Yeah, I have insurance and luckily, I have met my deductable this year, so it's 80/20 from here on out.
How much does one treatment cost?
I have to stay on top of my coverage because I have a pre-existing condition. If I drop insurance for one day, I won't get covered.
PBM
I've got my insurance papers that have my treatments as being $ 3200. every infusion. Luckily I work for a healthcare corporation & the hospital I go to covers me 100% after what the insurance pays. I am very thankful to have a good job w/ good health insurance!
I can't imagine not having health insurance.
I posted earlier on this thread about my battle with Crohn's and I want to keep this thread up at the front so i am doing my part.
Thought i'd update you all on my progress
I've been living with Crohn's disease for about 5 years now.
for awhile i lived by the whole pentasa and denying my health and not eating the right foods. Now people who say this disease does not take a mental strain on you is lying. It mentally drains you.
February of this year I made a bold decision let me try taking care of this my own way and not listen to the doctor's who want me pill popping until the day I die. I decided to go off of the pentasa and increase my vitamin intake. I also altered my diet and gave up alcohol, meat, fast food, chocolate, caffiene basically all the bad stuff.
Let me tell you I recommend this to anyone because it works! I haven't felt this good in about 10 years and i don't have the "bathroom" worry anymore when i am out.
I do love the foods and all that but i made the decision that I could not justify putting my health ahead of food.
I had what my doctor called a level 4 out of 5 on the crohn's flare up where my intestine burst and I had part of my colon and a foot and a half of my intestine taken out.
Everyone that has this disease please keep fighting it. It makes life tough that is true but whatever does not kill you makes you stronger and it actually makes you truly realize what is important to you.
PBM I hope all is well.......
I cannot wait until the Toronto show for PJ....the jam have pulled me through tough times and they are the most "real" band out there.
Thanks for reading and take care all of you.
Wow, you're doing this on your own is brave. I am tired of the meds but I have tried going off of mine with no luck, I got much worse. I just finished my Remicade infusions and they have not helped me. My CT scan came back showing nothing out of the ordinary except some cysts, he was trying to rule out other causes of my ongoing stomach problems. He's baffled that the Remicade didn't help or heal my ulcers. I see the doctor Thursday & I'm afraid he'll send me to Boston, at least that's what he talked about earlier if he could not "figure me out".
And, I think you may have said it in your earlier post, this does take an emotional toll on you. They want to put me on an anti-depressant, but I refuse right now as I tell them to fix me first! I am stubborn too & am so tired of meds. I must admit, I am very, very down. But I think if they start helping my Crohn's, then I'll see how the depression is.
Thanks for your progress report. I actually just got back from my Gastro. appointment. I am feeling really good right now. I don't know if it's because of the Remicade, my B-12 shot or what.
I just finished my Pearl Jam Video which is Crohn's related. I sent a copy to Spencer at http://www.pearljamlive.com and he is going to host it. Hopefully, he will get it by this weekend. I encourage all of you to watch it.
Oh and jgcartman2, I'm glad you are controlling your diet. I wish I could do the same...I'm working on it.
PBM
I am glad you are feeling better & I hope you keep on the up & up.
Can't wait to see the video you have put together!
And, I think you may have said it in your earlier post, this does take an emotional toll on you. They want to put me on an anti-depressant, but I refuse right now as I tell them to fix me first! I am stubborn too & am so tired of meds. I must admit, I am very, very down. But I think if they start helping my Crohn's, then I'll see how the depression is.
It's not something I like to openly share, but I went on anti-depressants about 3 years ago. After being diagnosed, I got an abcess, then my colon resecion, and then I lost my job. I was in a bad place for a while. I just didn't have the energy to do anything.
They would put me on steroids, which was great for the short term. However, I would end up gaining 15-20 pounds.
It seems like the Remicade is working. I decided to wean off of the Anti-depressants a couple of weeks ago and I am doing great.
I also get a B-12 shot every month. I think that helps too.
Plus, just having energy to do stuff helps tremendously. I like being busy. I think my depression came on because I didn't have the energy to do the things I wanted to anymore.
Give Remicade time...hopefully it will work out great for you.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
It's not something I like to openly share, but I went on anti-depressants about 3 years ago. After being diagnosed, I got an abcess, then my colon resecion, and then I lost my job. I was in a bad place for a while. I just didn't have the energy to do anything.
They would put me on steroids, which was great for the short term. However, I would end up gaining 15-20 pounds.
It seems like the Remicade is working. I decided to wean off of the Anti-depressants a couple of weeks ago and I am doing great.
I also get a B-12 shot every month. I think that helps too.
Plus, just having energy to do stuff helps tremendously. I like being busy. I think my depression came on because I didn't have the energy to do the things I wanted to anymore.
Give Remicade time...hopefully it will work out great for you.
PBM
Hi there!
It's been a while & I hope you are on the up & up!
The Remicade didn't work w/ me so the doc did end up putting me on Prednisone which went very badly. It's a very long story but it's been like hell to not only feel this bad but to have the doctor's office treat you as though you are bothering them when you call them in pain! I have been through enough with them, I haven't even spoken to the doctor himself since he prescribed me the Prednisone, just his secretary who said the note about my condition was still sitting on his desk Friday after I had called them on Monday. I now have a nurse advocate working with me, they help you fight your way through the medical system when you need it, it's a great benefit through where I work. And they are helping me so much. Bottom line is that I'm headed for Boston on this coming Tuesday to see a specialist in Crohn's, a harvard med professor who's supposed to be one of the best in this field. I just want to feel better.
I hope you are doing better. Seek out another doctor. I've been through 3 different gastro doctors thus far. Keep me updated on your progress. I go in for another Remicade treatment in 2 weeks.
I got my Got Guts bracelets today.
I'll be wearing one this weekend in Canada, so I'll be easy to find.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
Edit: I hope this isnt to long, or too detailed...I didn't realize it was that big of a post until after. I knew it would be long, but yikes!!
What a thread. This is what I've been looking for, thanks PBM for making the thread, sharing your story and giving me this link. Thank you everyone for sharing your stories, it takes lots of courage to do it. I have a feeling my story may turn to a novel, and I’m sorry if it does. I've never been open about my Crohn's, or anything that goes along with it. Many rough experience with friends, doctors, and medications...everything. Here goes nothing.
I was diagnosed with Crohn's when I was 14. I'm 25 now, so an 11-year war (as I call it) with Crohn's. I don't know how long it was inside me, but I remember having serious issues as far back as age 11 or 12. If only we caught it earlier...(can't dwell on these things). I collapsed in my house one night, crying in pain, my mom forced the issue with my doctors at that point. I was very lucky; I was referred to an incredible GI Specialist at the London Sick Kids hospital. He's still my doctor and he is awesome. I was pumped full of prednisone starting at age 14, the doses ranged from 5mg a day - 60mg a day. I went through all the tests, upper and lower GI work, (yea, the laxative and barium were the worst tasting things on earth. Like a Crohn’s patient needs a laxative?). The doses of prednisone were awful. I suffered massive side effects, including stunted growth. It's destroyed my bones and joints. Prednisone didn't work on me at all. 6 months after diagnosis I had emergency surgery. The surgeon and my specialist found my Crohn’s was far far far worse then originally thought. I lost 1.5 feet of my small intestine, and 2.5 feet of my large during that resection. They weren’t able to remove the entire diseased bowel, it's was to far spread and it was scattered through out my small and large intestine. I was kept on a low dosage of prednisone for a while, and then weaned off. I missed half of grade 9, and barely passed the year. My symptoms started returning within 6 months, but I was in denial and refused to believe/admit it was back. I would blame stupid things for the pain, but wouldn't admit I was sick again. I missed tons of school in grade 10, couldn't participate in gym, which was embarrassing. I love sports, and wanted to be in there. After 2 years of hiding my illness and pain from my friends, my family and my doctor...I couldn't take the pain anymore and I fessed up. I was immediately put back on prednisone at 50mg a day, and immurane. They tried treating my arthritis with Vioxx and Celebrex, but my stomach couldn't take those meds. I just got really sick. I was given Codeine and Demerol for my pain. I had a scope done after that, and the results were very bad. The scarring had covered almost my entire large intestine at that point. They hoped it wasn’t to late for the prednisone and immurane to help. Immurane took about 5 months before I noticed a difference, but even then it was small. I had lost a lot of weight through out all of this; it was constantly fluxuating as well. Prednisone made me gain a lot of weight, but not fat. I became very 'puffy' which earned me the clever nickname in school of Marshmallow. Up until this point in the war, I had kept an extremely positive attitude. I adjusted diet, I listened to all the doctors said...had all the hope and faith in the world. I started doing church activities more often, joined the choir...even though I cannot sign at all After I came clean and admitted I was sick again, depression started in because reality was sinking in. I was at church one day, we were praying and I felt really woozy. Next thing I know I'm laying on a bench with a really sore face. I had just blacked out and dropped. My white blood cell counts were extremely low, and I was showing little response to my medications. My pain was so intense, and almost constant. I'd really be hurting every time I went to the washroom, I passed out more times then I can count sitting on the toilet, from pain, dehydration (possibly blood loss / white blood cell issues as well). After trying various meds that I don't recall the names of, with 0 success, my doctor scheduled me for another colonoscopy to see the extent of the Crohn’s. Again, my doctor was surprised to see it was far far worse then he originally thought. My large bowel was totally covered in scar tissue, and the outer walls were barely holding up. The passage in the bowel was very tiny at this point...he had trouble maneuvering the camera it was so bad. Needless to say, when I came out of it and woke up, I wasn’t allowed to leave the hospital. I was immediately admitted to the London hospital. They told me I would need surgery very quick, and I would most likely need an illiostomy...but they needed to see how much and how bad my bowels were. I was hooked up to a central IV, from my elbow to my heart (or my neck, I don’t remember) and another one in my arm. I was fed through a tube for 2 weeks, and given a whopping 300mg of prednisone a day, to try and bring the inflammation down a bit so they could operate. I was on a steady dose of Demerol every 3 hours for pain. I stayed for 2 weeks before I had my 2nd operation. I had a full colonectomy, and a small portion of my small intestine removed. I was given an illiostomy at the age of 18. After the surgery, my Specialist and the surgeon told me, my guts were very bad. It was even worse then the scope showed. The outer walls were scarred...every layer of my large bowel was basically dead. They informed me, had I not had that operation, I would have died in 2 years. The disease would have eaten me from the inside out. It was very close to spreading to other major organs. I tried to brush it all off like it was nothing at all, but depression grabbed me very tight within 6 months. I was in a very dark place for a long long time. Thinking thoughts people shouldn't think. I thought about death, and bringing it on myself. I resented everything in life, my friends and family. I wanted nothing to do with anything. I felt like I lost everything. Anti-depressants didn’t help much, and I took myself off them. I hated them. Eventually though, I was off my meds and my physical health was improving. My mental state continued to get worse for about 4 years.
Wow...this is the longest post I've ever written on any message board. Take a breather!! If you're still with me, thanks for listening, its like 10 years of stuff coming out. My fingers don’t type as fast as my brain is churning right now
About 6 months before my 2nd operation, I met a particular lady whom I am quite in love with. She saved my life. Even though I was going into this operation, she knew all that would come out of it. She stuck by me, through everything. The depression, mood swings, sickness, puking, pooping, operations and most of all, my ostomy. She's still with me today, and some of you got a chance to meet her at the pre-show party in Kitchener. Amazing woman!! In 2001, 3 years after my illiostomy surgery, my girlfriend got pregnant. It didn’t help my depression to be honest, all I could focus on where negative things in life. At that point, all my hope, all my faith, all my will was gone. (Still, she was beside me!) After our son was born, I forced myself to live my life...and it's been no turning back. I'm off all my medications related to my gut. I take amitryptalyn (sp?) for muscle / bone / joint pain and migraines, (side effects of prednisone, and Crohn’s doing it's thing elsewhere). I've been in remission now for about 7 years. I battle with an occasional bout of pain/cramps, and sometimes I get a bowel obstruction from some food I probably shouldn't have eaten. When I get these bouts, sometimes the pain is awful. When those times come, I'll confess, I smoke marijuana. I swear it's like a switch, it just shuts off the pain and I can be normal again...I wish I knew about it during my sickest times...I only started a few years ago. I asked my doctor about it, he knows it helps his patients. He doesn't prescribe it for use, but he wont condone you, or tell you to stop doing it, since he understands (the best a doctor can). With all the nausea and vomiting, loss of appetite he knows it works better, faster and more effectively then popping a painkiller. It's hard enough to eat food, let alone swallow pills that mess up your guts. I'm healthier now then I have been in over 10 years. I play with my son like a normal man. I have energy, hope and faith again. I hope to help others who suffer too, I'm starting to volunteer for CCFC work, and hope to become more involved in my local chapter.
That is my novel...I know I left out hundreds of details, but I am at work I have to do some! If anyone wants to chat, or needs an understanding shoulder...send me a PM or an email crohnolio@hotmail.com I see there's lots of shoulders and ears on this thread, it WILL help to utilize them
I can't believe I forgot to mention this...but my most recent visit to my GI Specialist gave me some really good news. My doctor thinks I'm able to be reconnected. I've been in remission long enough, and he think's I'd have a chance to be alright. As much as I'd like to get rid of it...I'm just to scared of a relapse. I'll have it done eventually, but not yet. Elective stomach surgery rules compared to emergency stomach surgery
Thank you for being so honest and straightforward. That's what this thread is all about.
I've gone through so many of the same things that you've gone through. I've been super skinning...then I've been really puffy because of the prednisone.
It's a hard road, but we are getting the message out there.
Thank you for you help, your friendship and your courage.
Sincerely,
Brent
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
I go in for my third round of Remicade tomorrow. I'll report back tomorrow afternoon.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
CCFA just opened a support group in my area!! Rock on!! My wife and I will prolly attend them. Support is great. Really all I need is my wife. She has been with me through the last 7 years of this disease. I've been sick for 15½ years. She is a very strong and caring person and I don't know what I would do without her. Sometimes I am sad because I am affraid to leave the house and I know she wants to go out and do things. She always says that it doesn't bother her, but it still makes me sad to be the reason she is couped up indoors sometimes. Anyway, everyone stay strong and fight the Crohns!!!
CCFA just opened a support group in my area!! Rock on!! My wife and I will prolly attend them. Support is great. Really all I need is my wife. She has been with me through the last 7 years of this disease. I've been sick for 15½ years. She is a very strong and caring person and I don't know what I would do without her. Sometimes I am sad because I am affraid to leave the house and I know she wants to go out and do things. She always says that it doesn't bother her, but it still makes me sad to be the reason she is couped up indoors sometimes. Anyway, everyone stay strong and fight the Crohns!!!
Rob,
Thanks for sharing. I wish the CCFA would get a support group in my area.
PissBottleWoman is just like your wife. She puts my health in front of hers all the time.
If I feel sick or have to go to the bathroom a lot, she is always ready to go home.
Please keep us updated on your progress.
I had my third Remicade treatment on Monday. I'm kinda sick, so I can't tell if it's working just yet.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
Thanks for sharing. I wish the CCFA would get a support group in my area.
PissBottleWoman is just like your wife. She puts my health in front of hers all the time.
If I feel sick or have to go to the bathroom a lot, she is always ready to go home.
Please keep us updated on your progress.
I had my third Remicade treatment on Monday. I'm kinda sick, so I can't tell if it's working just yet.
PBM
I've been on remicade since '02. At first it helped me tremendously. Then after a year and a half of being on remicade I started to get sick again. Long story short they adjusted the med and now it keeps me from getting worse, but doesn't neccessarily make me better. It just keeps me stable. i hope you have better luck with it.
On another note, I have a wedding to go to in Oct near Philly. i am in the wedding and it is in the middle of a state park. I am nervous, but what doesn't kill you makes you stronger. I like to say fuck the world and do what I want to do. i am no slave to this disease. take care
Edit: I hope this isnt to long, or too detailed...I didn't realize it was that big of a post until after. I knew it would be long, but yikes!!
What a thread. This is what I've been looking for, thanks PBM for making the thread, sharing your story and giving me this link. Thank you everyone for sharing your stories, it takes lots of courage to do it. I have a feeling my story may turn to a novel, and I’m sorry if it does. I've never been open about my Crohn's, or anything that goes along with it. Many rough experience with friends, doctors, and medications...everything. Here goes nothing.
I was diagnosed with Crohn's when I was 14. I'm 25 now, so an 11-year war (as I call it) with Crohn's. I don't know how long it was inside me, but I remember having serious issues as far back as age 11 or 12. If only we caught it earlier...(can't dwell on these things). I collapsed in my house one night, crying in pain, my mom forced the issue with my doctors at that point. I was very lucky; I was referred to an incredible GI Specialist at the London Sick Kids hospital. He's still my doctor and he is awesome. I was pumped full of prednisone starting at age 14, the doses ranged from 5mg a day - 60mg a day. I went through all the tests, upper and lower GI work, (yea, the laxative and barium were the worst tasting things on earth. Like a Crohn’s patient needs a laxative?). The doses of prednisone were awful. I suffered massive side effects, including stunted growth. It's destroyed my bones and joints. Prednisone didn't work on me at all. 6 months after diagnosis I had emergency surgery. The surgeon and my specialist found my Crohn’s was far far far worse then originally thought. I lost 1.5 feet of my small intestine, and 2.5 feet of my large during that resection. They weren’t able to remove the entire diseased bowel, it's was to far spread and it was scattered through out my small and large intestine. I was kept on a low dosage of prednisone for a while, and then weaned off. I missed half of grade 9, and barely passed the year. My symptoms started returning within 6 months, but I was in denial and refused to believe/admit it was back. I would blame stupid things for the pain, but wouldn't admit I was sick again. I missed tons of school in grade 10, couldn't participate in gym, which was embarrassing. I love sports, and wanted to be in there. After 2 years of hiding my illness and pain from my friends, my family and my doctor...I couldn't take the pain anymore and I fessed up. I was immediately put back on prednisone at 50mg a day, and immurane. They tried treating my arthritis with Vioxx and Celebrex, but my stomach couldn't take those meds. I just got really sick. I was given Codeine and Demerol for my pain. I had a scope done after that, and the results were very bad. The scarring had covered almost my entire large intestine at that point. They hoped it wasn’t to late for the prednisone and immurane to help. Immurane took about 5 months before I noticed a difference, but even then it was small. I had lost a lot of weight through out all of this; it was constantly fluxuating as well. Prednisone made me gain a lot of weight, but not fat. I became very 'puffy' which earned me the clever nickname in school of Marshmallow. Up until this point in the war, I had kept an extremely positive attitude. I adjusted diet, I listened to all the doctors said...had all the hope and faith in the world. I started doing church activities more often, joined the choir...even though I cannot sign at all After I came clean and admitted I was sick again, depression started in because reality was sinking in. I was at church one day, we were praying and I felt really woozy. Next thing I know I'm laying on a bench with a really sore face. I had just blacked out and dropped. My white blood cell counts were extremely low, and I was showing little response to my medications. My pain was so intense, and almost constant. I'd really be hurting every time I went to the washroom, I passed out more times then I can count sitting on the toilet, from pain, dehydration (possibly blood loss / white blood cell issues as well). After trying various meds that I don't recall the names of, with 0 success, my doctor scheduled me for another colonoscopy to see the extent of the Crohn’s. Again, my doctor was surprised to see it was far far worse then he originally thought. My large bowel was totally covered in scar tissue, and the outer walls were barely holding up. The passage in the bowel was very tiny at this point...he had trouble maneuvering the camera it was so bad. Needless to say, when I came out of it and woke up, I wasn’t allowed to leave the hospital. I was immediately admitted to the London hospital. They told me I would need surgery very quick, and I would most likely need an illiostomy...but they needed to see how much and how bad my bowels were. I was hooked up to a central IV, from my elbow to my heart (or my neck, I don’t remember) and another one in my arm. I was fed through a tube for 2 weeks, and given a whopping 300mg of prednisone a day, to try and bring the inflammation down a bit so they could operate. I was on a steady dose of Demerol every 3 hours for pain. I stayed for 2 weeks before I had my 2nd operation. I had a full colonectomy, and a small portion of my small intestine removed. I was given an illiostomy at the age of 18. After the surgery, my Specialist and the surgeon told me, my guts were very bad. It was even worse then the scope showed. The outer walls were scarred...every layer of my large bowel was basically dead. They informed me, had I not had that operation, I would have died in 2 years. The disease would have eaten me from the inside out. It was very close to spreading to other major organs. I tried to brush it all off like it was nothing at all, but depression grabbed me very tight within 6 months. I was in a very dark place for a long long time. Thinking thoughts people shouldn't think. I thought about death, and bringing it on myself. I resented everything in life, my friends and family. I wanted nothing to do with anything. I felt like I lost everything. Anti-depressants didn’t help much, and I took myself off them. I hated them. Eventually though, I was off my meds and my physical health was improving. My mental state continued to get worse for about 4 years.
Wow...this is the longest post I've ever written on any message board. Take a breather!! If you're still with me, thanks for listening, its like 10 years of stuff coming out. My fingers don’t type as fast as my brain is churning right now
About 6 months before my 2nd operation, I met a particular lady whom I am quite in love with. She saved my life. Even though I was going into this operation, she knew all that would come out of it. She stuck by me, through everything. The depression, mood swings, sickness, puking, pooping, operations and most of all, my ostomy. She's still with me today, and some of you got a chance to meet her at the pre-show party in Kitchener. Amazing woman!! In 2001, 3 years after my illiostomy surgery, my girlfriend got pregnant. It didn’t help my depression to be honest, all I could focus on where negative things in life. At that point, all my hope, all my faith, all my will was gone. (Still, she was beside me!) After our son was born, I forced myself to live my life...and it's been no turning back. I'm off all my medications related to my gut. I take amitryptalyn (sp?) for muscle / bone / joint pain and migraines, (side effects of prednisone, and Crohn’s doing it's thing elsewhere). I've been in remission now for about 7 years. I battle with an occasional bout of pain/cramps, and sometimes I get a bowel obstruction from some food I probably shouldn't have eaten. When I get these bouts, sometimes the pain is awful. When those times come, I'll confess, I smoke marijuana. I swear it's like a switch, it just shuts off the pain and I can be normal again...I wish I knew about it during my sickest times...I only started a few years ago. I asked my doctor about it, he knows it helps his patients. He doesn't prescribe it for use, but he wont condone you, or tell you to stop doing it, since he understands (the best a doctor can). With all the nausea and vomiting, loss of appetite he knows it works better, faster and more effectively then popping a painkiller. It's hard enough to eat food, let alone swallow pills that mess up your guts. I'm healthier now then I have been in over 10 years. I play with my son like a normal man. I have energy, hope and faith again. I hope to help others who suffer too, I'm starting to volunteer for CCFC work, and hope to become more involved in my local chapter.
That is my novel...I know I left out hundreds of details, but I am at work I have to do some! If anyone wants to chat, or needs an understanding shoulder...send me a PM or an email crohnolio@hotmail.com I see there's lots of shoulders and ears on this thread, it WILL help to utilize them
I can't believe I forgot to mention this...but my most recent visit to my GI Specialist gave me some really good news. My doctor thinks I'm able to be reconnected. I've been in remission long enough, and he think's I'd have a chance to be alright. As much as I'd like to get rid of it...I'm just to scared of a relapse. I'll have it done eventually, but not yet. Elective stomach surgery rules compared to emergency stomach surgery
Ryan
a.k.a Krohn
This was a really long post...sorry.
Wow. You have been through alot. I'm glad things are going so much better for you. I have had Crohns for as far back as I can remember. I wasn't diagnosed until my senior year of high school. I have had alot of similar experiences with prednisone, etc. I have 3 year old twin girls and what seems weird to me is I felt the best I have ever felt in my life when I was pregnant with them. The last trimester was not good, but up til that point, besides being tired (which I am alot anyway) I could eat anything with no side effects. It was the closest I've been to being normal. In April 2004, they removed 3 ft. of small intestine and I still am having problems, but not as bad. I have insurance issues right now that are slowly getting straightened out, but I am only on Colestid right now and it is getting me through. I have a tendancy to get obstructions as well and my doctor told me that is the type of crohns disease I have-I will always have problems with that. It's great you have such a good support system. Mine isn't half bad either. I understand alot of what you've gone through. We can always hope for a cure-that's what I'm holding out for!!!!!
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
Yeah my sister has crohns too and she signed me up years ago. They send you news letters and things of that nature. It is a good organization. I have been sporting my Got Guts bracelet for a few months now. i am to skinny to wear it around my wrist, so I wear it around my ankle. I live in Fl so i always have shorts on. It actually draws more attention this way. "what's that blue thing around your ankle" I tell them crohns and they always ask what crohns is. So I have actually brought awareness to a few people.
Just an update on my diagnosis. I saw my gastroenterologist today and I am suppose to start Remicade on May 12.
Basically with Crohn's, your immune system attacks your body. Remicade suppresses your immune system. So, while I am more prone to infections, hopefully, I will start to feel better.
I know many of you support various CCFA causes because of the outspoken awareness of Mike. Thanks for all your encouraging words and donations.
Hopefully, I will be up to speed this September. While I won't be able to toss back any Canadian beer, I will toast a Mountain Dew (just as bad for me) with you.
Cheers to the fans, the band and Mike.
Sincerely,
PissBottleMan
i'm sorry people but sometimes i think that you can be so bloody boaring ....
just because mike got the sickness that dosn't mean that i need to hear about it .
if mike never had that sickness i'm sure you wouldn't talk about it all on this massegebaord , and i think you know that , it's like AA LOOK HOW COOL I AM I GOT CROHNS LIKE MIKE OWOWOWOW!!!!
i'm sorry people but sometimes i think that you can be so bloody boaring ....
just because mike got the sickness that dosn't mean that i need to hear about it .
if mike never had that sickness i'm sure you wouldn't talk about it all on this massegebaord , and i think you know that , it's like AA LOOK HOW COOL I AM I GOT CROHNS LIKE MIKE OWOWOWOW!!!!
You're exactly right...I would've have talked about it. It's kind of an embarrassing disease to have.
In Kitchener, on our Pre-Show Party Card, I signed, "Mike, thanks for giving me a voice!"
Mike put a face on this disease. Now that the fans know about him and his struggles, hopefully, we can raise more awareness and support.
Knowing that Mike has the disease has really brought a sense of peace to me. I know that I'm not alone in this battle. I know that it can happen to anyone.
I have to follow the example that he has set and continue to raise support and awareness.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
i'm sorry people but sometimes i think that you can be so bloody boaring ....
just because mike got the sickness that dosn't mean that i need to hear about it .
if mike never had that sickness i'm sure you wouldn't talk about it all on this massegebaord , and i think you know that , it's like AA LOOK HOW COOL I AM I GOT CROHNS LIKE MIKE OWOWOWOW!!!!
MUSIC HELP YOU!
PBM, you have to much restraint!! An asshole comes to distrupt your thread, and you can still be nice about it! I must take some lessons from you.
As for Firas. You find this thread boring? You find other people discussing common illness boring? Why the fuck are you reading it then, let alone taking time out of your day to make a post to say you find it boring. Here's a tip, DON'T READ IT! I really hope the mods can remove your verbal pollution from our thread.
I'd love to just blow my top on you, but this thread is far from the right place. I'll save my energy, as anyone who has a clue about what good health actually is, it's to hard to come by.
Please take a few minutes to watch this great interview with Mike. He talks about struggling with the diesase early on, living with Crohn's Disease, the CCFC fundraisers, his medications, etc...
We are not alone in our fight.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
Please take a few minutes to watch this great interview with Mike. He talks about struggling with the diesase early on, living with Crohn's Disease, the CCFC fundraisers, his medications, etc...
We are not alone in our fight.
PBM
Thanks for that video! We know Mike is right...him stepping up and telling the world about it, made it a lot easier for tons of people to talk about it. He goes into a fair amount of detail too. I didn't realize he was still on medications, it's encouraging to see him performing at his level, while being on these shitty meds. Go Mike!
Thanks for the thread and sharing all you info. Don't mind those that think it's boring.
I've got some problems of my own, nothing diagnosed and I really think my issue is related to over-active stomach acid. I need to see my doctor again though. Anyhow, thanks.
I don't usually like to give any advice, however, since we are entering the time of year where all the nasty bugs and viruses seem to attack most of the population i feel I should. I started on a drug recently that is similar to Remicade in the way it suppresses the immune system. It is called Imuran. Right now I am home with pnemonia due to my low immunity. Makes one somewhat discouraged. Back to my advice, take your vitamins, try to stay away from sick people and wash, wash, wash your hands. Good luck my friend.
Just an update on my diagnosis. I saw my gastroenterologist today and I am suppose to start Remicade on May 12.
Basically with Crohn's, your immune system attacks your body. Remicade suppresses your immune system. So, while I am more prone to infections, hopefully, I will start to feel better.
I know many of you support various CCFA causes because of the outspoken awareness of Mike. Thanks for all your encouraging words and donations.
Hopefully, I will be up to speed this September. While I won't be able to toss back any Canadian beer, I will toast a Mountain Dew (just as bad for me) with you.
You're exactly right, if Mike didn't have this disease we wouldn't be talking about it on this message board.
Last week when I saw Mike in Halifax he had lots to say about his disease and also donated most of the front row to kids with this illness which is totally awesome. He visited the local hospital, he talked to them during the concert and those kids Knew they were the luckiest kids in Halifax that night. Last time I checked this same guy was a member of PJ, is this not a PJ message pit??? Man, it takes all kinds!
i'm sorry people but sometimes i think that you can be so bloody boaring ....
just because mike got the sickness that dosn't mean that i need to hear about it .
if mike never had that sickness i'm sure you wouldn't talk about it all on this massegebaord , and i think you know that , it's like AA LOOK HOW COOL I AM I GOT CROHNS LIKE MIKE OWOWOWOW!!!!
I don't usually like to give any advice, however, since we are entering the time of year where all the nasty bugs and viruses seem to attack most of the population i feel I should. I started on a drug recently that is similar to Remicade in the way it suppresses the immune system. It is called Imuran. Right now I am home with pnemonia due to my low immunity. Makes one somewhat discouraged. Back to my advice, take your vitamins, try to stay away from sick people and wash, wash, wash your hands. Good luck my friend.
I'm on Immuran and Remicade. My energy level is usually low, so I have to get a B-12 shot every month.
I'm happy to report that I've stopped drinking soft drinks and started to drink water.
Cincy...it never hurts to get checked by a doctor, especially if you have insurance. I hope you are well.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
Congratulations! Now when are you going vegetarian?
Mandy tried to get me to eat a Soy Hot Dog last night...I just couldn't do it.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
Mandy tried to get me to eat a Soy Hot Dog last night...I just couldn't do it.
PBM
Now, now, now PBM...
My uneducated, totally based on snippets of this and that I have read througout the years opinion,: A vegetarian diet would help with your Crohn's. Meat, cheese, milk (the dense, high protein foods) take a long time to digest. These products can sit in your colon for long period of time (24 hours or longer). This garbage just sitting in your colon must make your colon work harder or at the very least cause it to rebel.
Of course, do as I say not as I do. I know for a fact that there is absolutely no value to processed sugar foods. But can I stop? Noooooo. One of these days though.....
The greatness of a nation and its moral progress can be judged by the way it treats its animals. Ghandi
PBM, great video!! one of my fav songs and I always loved the line "think I'll throw these pills away"
yes I totally want to throw my pills away.
update: I am getting close to my second major surgery. i have a stricture in my rectum that the remicade, nor the gazillion other meds i am on, is alleviating. Doctors say ostomy surgery is the most likely outcome. i am only 29 years old and am scared as hell about this. There is a little hope, a very slim chance that they can just do a bowel resection. problem is the that low down is very difficult to do a resection. docs wouldn't know til they opened me up. currently I am getting several test done so they can get a good look at my intestines around the stricture(one of the test was a barium enema, ouch!) I try to keep my head up but am scared. Only positive about and ostomy surgery, I wouldn't have to worry about restrooms!!!
Comments
I've got my insurance papers that have my treatments as being $ 3200. every infusion. Luckily I work for a healthcare corporation & the hospital I go to covers me 100% after what the insurance pays. I am very thankful to have a good job w/ good health insurance!
I can't imagine not having health insurance.
Wow, you're doing this on your own is brave. I am tired of the meds but I have tried going off of mine with no luck, I got much worse. I just finished my Remicade infusions and they have not helped me. My CT scan came back showing nothing out of the ordinary except some cysts, he was trying to rule out other causes of my ongoing stomach problems. He's baffled that the Remicade didn't help or heal my ulcers. I see the doctor Thursday & I'm afraid he'll send me to Boston, at least that's what he talked about earlier if he could not "figure me out".
And, I think you may have said it in your earlier post, this does take an emotional toll on you. They want to put me on an anti-depressant, but I refuse right now as I tell them to fix me first! I am stubborn too & am so tired of meds. I must admit, I am very, very down. But I think if they start helping my Crohn's, then I'll see how the depression is.
Thanks for the inspirational e-mail.
I am glad you are feeling better & I hope you keep on the up & up.
Can't wait to see the video you have put together!
It's not something I like to openly share, but I went on anti-depressants about 3 years ago. After being diagnosed, I got an abcess, then my colon resecion, and then I lost my job. I was in a bad place for a while. I just didn't have the energy to do anything.
They would put me on steroids, which was great for the short term. However, I would end up gaining 15-20 pounds.
It seems like the Remicade is working. I decided to wean off of the Anti-depressants a couple of weeks ago and I am doing great.
I also get a B-12 shot every month. I think that helps too.
Plus, just having energy to do stuff helps tremendously. I like being busy. I think my depression came on because I didn't have the energy to do the things I wanted to anymore.
Give Remicade time...hopefully it will work out great for you.
PBM
Wishlist Foundation: http://wishlistfoundation.org
Hi there!
It's been a while & I hope you are on the up & up!
The Remicade didn't work w/ me so the doc did end up putting me on Prednisone which went very badly. It's a very long story but it's been like hell to not only feel this bad but to have the doctor's office treat you as though you are bothering them when you call them in pain! I have been through enough with them, I haven't even spoken to the doctor himself since he prescribed me the Prednisone, just his secretary who said the note about my condition was still sitting on his desk Friday after I had called them on Monday. I now have a nurse advocate working with me, they help you fight your way through the medical system when you need it, it's a great benefit through where I work. And they are helping me so much. Bottom line is that I'm headed for Boston on this coming Tuesday to see a specialist in Crohn's, a harvard med professor who's supposed to be one of the best in this field. I just want to feel better.
I hope you are doing better. Seek out another doctor. I've been through 3 different gastro doctors thus far. Keep me updated on your progress. I go in for another Remicade treatment in 2 weeks.
I got my Got Guts bracelets today.
I'll be wearing one this weekend in Canada, so I'll be easy to find.
PBM
Wishlist Foundation: http://wishlistfoundation.org
What a thread. This is what I've been looking for, thanks PBM for making the thread, sharing your story and giving me this link. Thank you everyone for sharing your stories, it takes lots of courage to do it. I have a feeling my story may turn to a novel, and I’m sorry if it does. I've never been open about my Crohn's, or anything that goes along with it. Many rough experience with friends, doctors, and medications...everything. Here goes nothing.
I was diagnosed with Crohn's when I was 14. I'm 25 now, so an 11-year war (as I call it) with Crohn's. I don't know how long it was inside me, but I remember having serious issues as far back as age 11 or 12. If only we caught it earlier...(can't dwell on these things). I collapsed in my house one night, crying in pain, my mom forced the issue with my doctors at that point. I was very lucky; I was referred to an incredible GI Specialist at the London Sick Kids hospital. He's still my doctor and he is awesome. I was pumped full of prednisone starting at age 14, the doses ranged from 5mg a day - 60mg a day. I went through all the tests, upper and lower GI work, (yea, the laxative and barium were the worst tasting things on earth. Like a Crohn’s patient needs a laxative?). The doses of prednisone were awful. I suffered massive side effects, including stunted growth. It's destroyed my bones and joints. Prednisone didn't work on me at all. 6 months after diagnosis I had emergency surgery. The surgeon and my specialist found my Crohn’s was far far far worse then originally thought. I lost 1.5 feet of my small intestine, and 2.5 feet of my large during that resection. They weren’t able to remove the entire diseased bowel, it's was to far spread and it was scattered through out my small and large intestine. I was kept on a low dosage of prednisone for a while, and then weaned off. I missed half of grade 9, and barely passed the year. My symptoms started returning within 6 months, but I was in denial and refused to believe/admit it was back. I would blame stupid things for the pain, but wouldn't admit I was sick again. I missed tons of school in grade 10, couldn't participate in gym, which was embarrassing. I love sports, and wanted to be in there. After 2 years of hiding my illness and pain from my friends, my family and my doctor...I couldn't take the pain anymore and I fessed up. I was immediately put back on prednisone at 50mg a day, and immurane. They tried treating my arthritis with Vioxx and Celebrex, but my stomach couldn't take those meds. I just got really sick. I was given Codeine and Demerol for my pain. I had a scope done after that, and the results were very bad. The scarring had covered almost my entire large intestine at that point. They hoped it wasn’t to late for the prednisone and immurane to help. Immurane took about 5 months before I noticed a difference, but even then it was small. I had lost a lot of weight through out all of this; it was constantly fluxuating as well. Prednisone made me gain a lot of weight, but not fat. I became very 'puffy' which earned me the clever nickname in school of Marshmallow. Up until this point in the war, I had kept an extremely positive attitude. I adjusted diet, I listened to all the doctors said...had all the hope and faith in the world. I started doing church activities more often, joined the choir...even though I cannot sign at all
Wow...this is the longest post I've ever written on any message board. Take a breather!! If you're still with me, thanks for listening, its like 10 years of stuff coming out. My fingers don’t type as fast as my brain is churning right now
About 6 months before my 2nd operation, I met a particular lady whom I am quite in love with. She saved my life. Even though I was going into this operation, she knew all that would come out of it. She stuck by me, through everything. The depression, mood swings, sickness, puking, pooping, operations and most of all, my ostomy. She's still with me today, and some of you got a chance to meet her at the pre-show party in Kitchener. Amazing woman!! In 2001, 3 years after my illiostomy surgery, my girlfriend got pregnant. It didn’t help my depression to be honest, all I could focus on where negative things in life. At that point, all my hope, all my faith, all my will was gone. (Still, she was beside me!) After our son was born, I forced myself to live my life...and it's been no turning back. I'm off all my medications related to my gut. I take amitryptalyn (sp?) for muscle / bone / joint pain and migraines, (side effects of prednisone, and Crohn’s doing it's thing elsewhere). I've been in remission now for about 7 years. I battle with an occasional bout of pain/cramps, and sometimes I get a bowel obstruction from some food I probably shouldn't have eaten. When I get these bouts, sometimes the pain is awful. When those times come, I'll confess, I smoke marijuana. I swear it's like a switch, it just shuts off the pain and I can be normal again...I wish I knew about it during my sickest times...I only started a few years ago. I asked my doctor about it, he knows it helps his patients. He doesn't prescribe it for use, but he wont condone you, or tell you to stop doing it, since he understands (the best a doctor can). With all the nausea and vomiting, loss of appetite he knows it works better, faster and more effectively then popping a painkiller. It's hard enough to eat food, let alone swallow pills that mess up your guts. I'm healthier now then I have been in over 10 years. I play with my son like a normal man. I have energy, hope and faith again. I hope to help others who suffer too, I'm starting to volunteer for CCFC work, and hope to become more involved in my local chapter.
That is my novel...I know I left out hundreds of details, but I am at work
I can't believe I forgot to mention this...but my most recent visit to my GI Specialist gave me some really good news. My doctor thinks I'm able to be reconnected. I've been in remission long enough, and he think's I'd have a chance to be alright. As much as I'd like to get rid of it...I'm just to scared of a relapse. I'll have it done eventually, but not yet. Elective stomach surgery rules compared to emergency stomach surgery
Ryan
a.k.a Krohn
This was a really long post...sorry.
www.ccfc.ca
www.ccfa.org
Thank you for being so honest and straightforward. That's what this thread is all about.
I've gone through so many of the same things that you've gone through. I've been super skinning...then I've been really puffy because of the prednisone.
It's a hard road, but we are getting the message out there.
Thank you for you help, your friendship and your courage.
Sincerely,
Brent
Wishlist Foundation: http://wishlistfoundation.org
PBM
Wishlist Foundation: http://wishlistfoundation.org
Rob
ccfa.org
http://organicconsumers.com/
Rob,
Thanks for sharing. I wish the CCFA would get a support group in my area.
PissBottleWoman is just like your wife. She puts my health in front of hers all the time.
If I feel sick or have to go to the bathroom a lot, she is always ready to go home.
Please keep us updated on your progress.
I had my third Remicade treatment on Monday. I'm kinda sick, so I can't tell if it's working just yet.
PBM
Wishlist Foundation: http://wishlistfoundation.org
On another note, I have a wedding to go to in Oct near Philly. i am in the wedding and it is in the middle of a state park. I am nervous, but what doesn't kill you makes you stronger. I like to say fuck the world and do what I want to do. i am no slave to this disease. take care
ccfa.org
http://organicconsumers.com/
Wow. You have been through alot. I'm glad things are going so much better for you. I have had Crohns for as far back as I can remember. I wasn't diagnosed until my senior year of high school. I have had alot of similar experiences with prednisone, etc. I have 3 year old twin girls and what seems weird to me is I felt the best I have ever felt in my life when I was pregnant with them. The last trimester was not good, but up til that point, besides being tired (which I am alot anyway) I could eat anything with no side effects. It was the closest I've been to being normal. In April 2004, they removed 3 ft. of small intestine and I still am having problems, but not as bad. I have insurance issues right now that are slowly getting straightened out, but I am only on Colestid right now and it is getting me through. I have a tendancy to get obstructions as well and my doctor told me that is the type of crohns disease I have-I will always have problems with that. It's great you have such a good support system. Mine isn't half bad either. I understand alot of what you've gone through. We can always hope for a cure-that's what I'm holding out for!!!!!
-Joan
If you have Crohn's, it something you might want to consider.
You can get more information at http://www.ccfa.org
PBM
Wishlist Foundation: http://wishlistfoundation.org
Yeah my sister has crohns too and she signed me up years ago. They send you news letters and things of that nature. It is a good organization. I have been sporting my Got Guts bracelet for a few months now. i am to skinny to wear it around my wrist, so I wear it around my ankle. I live in Fl so i always have shorts on. It actually draws more attention this way. "what's that blue thing around your ankle" I tell them crohns and they always ask what crohns is. So I have actually brought awareness to a few people.
ccfa.org
http://organicconsumers.com/
i'm sorry people but sometimes i think that you can be so bloody boaring ....
just because mike got the sickness that dosn't mean that i need to hear about it .
if mike never had that sickness i'm sure you wouldn't talk about it all on this massegebaord , and i think you know that , it's like AA LOOK HOW COOL I AM I GOT CROHNS LIKE MIKE OWOWOWOW!!!!
MUSIC HELP YOU!
we love you.
You're exactly right...I would've have talked about it. It's kind of an embarrassing disease to have.
In Kitchener, on our Pre-Show Party Card, I signed, "Mike, thanks for giving me a voice!"
Mike put a face on this disease. Now that the fans know about him and his struggles, hopefully, we can raise more awareness and support.
Knowing that Mike has the disease has really brought a sense of peace to me. I know that I'm not alone in this battle. I know that it can happen to anyone.
I have to follow the example that he has set and continue to raise support and awareness.
PBM
Wishlist Foundation: http://wishlistfoundation.org
PBM, you have to much restraint!! An asshole comes to distrupt your thread, and you can still be nice about it! I must take some lessons from you.
As for Firas. You find this thread boring? You find other people discussing common illness boring? Why the fuck are you reading it then, let alone taking time out of your day to make a post to say you find it boring. Here's a tip, DON'T READ IT! I really hope the mods can remove your verbal pollution from our thread.
I'd love to just blow my top on you, but this thread is far from the right place. I'll save my energy, as anyone who has a clue about what good health actually is, it's to hard to come by.
www.ccfc.ca
www.ccfa.org
Please take a few minutes to watch this great interview with Mike. He talks about struggling with the diesase early on, living with Crohn's Disease, the CCFC fundraisers, his medications, etc...
We are not alone in our fight.
PBM
Wishlist Foundation: http://wishlistfoundation.org
Thanks for that video! We know Mike is right...him stepping up and telling the world about it, made it a lot easier for tons of people to talk about it. He goes into a fair amount of detail too. I didn't realize he was still on medications, it's encouraging to see him performing at his level, while being on these shitty meds. Go Mike!
Krohn
www.ccfc.ca
www.ccfa.org
Thanks for the thread and sharing all you info. Don't mind those that think it's boring.
I've got some problems of my own, nothing diagnosed and I really think my issue is related to over-active stomach acid. I need to see my doctor again though. Anyhow, thanks.
Last week when I saw Mike in Halifax he had lots to say about his disease and also donated most of the front row to kids with this illness which is totally awesome. He visited the local hospital, he talked to them during the concert and those kids Knew they were the luckiest kids in Halifax that night. Last time I checked this same guy was a member of PJ, is this not a PJ message pit??? Man, it takes all kinds!
I'm on Immuran and Remicade. My energy level is usually low, so I have to get a B-12 shot every month.
I'm happy to report that I've stopped drinking soft drinks and started to drink water.
Cincy...it never hurts to get checked by a doctor, especially if you have insurance. I hope you are well.
PBM
Wishlist Foundation: http://wishlistfoundation.org
http://video.google.com/videosearch?q=Crohn%27s+Disease&page=1&lv=1
PBM
Wishlist Foundation: http://wishlistfoundation.org
Congratulations! Now when are you going vegetarian?
Mandy tried to get me to eat a Soy Hot Dog last night...I just couldn't do it.
PBM
Wishlist Foundation: http://wishlistfoundation.org
Now, now, now PBM...
My uneducated, totally based on snippets of this and that I have read througout the years opinion,: A vegetarian diet would help with your Crohn's. Meat, cheese, milk (the dense, high protein foods) take a long time to digest. These products can sit in your colon for long period of time (24 hours or longer). This garbage just sitting in your colon must make your colon work harder or at the very least cause it to rebel.
Of course, do as I say not as I do. I know for a fact that there is absolutely no value to processed sugar foods. But can I stop? Noooooo. One of these days though.....
yes I totally want to throw my pills away.
update: I am getting close to my second major surgery. i have a stricture in my rectum that the remicade, nor the gazillion other meds i am on, is alleviating. Doctors say ostomy surgery is the most likely outcome. i am only 29 years old and am scared as hell about this. There is a little hope, a very slim chance that they can just do a bowel resection. problem is the that low down is very difficult to do a resection. docs wouldn't know til they opened me up. currently I am getting several test done so they can get a good look at my intestines around the stricture(one of the test was a barium enema, ouch!) I try to keep my head up but am scared. Only positive about and ostomy surgery, I wouldn't have to worry about restrooms!!!
ccfa.org
http://organicconsumers.com/