I’m walking in the 2010 Take Steps Be Heard for Crohn’s and Colitis Walk with my sister.
Many of you know segsy. She has battled Crohn’s disease for more two decades. I’ve seen her sicker than I thought I could imagine. When she was her sickest, I promised I would do whatever I could to help find a cure. Happily, she has been in remission for several years. It’s amazing. And it’s thanks to the research that our fundraising supports.
Some of you may remember when my husband and I raised money and rode our bikes 210 miles to raise awareness. Well, my arthritis won’t allow me to do that anymore, but I am still trying. So this time, I’m walking.
Will you give to my walk? Click here to give today!4 years ago
I am 28 years old, and I was just told that I have Crohn’s Disease and Colitis. I have been trying to understand it. As of right now I just had my first treatment of Remicade and so far it has helped. I am also on Asacol I have to take it every single day. This medication is very expensive :( The Remicade infusions are also very expensive :( Supposedly this disease somehow runs in my family, but I do not know anyone with this. It was believed that my grandfather had it, however family members are still unsure. I just wonder, how does this happen…I am a young female who eats healthy. I think I have had this disease a lot longer, just because I have always had problems with my stomach, and never really knew why….anyway have any info on this I would love to hear. I want to raise an awareness for this disease…how come it is not talked about…why do I never hear about it until now? 5 years ago
My friend Judy died last week from complications of Crohn’s disease. I met Judy back in the Fall of 2001. I was at my worst and decided to join a support group sponsored by the Crohn’s and Colitis Foundation of America. judy was the support group leader.
Judy was a huge support to me and my husband. At our meetings, she even helped with our marriage, helped my husband to understand, be empathetic and have patience to handle what I was going through. In returned, I learned it wasn’t just me who had to handle this disease.
Judy never liked to talk about herself. She always listened to everyone elses story’s. Judy had multiple surgeries including a colostomy and reversal of it. She had been sick for years and never liked to ever showed she was feeling pain. But over the years, I guess we became closer and we would hear more and more about what she has gone through in her battle.
Judy lost her battle last Tuesday when she died in her sleep. I guess her body just gave up. She was 53 years young. She left behind a son 28, and her husband.
Thank you for listening. 5 years ago
A consortium of researchers from the United States, Canada, and Europe has identified 21 new genes for Crohn’s disease, a chronic disease of the large and small intestines. This discovery, funded in part by the National Institutes of Health (NIH), brings the total number of known genes associated with Crohn’s disease to more than 30 and advances understanding of causes and potential avenues to develop new treatments. Read the report and read more on recent research advancements from CCFA Chief Medical Advisor in the Boston Globe. 6 years ago
I have to drink 64 oz. of Gatorade mixed with a non tasting substance called Miralax. I drank 32 oz. and threw up most of it. That’s not very good.
I have taken 2 laxatives which were probably no good too and came up with the Gatorade. This is awful so far.
Now I have to try to down the other 32oz of Gatorade mixed with Miralax. It’s hard enough I do not even like Gatorade.
Then I have to take 4 more laxatives and something called phosphosoda mixed with 3 glasses of a clear liquid. All of tis before 10:00PM tonight.
Arrrgh! No wonde rI have been putting this off for so long. 6 years ago
my friend was diagnosed and is often uncomfortable and in pain – hopefully her treatments will make it better!!! 6 years ago
Researchers to test stem cells to treat Crohn’s
BY DELTHIA RICKS
Newsday Staff Writer
11:50 PM EDT, June 17, 2008
Stem cells may force Crohn’s disease into retreat, say Long Island medical investigators who are embarking on a pioneering analysis that targets patients who’ve failed other therapies.
Read more…6 years ago
My mom is the most wonderful human being in the world! I know everyone probably says this about their mothers but I truly know for a fact my mom is. She has had Crohns disease for over 18 years and I know there is other people out there suffering from this dreadful disease. It seems like not many people are aware of this and how many people have Crohns. I would like to raise awareness and raise money so one day there can be a cure for Crohns disease and everyone out there suffereing can live a normal, healthy life! 6 years ago
in remission for 5 years now. Today I have gone to the bathroom numerous times. Everything looks fine, but it still seems scary that something, after all this time could be wrong. It’s not fun having it weighing over my head. 6 years ago
Having Crohn’s Disease has certainly tested the patience of my husband many times. Let’s take our trip to New Orlean’s back in 2001. Mostly I was fine. But being in a strange city sure can put stress on. One time I made my husband get off the trolly because I “thought” I needed a bathroom. Another time we had breakfast at McDonald’s instead of a real restaurant because I was too nervous to walk the extra blocks that day. In addition, I made myself sit on the toilet so I a had flare up of my hemroids. It was awful.
My family and I are about to embark on our first family trip to Walt Disney World in Florida. My husband and I went back in 2002 together. Again, I was at the end of mild flare up and my hemroids were killing me the first days. SO much so I could not sit down at dinner time. I was afraid to go on the Safari adventure in Animal Kingdom the next day but I managed to survive it. Waiting on lines for the rides were awful. i was afraid of having to going to the bathroom once I got to the ride.
This trip, I am happy to say, I feel great! Everything seems to be in check and I can’t wait to get on that plain on Saturday. Wish me luck, bit I know I won’t need it. 6 years ago
I have stopped taking the drug 6mp since November. My doctor says I would not need blood work as often which is good. Mine came out fine by the way. However, I would still be due for that colonoscopy by June. Baby steps! Baby steps! 6 years ago
was canceled today. Rescheduled for next week. That’s ok b/c I am feeling good and it raining something awful outside.. It would have been such a Bitch to travel there today. 6 years ago
Does anyone know of any race events organised to run for this worthy cause? I was looking at doing a 5/6km run but wanted to do it as part of a larger body, as oppose to on my own. I live near Brighton but would be prepared to travel, so anything around the London region would be feasible! My best friend is a sufferer and I just want to do my bit, however if I’m going to raise money I’d like to be legitimate to all those looking to sponsor me….
Thanks for the help! 6 years ago
time schedule THAT colonoscopy AGAIN!
It’s going to have to wait until I get from vacation to Disney! 6 years ago
to add this cause to your face book page.
Thanks for joining! 6 years ago
The Spoon Theory I found under Tartsy’s goals. It has to do with someone who has Lupus which Tartsy also happens to have however, it can be put into relation with any chronic illness. It is very hard to explain to someone who has never sick what it is like to be sick. 6 years ago
So today I was impressed…. I received this email from MyPoints
Hurry! This Point Offer Expires December 10, 2007. Points for this offer can only be earned once. Get Your Points! Now that you’ve read the BonusMail, visit TreatCrohnsToday.com. Receive 5 Points. Once you get to TreatCrohnsToday.com, sign up. Receive 50 Points.
So I earned My points. But while doing that… I came across this guy, Ben. He says it like it is! 6 years ago
Today, before the start of the 1:00 pm football game, ESPN had a segment about David Gerrard, Quarterback for the Jacksonville Jaguars and his battle with Crohn’s disease over the off season.
It was a short piece, but highlighted how his illness took him through months of pain, losing 35 pounds and eventually resorting to surgery where 12 inches of his intestines were removed. 6 weeks later, the illness returned.
Gerrard is now on the same drugs my sister is on (I think) and is healthy. That stuff is pretty miraculous.
YOu can read more abut his fight here and here.
Then, you can watch him kick ass on the football field. 6 years ago
I was so impressed they focused a bit on Crohn’s disease. That young woman who was pregnant and did not know she was sick. It is very common for doctor’s to diagnose psycho-sematic illness with this disease because unless you know the symptems the right tests won’t be done.
I think I was a bit emotional. One of the reason’s I hesitate to have a second child is the imbalance of hormones. My last pregnancy seemed to have put me into remission. Another pregnancy could do the opposite but there is no way of knowing. 7 years ago
I just learned the walk to raise money and awareness for Crohn’s and Colitis has changed dates this year to June. It’s nice to know in advance to get a head start start. I hope to beat last year’s fundraiser. 7 years ago
via email. Found each other on linkedin. I mentioned I happen to have Crohn’s Disease. He works in the Pharm industry up in Boston. Will be interesting to see his reply. 7 years ago
One of the new known drug therapies that have helped many Crohn’s patient are immune suppressant drugs. An immune suppressant drug is a drug that lowers the body’s normal immune response. I am currently taking two such drugs. One mercaptopurine or Purinethol aka 6mp is commonly used to treat acute lymphocytic leukemia. The other drug is Remicade also commonly used to treat Rheumatoid arthritis.
I have been on both of the drugs for a very long time. Concerns arise of the long term effects of immune suppressant drugs. DOwn the road, could my body become so immune suppressed that I can’t ward off cancer cells ad the risk of developing lymphoma can be higher.
So I visited a specialist yesterday, one GI doc who has more experience with the use of these drugs in Crohn’s patients. He made me comfortable and confident that if I choose to continue the drugs it will only keep me in remission longer. If I chose to let go of one of the drugs he suggested the 6mp above the Remicade.
I have an appointment with my regular GI in November and I will discuss the possibilities with him. Being on these type of meds scare me and my husband too. But the alternative would be to wind in the hospital or possible multiple surgeries.
I am confident to be leaning towards cutting the 6mp and see what happens. 7 years ago
Being stress free has been a major factor for me. A big part of my decision on taking a new job will be the stress factor. The job I interviewed for yesterday has high quantities of stress. The most major one would be the commute. I so not wish to take any chances on getting a relapse as it has been over 4 years now of being in remission. 7 years ago
My walk team raised a heck of a lot of money. Especially with the help of my friends here on 43T. I just received a letter noting my company matched 50% and so $900.00 was sent to CCFA on Thursday.
Thank you again to everyone here who helped make that happen. 7 years ago
Here’s my story:
I was diagnosed with Crohn’s Disease in 1992. Crohn’s Colitis to be exact. At first my problems were mild. I thought I would just take my 12-15 pills every day and I would be fine.
I happened to be diagnosed quick because my mother was the office manager/medical assistant (Now retired) to my Gastroenterologist so she recognized all the signs. I went through all usual tests but of course the worst was preparing for my colonoscopy. I had to drink this salty stuff called GoLytely. A whole gallon of it. Who was she kidding? I called her in the office the night I was prepping for my colonoscopy and told her she can taste this S—T when she comes home. Then she could sympathize with her patients. No I did not finish all that I was suppose to drink but I was cleaned out enough. She did taste it and spit it out.
Once it was definite I had CD, I was put on dipentum and prednisone. The prednisone seemed to put me in remission for a bit. I managed to get every side effect from the prednisone. These included the night sweats, acne, moon shaped face, humungo appetite, joint pains and hair loss. I gained back the weight I had lost and then some. I bruise very easily and bruises show up on body from no where.
Soon, I managed to get off the prednisone and my doctor switched me from dipentum to asacol. I was moving from job to job to find my “Calling”. Finally in 1996, I got a temp job at a publishing company. This only lasted about about two months. I also met my husband this year. I finally found a job at a company I really enjoyed. I was so relaxed, my life seemed to be falling into place. I was feeling so good I even considered cutting back on the asacol. That was a mistake.
I got engaged in 1997. I was stressed from work and the engagement. I was sick and had to stay home from work about one month. I was dragged to catering halls and holding up the walls. I was so weak because I lost so much weight. I didn’t have to strength to drive a car. At least I got out. Fortunately I got better for a while.
I was put back on prednisone and meds and made a great recovery for my wedding in 1998. I figured I would just keep taking my meds and I would be ok.
Then, the summer of 2000, (we were living in our apt) I lost so much weight, I weighed about 98 pounds in my 5’4” body. I could not keep food down and decided to give up. My stomach cramps were so unbearable. I went to see my GI. He took one look with his flex sigmoid and saw how inflamed and bloody I was. I wound up in the hospital for 16 days which was an awful experience for me. I was put on IV steroids and liquid diet for a few days. I was so moody, batty and high strung from the steroid and the hospital I could not wait to get out. I drove the nurses and my family crazy. I was home for about 2 months recovering before returning to work again.
While I was home, my husband again was so supportive and very worried of course. I did not want to talk about it much. I also began to feel sorry for myself and was very depressed The “Why Me?” syndrome. I actually went to see a therapist for a while.
Well, my turning point of reality came the summer of 2001, July to be exact. We had just moved into our new home in May. I guess all the stress put me in another major flare up that summer. My blood tests showed signs of improvement but I knew I was getting worse. My GI scheduled another colonoscopy which I dreaded. Thank goodness pharmaceuticals came out with a new prep formula called soda phosphate. Just mixed it with 7-UP and I did not taste anything. My husband could not believe how fast I drank all my glasses. He made sure the bathroom was clear for me. The test showed I was a lot worse than we all thought. I managed to avoid going to the hospital. This time I was home for 2 months. I had to apply for disability and it took me some time to regain my strength and have the ability to go back to work. I made sure I ate, took my meds etc. but it was very hard. I was drinking Ensure twice a day and I got so sick of it. My body had absolutely no strength. I had a hard time just popping open a can of soda and I needed help getting off the toilet everytime I had to go to the bathroom so we put a chair in the bathroom for me so I could pull myself up. My leg muscles were so weak from the prednisone and I got huge knee cramps in the middle of the night. I’m talking pain that made me cry and I had to put ice packs on my knees.
My husband starting doing research on the internet and printing out pages for me to read. I was already a member of the CCFA but never really read the books my Mom had bought for me until then. I have finally learned to accept that I happen to have this disease and will have it for the rest of my life.
In January of 2000, I was laid off from my job after five and a half years. I believe it was due to my disease but it had been done so diplomatically I would have no case. I believe it was for the best anyway.
My doctor started me on Remicade treatments in August of 2002. The first two treatments I received were in the hospital. It took about six to eight hours from the time I got there until I got to home. I got nauseous the first time. The second time I threw up in the middle of the night. Finally I found a Rheumatoid doctor who takes me in his office. Now it only takes me two hours with the IV and I feel fine. I go for my treatment every eight weeks.
Once I was feeling better, I got more involved in the Crohn’s Colitis Foundation (CCFA) by going to fund raising events and joined a support group. The support group has been very helpful and has replaced therapy for me. It has helped for both myself and my husband. The group has helped him understand my situation much better. We have even made some nice friends.
In April of 2002, my husband and I took our first trip to Walt Disney World. We visited every park and did everything we wanted to do even though I was not feeling so well. We went on every ride however, there was the bathroom stop before and after each attraction. In addition, I got such bad hemorrhoids I could not sit down at dinner time. When we returned from our trip, I visited a colorectal doctor. He prescribed me suppositories and a cream which has helped a lot. No need for removal and he said it is not suggested for Crohn’s patients because it would be hard to heal.
In January 2003, I got a job through a temp agency.It is better hours, more money and less stress. How great is that? Now I am finally feeling what I call ‘status quo”. My husband and I wanted to try to start a family once I got off the meds of course.
We went to seek a second opinion and the doctor brought up surgery. Surgery? Again, I thought I would just have to take my meds and it would keep me better. Surgery was suggested only if I can not manage to get off the prednisone.
My doctor now prescribed me 6mp along with the Remicade in order to get off the prednisone. So my total meds to date each day are, 6mp, asacol, prednisone, omeprazol, and numerous multi vitamins. I have to have my blood taken every six weeks to test for any reactions such as my liver enzyme levels. Of course, I have such terrible veins that it is always grueling for me. It had been a roller coaster trying to get off the prednisone. I have been unable to get off of the prednisone for almost two years. If I can get off the prednisone, then I can think about having children. I was 32 years old after all.
All of this along with the great loving support of my husband and family. I do not know how he managed to handle my mood swings from the meds I am on. If anyone thinks PMS is bad? I can tell you more stories. But you would be moody too if you had things sticking out your butt and had to rush to the bathroom 6, 10, 15 times or even more a day. Many times I do not want to tell him when I am not feeling well because then he gets too worried about me. I do not like to place that burden on him but we manage. We have fought, cried and laughed many a time about this disease and he still sticks by me.
This day, I have been in remission for over 4years, thanks to my meds and the birth of my son.
Thanks for reading. 7 years ago
Got up bright and early for the run/walk. Brought hobbling hubby in tow. Poor guy. Really was frustrated that he couldn’t run. But it was a nice supportive crowd and the course was F-L-A-T flat. Which made it pretty good on the feet.
We raised over $100,000 and SEGSID’s team ranked 5th overall in funds raised.
Bravo to all of you! Thanks for all of your cheers and support.
HappyPhantom 7 years ago
Thanks so much Todd! I just checked my donations page. You totally rock. With the addition of Flirt and my Mom, I will be at $160. Woohoo! I am so psyched for the run. Will report back how I did. Todd gets the rest of my cheers for the day :)
Not too late to donate here. 7 years ago
You have brought me 25% to my goal. Yay! You get the rest of my cheers for the day. 7 years ago
I have not raised a dime for my 5K. Honestly, I understand. I’m certainly not as enthusiastic about this as I was for the bike ride. Perhaps I’ll do a bake sale or something. If you feel sorry for me that I have $0, you can donate here7 years ago
I have joined Shari’s Crohnies. I’m running the 5K instead of walking. It will be my second 5K ever. I hope I do well. I am training. And I’ve lost some weight, so I’m hoping it helps.
My goal is to raise $100 by April 28. You think any of you out there can help? I know it’s no 210 mile bike ride, but it’s a start :). Or, can you forward this on to other people you think might be interested?
You can visit my web site here to donate.
Thanks for your support! 7 years ago