period. I wasn't really too concerned about it. He did a rectal exam and said there were no hemmeriods there, but I was quite inflamed. He left for a minute and returned with another doctor. They told me that I should have a test done to rule out Inflammatory Bowel Disease. They didn't think I had it, but had to rule it out and find out what the bleeding was. I made an appointment for the following week for a flexible sigmoidoscopy.

Preparing for the test was not fun. I had to clean out my system and could not eat real food. I also had to drink this lemon soda type stuff that tasted disgusting and then made me throw up. I was feeling awful, and didn't want to even go through with the test, I felt it was unnecessary. But, I went for the test because I knew I should. And, there was nothing to worry about anyways, they weren't gonna find anything, right? The nurse was really nice and assured me that it was a fast test, only 10-15 minutes, and it was not painful. Unfortunatly, I was so inflamed that it was a pretty painful test, and very uncomfortable. The doctor took some biopsies because I was bleeding inside. They told me from the looks of things that there was something wrong, I may have Crohn's Disease. They told me to get dressed and come to another room, they got my mom from the waiting room and the doctor sat us down. He said, although we had to wait for the results of the biopsies, him and another doctor felt pretty confident that I had Crohn's. I was in shock, what did this mean, what was it? I had never ever even heard of it! We were to come back to the hospital a few hours later to talk with a specialist. We returned to the hospital and met with the doctor I had been seeing and the Crohn's specialist. He explained the disease, showed us a bunch of booklets and books and all sorts of things. I was suppose to be returning to school that weekend, and the doctors were not thrilled with that idea. They wanted me to stay home so they could monitor me while on medicine and do some more tests. I managed to convince them otherwise. They told me that I had to have an upper GI before I left for school so they would know if the disease was there. I set that test up for the next Tuesday. Unfortunatly, my parents would not be in the area then, they had to take my younger sister to Maryland for her first year of school. So, I was going to have to go alone. Again, I could not eat before I went and I was not feeling well again. I went for the test, they make you drink this white, GROSS tasting chalkey stuff which coats your insides so they can take x-rays of them. The test takes two to three hours to complete, they take pictures every half hour. My fianceť's mother and his neice came to sit with me about an hour into it. I was grateful for that because I was feeling worse and worse as time went by. We played cards and drew pictures. I came back from one series of x-rays, feeling particularly bad, and then proceeded to throw up the chalkey stuff. After two more sets of x-rays, I was allowed to go home. I was feeling too terrible to drive so, I went to my fianceť's house and slept there for a while.

That day, I started taking Prednisone. A drug that I have a love/hate relationship with. I love it for the fact that my joint pains went away, and the swollen joints started to subside. The bleeding stopped and I started to feel better. But, the side effects are pretty crappy. I am getting what they call a "moon face", and gaining a bit of weight. My appetite has skyrocketed, I can't get enough food in. I have some insomnia and terrible mood swings. I am full of energy though, but the 40mg a day is a lot. The high dose of the steriod gives me so much energy that I am often shaky.

It has been a few months now, and here's what's been going on. Prednisone started to stop working for me, so, for a while, I was put up to 60mgs. a day. During that time I gained about 30 more pounds, and the moon face got bigger. I am just filled with fluid everywhere! I was then put back down to 40mgs. a day and told to stay away from salt. This is proving to be a very difficult task in a college dorm!! When I went to the doctor last week, more has developed. I have been on prednisone for so long that it has risen my blood pressure to a point where they're worried I'll have like a heart attack or something, so, I am down to 30mgs. this week, and 20 next week. He also seems to think I am in remission, but we shall see, I don't think so. I am also taking a water weight/BP reducer medication to help with the like 80 lbs. I've gained and the high BP. I am SO happy to be getting off prednisone, I hate this drug more that anything, but, since the reduction, I have been experiencing abdominal pains again, and starting to get diarrhea again. But, if the reduction in prednisone brings about a flare up, I may be getting a remicade infusion so, I guess we'll just have to wait and see what happens. But for the time being, my joints are starting to hurt again, and foods are bothering me again. All I want is to feel like myself again, it's been way too long!

The past week, things have not improved at all. I was put on 250mgs. of Flagyl a day, am on 20mgs. of prednisone and 50mgs. of that diruetic (accupril) for my BP. My blood pressure has gone down slightly, and I have lost 5 lbs. I wish I felt good though. I am getting the side effects of flagyl, have a headache so bad all I can do is cry, it hurts so much. Also experiencing an upset stomach and a strange metallic taste in my mouth, things I hear are also side effects of flagyl. If it isn't one thing, its another. I see my doctor on Wednesday, hopefully he'll be able to do something about all this. I missed a week of classes, and an going to have to drop one because I am feeling so lousy. Will this ever end?!?!?!

I have not updated recently and for that I am sorry. A lot has happened since February, so lets start talking! I am in my second senior year here at Syracuse U. I had to drop two classes last semester because of feeling so lousy. Because of the side effects of Flagyl, I was taken off it a long time ago. I am COMPLETLY OFF PREDNISONE!!!! It took until mid summer to come completly off it but I feel so much better without it in my system! The first few weeks I was completly off it I lost 5-7 pounds a week. That has now slowed to about one pound a week, I have about 60 more pounds I want to shed. One letdown, my really awesome doctor went through a forced resignation because he was too conservative for the hospital. I liked him that way....he did not put me on any meds until he knew everything about them. I don't know where he went and the hospital left me with a RESIDENT!!!!! So I need to be finding a REAL Crohns doctor soon. I am on a few medications right now: Cipro, Levbid, Accupril, and Lomotil. I am in an apartment this year so a little easier to stay away from BAD foods. But still, changing your diet after 20 years is HARD! I love fried food, salad, fresh fruit, lots of spices.....
I have had a few days I feel bad, but only missed a few classes this semester. I feel the worst when I am stressed over schoolwork! The semester seems to be going well though and I am hoping I will make it though the year without any major problems....the occasional abdominal pains are not that bad. Hey, I've gone through worse!

It's been a while since there has been an update on this page so, here it goes! I graduated from Syracuse University's school of Visual and Performing Arts on May 13, 2000.

It was a tough time and I went through another doctor but things are looking up a bit. I am on accupril, asulfadine, levbid and lomotil for the time being. I am not happy about taking 13-15 pills a day, I do not like being dependant on medication. I am seeing a new doctor on September 5. Upon moving back to the New England area, I needed a new doctor and hopefully he'll help me more than some of the doctors of my past. I am dreading the tests though and am hoping beyond all hope that I won't have to do them but I think with a new doctor it may be a neccessity. I am still getting ab pains and now my food allergies seem to be changing again. I don't feel like myself and am wondering when I will again. I am so use to the constant dull pain that I don't ever remember not having it.

On another note, I am working at a terrific job, and no it has nothing to do with art but I am loving it all the same. I am taking part in the New England Pace Setter Walk in September for the CCFA. I am excited about this and truely hoping there will be a cure for this disease sometime in my lifetime. But, until that time comes, I have to depend on meds and doctors, and hopefully the two will help.

It is still taking time to fully accept that I have this disease and often I go into denial and eat whatever I want and tell myself I am fine. I am getting better but I have still not fully accepted this and sometimes wonder if I ever will. I am doing better with everything but it is taking time. I know I'll get there eventually I just have to keep trying to eat right and stay Crohn's healthy!

Again, it's been a while since I have written so here's the latest! I am currently on Asulfadine, Accupril, Levbid and Lomotil...the same drugs I've been on like forever. I am still trying to lose all the prednisone weight because it can take as long as 3 years for that nasty drug to be fully out of your system! I am working out at a gym and trying to eat right which is helping to shed some pounds.

I have started a new job recently and it is wonderful! I am working at a management consulting company doing design and layout in the production department. This environment is a tad less stressful that my past job, and a shorter day so I think this will be a long happy relationship! I also think it will help with my health...because stress has seemed to cause flare ups so, less stress is a very good thing!

Personal life is going well too! I am getting married next year after quite a long engagement. He has been with me since before I was sick and he has been wonderful, more than anyone could hope for!
I have also found a great doctor...finally! I am feeling pretty good, I have my ups and downs but things are looking up. I am feeling well more often than not and it's a wonderful feeling. I will continue to update you all with my journal as I know from the emails I recieve that it helps all of you. Feel free to email me anytime ( hope you're all feeling better!!

I just wanted to make a quick entry because I have found something that I want to recommend to everyone with any form of an IBD. I have bought the book "The New Eating Right for a Bad Gut" by James Scala Ph.D. I have been following this book religiously for a few days now and I have not been sick ONCE! No diarrhea, no watery or bloody stools...nothing. I am feeling better than I have in years. It's only been a few days so I will update you all in a few months of following this lifestyle and we'll see what happens. The book is great and you can get it at any bookstore or at (there is a link to it in the books link on my main page). I think it's worth you're while to check it out. I hope all of you are feeling well, feel free to email me!

I have been getting a lot of emails lately wondering how the diet has been going and how I have been doing. That made me realize...I need to update! So, here's the latest from me :)

I try to follow the diet in the book as best I can (I still stumble from time to time but I think we all do) and it seems to help tremendously! Not as wonderfully as when I began but, I am feeing better these days. I am trying to stay away from fatty foods and red meat as they seem to be the biggest culprits in my ab pains. I don't always succeed in eating right but it's tough when your work orders food in a lot and there's a yummy cafeteria down the hall! But I think overall I am doing MUCH better which is shown in my overall health. I have had a few flare ups, little ones mostly, but I am realizing that this disease is not all I am and it doesn't have to rule my life, I can live with this if I can keep doing the right things. Unfortunatly, that is still hard at times but, such is life I guess.

A bit of sad news...I am no longer engaged. After 7 years, he called off the wedding 9 months beforehand so...if anyone needs a wedding dress and veil, I got one still with the tags. I guess we really were too young, just like everyone said...things change when you graduate college, all of the sudden everything is "real". Also at that time, my parents announced they were getting a divorce after 25 years of marriage yet, we are all stuck in the house until it sells....fuuuuun. That all happened in September and needless to say, I had a HUGE flare and missed a week of work. I also suffered from what I now realize was depression...almost lost my job in fact! I have moved on and am trying to understand everything and accept that I have no control over these things. I do think my break up hit me a lot harder than my parents. But, life does go on and they say there's plenty of fish in the sea...

We are working on being friends and that helps some but it is a hard thing to get over. I have been on a few dates but I don't think I am really ready for that yet...I think I am still a little in love with my ex. Hopefully, that'll pass because I really did like having someone and would like to find love again. Geez, I sound like I should be on Oprah or something!! :)

Good news, I am moving into a new apartment on March 1, this Friday! In fact, I should be packing right now but procrastination has a hold on me! I have had a lot of fun buying things and getting ready for the move, this will be my first real place of my own and I am quite excited about it. Also things are going splendidly at work! I am loving my job at the management consulting company and being a production artist is fun. Truth...sometimes I hate my job but don't we all?? Overall, I am glad the first job out of college laid me off or I'd probably still be a receptionist! Everything happens for a reason...or so I am told. I guess that's it for now...if I think of anything else, I'll add an update! As always, feel free to email me for any reason..I love hearing from you all!

WOW! It's been so long since I have updated. Busy I guess! Well let's start with my personal life. Things are looking much, much better. I have been seeing a new guy for a little over 3 months now. His name is Mike and we met because we both work in the same office building. He's so nice, sweet, and wonderful and I am so in love with him! I can't remember the last time I was this happy. I am dealing better with my parents divorce, it's getting easier dividing my time between them...still odd but what can ya do. I am still working at the Management Consulting Company doing layout and design (although I seem to be doing more admin stuff as well which I don't care for) but I am still liking my job which is good. I am still living in the apartment I moved into around the time of my last entry, although my lease is up in August. Mike and I are thining of living together at that point but we'll see, I'd like to. :)

Healthwise I am doing ok, not terrific. I am on the same drugs I have been on for like the past year or more. I still get ab pains a lot and actually this week has been bad for some reason, not sure why. I still try to follow the book but you know, it's hard sometimes. I've lost more weight since my last entry but I still want to lose more from the prednisone all those years ago...I never worked hard enough to take it off and I would like to give it an honest try again. I am not huge (down to a size 12/14 from a 24 at my biggest with Pred) but I would like to drop to a 10...maybe even an 8 but that could be pushing it. I still have like a MILLION stretch marks..if anyone has any good remedies for those (deep ones) please email me at and let me know!! I am being sent for a colonoscopy sometime within the next month. I haven't had any of those tests in 5 years so I suppose it's time but I am not looking forward to it. I am hoping all is ok in there but whatever happens I can get through it. I dread the prospect of surgery and with the pains and the occasional bleeding I do fear at some point that'll happen but for know I am praying it doesn't.

I guess that's all for know. I'll update you all on the results of my colonoscopy. I hope you are all doing well. My new email is so please email me there if you'd like. Thanks for all the emails of support, it's much appreciated!!

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