-What is the test or x-ray that most often diagnonses IBD/S, and the same question for Chrohn's?
-Has the medical community made a link between dysmenorrhea and Crohn's/IBS/IBD, and if so, where can I find info?
Thanks
Hey Yellowstripes,
I have Crohn's myself, but I imagine the tests used to diagnose are the same for IBS and IBD. I was diagnosed 12 years ago, and I think the first test I got was a basic xray of my stomach area. From there it went to an upper GI barium. Then the it started getting bad with the Lower GI Barium. Blood tests, stool samples all along the way. From my experience, it's also the same string of tests they use to determine how bad it is. Colonoscopy was used to see how bad I was when Lower GI didnt tell us much. Thankfully my doc knocks me out real good before those lower tests Valium and Demerol !
I'll see if i can find anything regarding your other question. PBM is a great help with this stuff!
Acidophilus Lactobacilli dietary supplement (Acidophilus is the culture in yogurt). I buy this at Costco pharmacy OTC for $3.85 for a bottle of 100 capsules.
When first taking this supplement, use 2 caps daily.. One in the morning before eating breakfast and one at night, either around dinner time or before bed... whatever is convenient, especially if you take other medications, you can just take the Acidophilus with those. Do this for the first 50 days.. I say this 'cause I buy them in bottles of 100 and this is the easiest way to remember when to change your dosing schedule. After the first 50 days, begin only taking one per day in the morning. This is sufficient for me, but a person with a more advanced disease state may want to continue the 2 per day dosing schedule, or even take greater doses. That would be a personal choice based on response. I would recommend lowering to the one cap each day after the first couple of months just to see if that is enough to maintain control (no need to spend money if you don't have to).
Acidophilus is a probiotic, as opposed to an anti-biotic. Anti-biotics are basically a poison to the bad things in your system to erradicate them (and a poison to you), where probiotics work in a healthful way within your body to improve natural body function to prevent or eliminate disease.
Now read why I mention this...
I would like to make a suggestion about taking an inexpensive supplement called Acidophilus that may help some of you almost completely overcome the syptoms of Crohns, IBS, IBD.. It works for me, I swear! Also, I work with alot of these patients in varying disease states, some with quite stable conditions to others that have had to go as far as one or more bowel resections.. The patients that have tried this supplement have all reported a significant improvement from symptoms, especially the diarrhea and the cramping, and the urgency to void immediately after eating.. In fact, my own schedule is quite normal these days, which is a far cry from the days of old which began at 15 years old for me. This is not something that causes an overnight relief, but there is nothing harmful about it, so to add it to your daily regimen of medications until it can build in your body and become effective should not be an issue for those seeking relief. Please see the beginning of my post on how I take it and try to follow that plan if you wish to give this a shot. FYI, I take nothing else at this time (and have not for almost 2 years) due to the relief I have achieved with Acidophilus. I originally took Acidophilus as an experiment to see if it would lower my slightly high cholesterol and help to stabilize my blood sugar (type II diabetes). While I did not see any significant results from either the cholesterol or glucose management, I noticed that my intestinal health had tremendously improved. I was unsure if this was just a period of so called "remission" or if was in fact a benefit of the acidophilus, I stopped taking it and this was the result.. I continued to be quite stable during the next month or two without the supplement.. Then, the problem began to resurface and continued to worsen. I remained off the supplement for nearly a year. My symtoms were all back in full force with no relief in sight. I began the supplement again, taking them as I had originally, which is described above. The rest is basically history. The problem once again literally went away and after nearly 2 years of being on it again, I have maintained excellent control and stability. I take my Acidophilus without fail each morning.
If anyone decides to give this a shot, please let me know how it went for you. I work in a doctors office and deal with Rx drugs all day. You would not believe the amount of drugs and the cost to the patient to deal with one problem like Crohn's or IBS, let alone when the patient suffers from multiple disease types. I'd be thrilled if even a handful of people could thumb their nose at these huge drug companies and get better, healthier relief from a $3.85 supplement!
Thats a good read Zanne, thanks for sharing that. I'm sure i've read about the probiotic theory in a few articles i've come by, but it's good to hear first hand success.
Acidophilus Lactobacilli dietary supplement (Acidophilus is the culture in yogurt). I buy this at Costco pharmacy OTC for $3.85 for a bottle of 100 capsules.
When first taking this supplement, use 2 caps daily.. One in the morning before eating breakfast and one at night, either around dinner time or before bed... whatever is convenient, especially if you take other medications, you can just take the Acidophilus with those. Do this for the first 50 days.. I say this 'cause I buy them in bottles of 100 and this is the easiest way to remember when to change your dosing schedule. After the first 50 days, begin only taking one per day in the morning. This is sufficient for me, but a person with a more advanced disease state may want to continue the 2 per day dosing schedule, or even take greater doses. That would be a personal choice based on response. I would recommend lowering to the one cap each day after the first couple of months just to see if that is enough to maintain control (no need to spend money if you don't have to).
Acidophilus is a probiotic, as opposed to an anti-biotic. Anti-biotics are basically a poison to the bad things in your system to erradicate them (and a poison to you), where probiotics work in a healthful way within your body to improve natural body function to prevent or eliminate disease.
Now read why I mention this...
I would like to make a suggestion about taking an inexpensive supplement called Acidophilus that may help some of you almost completely overcome the syptoms of Crohns, IBS, IBD.. It works for me, I swear! Also, I work with alot of these patients in varying disease states, some with quite stable conditions to others that have had to go as far as one or more bowel resections.. The patients that have tried this supplement have all reported a significant improvement from symptoms, especially the diarrhea and the cramping, and the urgency to void immediately after eating.. In fact, my own schedule is quite normal these days, which is a far cry from the days of old which began at 15 years old for me. This is not something that causes an overnight relief, but there is nothing harmful about it, so to add it to your daily regimen of medications until it can build in your body and become effective should not be an issue for those seeking relief. Please see the beginning of my post on how I take it and try to follow that plan if you wish to give this a shot. FYI, I take nothing else at this time (and have not for almost 2 years) due to the relief I have achieved with Acidophilus. I originally took Acidophilus as an experiment to see if it would lower my slightly high cholesterol and help to stabilize my blood sugar (type II diabetes). While I did not see any significant results from either the cholesterol or glucose management, I noticed that my intestinal health had tremendously improved. I was unsure if this was just a period of so called "remission" or if was in fact a benefit of the acidophilus, I stopped taking it and this was the result.. I continued to be quite stable during the next month or two without the supplement.. Then, the problem began to resurface and continued to worsen. I remained off the supplement for nearly a year. My symtoms were all back in full force with no relief in sight. I began the supplement again, taking them as I had originally, which is described above. The rest is basically history. The problem once again literally went away and after nearly 2 years of being on it again, I have maintained excellent control and stability. I take my Acidophilus without fail each morning.
If anyone decides to give this a shot, please let me know how it went for you. I work in a doctors office and deal with Rx drugs all day. You would not believe the amount of drugs and the cost to the patient to deal with one problem like Crohn's or IBS, let alone when the patient suffers from multiple disease types. I'd be thrilled if even a handful of people could thumb their nose at these huge drug companies and get better, healthier relief from a $3.85 supplement!
Just realized this thread is a year old tomorrow. My health isn't worse...actually, I have had a lot of energy lately...Remicade must be working.
Hope to see everyone on tour and hope we raise a lot of awareness for the CCFA.
God Bless.
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"
I hope that some of you will add Acidophilus to your daily regimen. I am not suggesting that it replace anything that your doctors have prescribed for you, I am only hoping that you will add it in and see if it helps you. Being that it is so cheap and harmless, I can't see why it's not worth a shot. And no, I don't have stock in Acidophilus cultures lol.
After being stuck on the Dan Ryan Expressway for 45 minutes, we went straight to the United Center to get our tickets.
Long story short...I had to go...bad.
I went inside the UC and the receptionist said I couldn't use the restroom because the public wasn't allowed.
I whipped out my CCFA Card that says: I CAN'T WAIT: Thank you for understanding. The bearer of this card has a medical condition that requires him/her to use the bathroom facilities urgently.
I never thought I would use that card, but I did...and it came in handy.
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"
To all the great people who are hosting the CCFA parties before the shows!!! THANK YOU from ME!!! I am almost without words for the feelings that I have gotten from these parties...You are spreading the word organically. This is a great thing to do. I am so impressed that you have taken the time to do this in an organized and fun way. This is a huge part of my life and I am honored that the parties have taken on a life of their own. PJ FANS ARE MAKING A DIFFERENCE!!!! This is providing comfort and piece of mind to all people that have Crohn's or Colitus whether they know it or not. Thank you again and keep up the GREAT work. All of the notebooks are very special to me. Mike McC.
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"
My sister has Crohns, my dad did too, and I was just wondering if anyone had tried that new Activia yogurt and if it has made any difference? I keep wanting to suggest it to her but I don't see her often.
Mindi
To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
My sister has Crohns, my dad did too, and I was just wondering if anyone had tried that new Activia yogurt and if it has made any difference? I keep wanting to suggest it to her but I don't see her often.
Mindi
Probiotics are always good to take. They have always been in yogurt just now "Mainstream" yogurt companies are jumping on board and advertising for it's benefits. Stoneyfield Farms is a very good organic yogurt she can take. That has a lot of active bacteria in it.
My drinking team has a hockey problem
The ONLY thing better than a glass of beer is tea with Miss McGill
A protuberance of flesh above the waistband of a tight pair of trousers
I've always had digestive problems from my teenage years on, but was usually able to get by without too many problems. Two years ago I was diagnosed with Irritable Bowel Disease... basically an exclusionary diagnosis for which no test were performed. I took it in stride, took my meds, and got along with my life. Problem was, the meds didn't really seem to help.
Last October I was hospitalized for two weeks with serious stomach pains, nausea, and constant vomiting. I couldn't keep anything down, solid or liquid. My doctor did just about every test in the world (x-rays, CAT scans, hydascans, etc) but nothing showed up. She concluded it was all in my head, wrote me a prescription for Paxil, and sent me on my way. I wasn't pleased, never took the Paxil. I eventually started feeling better. About a month ago, it all came back - diarrhea, stomach pain, nausea... I spent another 6 days in the hospital. I was set up with a GI doc when discharged. The GI doc FINALLY suggested I may have Crohn's, because he feels my symptoms sound very similar to the typical. I've been thinking maybe it was Crohn's since my IBD diagnosis... and I only knew what Crohn's was because of the connection with Mike M... so I want to thank everyone for raising awareness for the disease!
So tomorrow I start my prep for a full colonoscopy, and Thursday morning is the when the procedure will happen. I've had a flex sig colonoscopy last time I was in the hospital, but it didn't really show anything and I was in hospital mode anyway so I didn't care what they did to me. Tomorrow will be different. It's going to be ugly (any have experience with Phosphasoda? I'm scared of it...). It will be even worse because I still have every intention of attending the Boston show tomorrow night (if you're in fan club seats and you have a guy who is constantly making you get up so he can run to the bathroom, that's me, and I apologize in advance!). Anyway, I honestly hope they find something with the colonoscopy. I can't keep living like I have, not eating much, having to run to a bathroom when I have to go... I want it all to end. At least if they see the signs of Crohn's, I can be treated and live something resembling a normal life.
Anyway, just wanted to share my story. The timing couldn't be any worse, could it? I tried and tried to get it switched to another day, but nothing else was open for weeks. Thanks for reading...
and I only knew what Crohn's was because of the connection with Mike M... so I want to thank everyone for raising awareness for the disease!
I am so happy that there is more awareness about Crohns.
My sister was rushed to the er on a Friday night when she was 19 (she is 42 now) and they thought first it was appendicitis. Then they kept accussing her of being pregnant and wouldn't listen when she kept telling them there was no way. They had her in tears saying that she was lying, she was pregnant and now the baby would have problems since she had had some xrays.
Anyway they finally made the connection when they contacted my dad's Dr, my dad had crohns too. And my sister had emergency surgery on a friday night to remove a section of her intestines. She seriously almost died, she had a hole in the section they removed and could have gone into septic shock at any minute. If any of you remember the little girl in Poltergeist died of septic shock.
Goood luck with your testing!!
Mindi
To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
Thanks for sharing your story...I'm saddened to hear of all the problems you faced throughout the way...I had similar problems. I just didnt' know what the problem was until I sought out a gastro doctor.
I would advise you to change your appointment. After you drink the Fleet, you will be making several trips to the bathroom...it's not that bad, but it will you will be better served at home.
That's just my suggestion.
Also, you don't have to just drink Fleet anymore...my doctor prescribes pills that do essentially the same thing. Fleet doesn't taste that great, so the pills are a big help.
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"
How are ya? So glad I got to meet you. Thanks for your help with everything.
-peace
All is well...thank you for everything in Chicago...your shirts were a hit! Thanks for the pictures too...the folks that took advantage of that really seemed to like 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"
All is well...thank you for everything in Chicago...your shirts were a hit! Thanks for the pictures too...the folks that took advantage of that really seemed to like it.
PBM
I wish I would have been the one that took the pictures that day instead of just printing them, but it was too hard to run around taking pics when I was trying to transfer the files and do the prints. My son needs a little more experience with my cameras. He had never been allowed to touch them before that day *laugh*
Take a look at MasterModeler's site for some pics I took at Chicago night one and GR. Haven't got my Chicago night 2 pics up yet. http://www.pearljamstories.com/pearljamstories/
Perhaps it's inapropriate to post on this thread. I don't have Crohn's disease.
I just read through a lot your stories, and I thought I'd share mine.
2 years ago I got a Huge promotion. I was sent by my Hotel Company from Toronto to Scottsdale AZ to be a senior Manager (a great position for my age) at a 5 diamond resort with world class golf. I beat out roughly 40 people in my company for this job. A huge dream come true.
My wife's mother has Crohn's disease. During the time we were down there she started to show signs of Alzeihmers as well. It became increasingly difficult for my father in law to care for her. She was not taking her meds, and became increasingly confused.
After some long discussions, we decided to move back. THey couldn't move to AZ with us, due to the change in Health Care from Canada to the US, and their coverage. I had to get transfered back, took a $20,000/year pay cut, and paid $15,000 out of my pocket to move back.
Now my in-laws live with us. I spend a lot of time cleaning up after her and I know (second hand) how nasty this thing is. My heart goes out to you all.
I am also glad to have met some cool people at the CCFA parties in Toronto.
Thanks for sharing your story...I'm saddened to hear of all the problems you faced throughout the way...I had similar problems. I just didnt' know what the problem was until I sought out a gastro doctor.
I would advise you to change your appointment. After you drink the Fleet, you will be making several trips to the bathroom...it's not that bad, but it will you will be better served at home.
That's just my suggestion.
Also, you don't have to just drink Fleet anymore...my doctor prescribes pills that do essentially the same thing. Fleet doesn't taste that great, so the pills are a big help.
PBM
PBM - Thanks for the support. So, I went through with it and went to the show anyway. I work near Providence RI and my wife works in Boston, so I left work around 4... I ended up spending an hour at home unable to leave (for obvious reasons), and eventually forced myself out the door because I refused to miss the show... and ended up right in to rush hour traffic. It took me about 1hr 45min to get to my wifes office... WORST time of my life! I started the second bottle about two songs into PJ's set, but the second time wasn't nearly as bad. It was totally worth the suffering though, 'cause the show was simply amazing!
Anyway, I had my colonoscopy yesterday... weirdest thing ever. I've gone under for a sig flex colonoscopy and endoscopy and they knocked me completely out. This time, I was partially concious for some of the procedure, to the point where I vaguely remember watching the video screen of my colonoscopy... it was surreal.
Anyway, my question is this: The doc took some biopsies and removed a polyp... but didn't come to any conclusions whether or not I have Crohn's. Is this typical? I thought they should be able to see scar tissue or sores or something on my intestinal walls that would immediately tell them if I've got it or not? I wasn't at all with it when the procedure was over, so I have no idea what (if anything) my doctor said to me. How long does it take to get the biopsy results back?
Sorry, I'm full of more questions now than before I went in...
I can only speak on my experience...I went in to my gastro doctor for a follow up after my first colonscopy.
He showed me pictures from the procedure and showed me the ulcers in my colon...it was pretty obvious that something was not right.
If the doctor you have isn't giving you the answers you need...change. It's as simple as that. I have changed gastro doctors over the past 6 years for a variety of reasons. Luckily, I've found one now that is great.
I don't know how you did that prep before a show....you are a better man than I.
Keep us updated....I hope you are well today.
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've been real busy at work since I took the week off for the PJ shows in May, I haven't had any time to post. I wanted to be sure I got this one in though.
My entire life I've had health problems. Since I was a baby until now. All through school I had to use lots of sick days, and was always playing catch up. At work, I've always had an issue with sick days, never having enough for the entire year. Always having to save my vacation time for sick days. My 26th birthday was on Friday. It's post worthy, because I wanted to share this. For the first ever, in my entire life, I've gone 6 months without needing to call in sick. I've never been healthy enough for a 6 month span. I used to be very proud when I could go a full month without needing to call in to work/school. I wanted to share some good news, and the hope that we can be healthy some day. I pray it lasts, and more so, that others get to this point as well. With the work thats being done with these fundraisers, the hope increases each day
Awesome Ryan...it does feel good to have a few sick days in November and December doesn't 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"
Wow - I just spent about an hour and half reading all of these posts. I've always had bowel issues. My mom said when I was a baby she couldn't keep me on formula. When I was in grade school and had an 'accident' my step-father told me it was a 'inherited' problem from my father's side (not sure how he knew that or what exactly he meant). I've always described my situation as being one extreme or the other. I'm never 'regular'! So, when I finally talked to my good for nothing except writing scripts that don't help doctor about it, he chalked it off to either lactose intolerance or IBS, but I never followed through with any kind of treatment. I try to stay away from dairy cause I do know that that's a factor, ice cream kills me :( - and I notice it gets worse around 'that time of the month' also. Anyway, I'm seeing a new Dr. tonight, and one of the things I want to talk to him about is a mammogram (i'm 35 and have a family history of breast cancer) and I'm thinking of talking to him about this other problem.
I hate to take medicine - I can't ever remember to take vitamins and will sometimes wait until my head feels like it's being hit with a hammer before taking tylenol - so, I'm a little scared - esp since I know certain meds have made it worse too. Like, someone posted awhile back about maybe taking xanax to calm down to help the IBS - personally, I have taken xanax and find it makes my stomach ache more after a couple days taking it. Also, when I had surgery a couple months ago and they gave me percocet, I didn't shit for a week! I was so bloated I thought I'd float away like a balloon! And pot - I smoke pretty regularly, but have noticed that a lot of times, right after, I have to go to the bathroom! Oh, and someone else wrote about that herbal stuff, starts with an A - someone told me to take that while I was on antibiotics to prevent yeast infection - but it didn't work. I know I'm all over the map with this post but a lot is running through my head right now. Nervous about my Dr. appt tonight and having to make the necessary changes to stop feeling so badly.
Anyway, just wanted to show some support to the rest of you...good to see so many people supporting each other like this.
No time to be void or save up on life...you've got to spend it all.
The main thing is that if you have bowel issues, talk to your doctor about them.
If he doesn't have the answers, see a specialist...gastroenterologist.
Taking pills can be frustrating, but if you have a sickness, it becomes part of a daily schedule.
I hope you get everything checked out and keep us updated to your status.
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"
So after the colonoscopy I did a small bowel series (x-ray of your abdomen where they make you drink the liquid chalk - i.e. barium). Had my follow up with my GI doc Monday. He doesn't think I have Crohn's. That's good news and bad news. Good because, to be honest, I wouldn't wish Crohn's on my worst enemy. Bad because now my doc has no clue what's really going on with me.
In the end, he put me on Donnatal to deal with my abdominal pain and diarreah. Anyone have any experience with this stuff? So far it has seemed to be helping out, but I've only had it for a day and a half, and my most recent "episode" (i.e. extended hospital stay) had been calming down for nearly 2 weeks prior to starting the meds. The doc isn't sure what's wrong, so he at least wants to start trying to lessen the symptoms. (Side note, I find this odd. When I first saw him, he refused to renew scripts I had for Vicodin and Promethazine, which were given to my by the Hospital docs for my pain and nausea, because he said they just hide the symptoms and are no way to treat whatever is wrong with me. Now, he gives me the donnatal which essentially just hides my symptoms...! Sure, Vicodin is a narcotic, and docs seem hesitant to prescribe it, but it was very good about relieving my pain and keeping me out of the ER - why not prescribe it?)
Anyway, spending a week in Myrtle Beach SC for vacation next week... we'll see what happens while I'm down there. I'm terrified of getting ill while down there and having to go to the ER. My in-laws will be with us on vacation, and the last thing I want to do is have one of my bad days with them there... not because they aren't supportive, but it's just kinda a personal thing I need time to deal with and don't want to ruin other peoples vacation because if it.
Anyone else ever worry their Crohn's/IBD/IBS puts a damper on other peoples good time?
So after the colonoscopy I did a small bowel series (x-ray of your abdomen where they make you drink the liquid chalk - i.e. barium). Had my follow up with my GI doc Monday. He doesn't think I have Crohn's. That's good news and bad news. Good because, to be honest, I wouldn't wish Crohn's on my worst enemy. Bad because now my doc has no clue what's really going on with me.
In the end, he put me on Donnatal to deal with my abdominal pain and diarreah. Anyone have any experience with this stuff? So far it has seemed to be helping out, but I've only had it for a day and a half, and my most recent "episode" (i.e. extended hospital stay) had been calming down for nearly 2 weeks prior to starting the meds. The doc isn't sure what's wrong, so he at least wants to start trying to lessen the symptoms. (Side note, I find this odd. When I first saw him, he refused to renew scripts I had for Vicodin and Promethazine, which were given to my by the Hospital docs for my pain and nausea, because he said they just hide the symptoms and are no way to treat whatever is wrong with me. Now, he gives me the donnatal which essentially just hides my symptoms...! Sure, Vicodin is a narcotic, and docs seem hesitant to prescribe it, but it was very good about relieving my pain and keeping me out of the ER - why not prescribe it?)
Anyway, spending a week in Myrtle Beach SC for vacation next week... we'll see what happens while I'm down there. I'm terrified of getting ill while down there and having to go to the ER. My in-laws will be with us on vacation, and the last thing I want to do is have one of my bad days with them there... not because they aren't supportive, but it's just kinda a personal thing I need time to deal with and don't want to ruin other peoples vacation because if it.
Anyone else ever worry their Crohn's/IBD/IBS puts a damper on other peoples good time?
Hey Lovebuzz,
I have not had any experience with that medication, sorry.
I can share the worry about Crohn's and other people's good time. So many times since I was diagnosed (12 years ago) that trips have been cancelled, plans changed, not-so-understanding people getting upset. All because I was to sick, or was having a really bad day. So many people did not understand the day to day changes with Crohn's. I remember a time my Dad, Brother and Myself went on our once upon a time annual fishing trip. We drove 4 1/2 hours to get to the spot. When we got there, I couldn't get myself out of the car, and we had to turn around and drive home. I felt horrible because I ruined the fishing trip. Lets just say thats the last time I went fishing...that was probably 9 years ago. My family has been very supportive and understanding, so they helped taking the guilt away somewhat. Try and find the triggers and what sets off your symptoms. Learning that goes a long way in helping avoid the attacks. Don't get to worried about the trips, the stress only makes things worse in there!
The last few weeks, I've had the energy of a 6 year old...now I've crashed and burned.
Really tired lately.
I'm not quite sure if the Remicade is helping or not.
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"
Cool little news item about CCFA PSA's featuring Mike.
I thought it was pretty cool that they included a picture from the Edmonton show.
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"
Comments
Hey Yellowstripes,
I have Crohn's myself, but I imagine the tests used to diagnose are the same for IBS and IBD. I was diagnosed 12 years ago, and I think the first test I got was a basic xray of my stomach area. From there it went to an upper GI barium. Then the it started getting bad with the Lower GI Barium. Blood tests, stool samples all along the way. From my experience, it's also the same string of tests they use to determine how bad it is. Colonoscopy was used to see how bad I was when Lower GI didnt tell us much. Thankfully my doc knocks me out real good before those lower tests
I'll see if i can find anything regarding your other question. PBM is a great help with this stuff!
www.ccfc.ca
www.ccfa.org
When first taking this supplement, use 2 caps daily.. One in the morning before eating breakfast and one at night, either around dinner time or before bed... whatever is convenient, especially if you take other medications, you can just take the Acidophilus with those. Do this for the first 50 days.. I say this 'cause I buy them in bottles of 100 and this is the easiest way to remember when to change your dosing schedule. After the first 50 days, begin only taking one per day in the morning. This is sufficient for me, but a person with a more advanced disease state may want to continue the 2 per day dosing schedule, or even take greater doses. That would be a personal choice based on response. I would recommend lowering to the one cap each day after the first couple of months just to see if that is enough to maintain control (no need to spend money if you don't have to).
Acidophilus is a probiotic, as opposed to an anti-biotic. Anti-biotics are basically a poison to the bad things in your system to erradicate them (and a poison to you), where probiotics work in a healthful way within your body to improve natural body function to prevent or eliminate disease.
Now read why I mention this...
I would like to make a suggestion about taking an inexpensive supplement called Acidophilus that may help some of you almost completely overcome the syptoms of Crohns, IBS, IBD.. It works for me, I swear! Also, I work with alot of these patients in varying disease states, some with quite stable conditions to others that have had to go as far as one or more bowel resections.. The patients that have tried this supplement have all reported a significant improvement from symptoms, especially the diarrhea and the cramping, and the urgency to void immediately after eating.. In fact, my own schedule is quite normal these days, which is a far cry from the days of old which began at 15 years old for me. This is not something that causes an overnight relief, but there is nothing harmful about it, so to add it to your daily regimen of medications until it can build in your body and become effective should not be an issue for those seeking relief. Please see the beginning of my post on how I take it and try to follow that plan if you wish to give this a shot. FYI, I take nothing else at this time (and have not for almost 2 years) due to the relief I have achieved with Acidophilus. I originally took Acidophilus as an experiment to see if it would lower my slightly high cholesterol and help to stabilize my blood sugar (type II diabetes). While I did not see any significant results from either the cholesterol or glucose management, I noticed that my intestinal health had tremendously improved. I was unsure if this was just a period of so called "remission" or if was in fact a benefit of the acidophilus, I stopped taking it and this was the result.. I continued to be quite stable during the next month or two without the supplement.. Then, the problem began to resurface and continued to worsen. I remained off the supplement for nearly a year. My symtoms were all back in full force with no relief in sight. I began the supplement again, taking them as I had originally, which is described above. The rest is basically history. The problem once again literally went away and after nearly 2 years of being on it again, I have maintained excellent control and stability. I take my Acidophilus without fail each morning.
If anyone decides to give this a shot, please let me know how it went for you. I work in a doctors office and deal with Rx drugs all day. You would not believe the amount of drugs and the cost to the patient to deal with one problem like Crohn's or IBS, let alone when the patient suffers from multiple disease types. I'd be thrilled if even a handful of people could thumb their nose at these huge drug companies and get better, healthier relief from a $3.85 supplement!
-peace
Krohn
www.ccfc.ca
www.ccfa.org
Hope to see everyone on tour and hope we raise a lot of awareness for the CCFA.
God Bless.
PBM
Wishlist Foundation: http://wishlistfoundation.org
PBM
Wishlist Foundation: http://wishlistfoundation.org
-peace
After being stuck on the Dan Ryan Expressway for 45 minutes, we went straight to the United Center to get our tickets.
Long story short...I had to go...bad.
I went inside the UC and the receptionist said I couldn't use the restroom because the public wasn't allowed.
I whipped out my CCFA Card that says: I CAN'T WAIT: Thank you for understanding. The bearer of this card has a medical condition that requires him/her to use the bathroom facilities urgently.
I never thought I would use that card, but I did...and it came in handy.
PBM
Wishlist Foundation: http://wishlistfoundation.org
http://www.pearljam.com/news/index.php?what=News#122
To all the great people who are hosting the CCFA parties before the shows!!! THANK YOU from ME!!! I am almost without words for the feelings that I have gotten from these parties...You are spreading the word organically. This is a great thing to do. I am so impressed that you have taken the time to do this in an organized and fun way. This is a huge part of my life and I am honored that the parties have taken on a life of their own. PJ FANS ARE MAKING A DIFFERENCE!!!! This is providing comfort and piece of mind to all people that have Crohn's or Colitus whether they know it or not. Thank you again and keep up the GREAT work. All of the notebooks are very special to me. Mike McC.
PBM
Wishlist Foundation: http://wishlistfoundation.org
Mindi
Probiotics are always good to take. They have always been in yogurt just now "Mainstream" yogurt companies are jumping on board and advertising for it's benefits. Stoneyfield Farms is a very good organic yogurt she can take. That has a lot of active bacteria in it.
The ONLY thing better than a glass of beer is tea with Miss McGill
A protuberance of flesh above the waistband of a tight pair of trousers
*in prayers, and hopes that all will be well*
@-)----
I never thought I would use that card, but I did...and it came in handy.
awesome story!!!:D Inspiration for others who have C+C.
((hugs))
Last October I was hospitalized for two weeks with serious stomach pains, nausea, and constant vomiting. I couldn't keep anything down, solid or liquid. My doctor did just about every test in the world (x-rays, CAT scans, hydascans, etc) but nothing showed up. She concluded it was all in my head, wrote me a prescription for Paxil, and sent me on my way. I wasn't pleased, never took the Paxil. I eventually started feeling better. About a month ago, it all came back - diarrhea, stomach pain, nausea... I spent another 6 days in the hospital. I was set up with a GI doc when discharged. The GI doc FINALLY suggested I may have Crohn's, because he feels my symptoms sound very similar to the typical. I've been thinking maybe it was Crohn's since my IBD diagnosis... and I only knew what Crohn's was because of the connection with Mike M... so I want to thank everyone for raising awareness for the disease!
So tomorrow I start my prep for a full colonoscopy, and Thursday morning is the when the procedure will happen. I've had a flex sig colonoscopy last time I was in the hospital, but it didn't really show anything and I was in hospital mode anyway so I didn't care what they did to me. Tomorrow will be different. It's going to be ugly (any have experience with Phosphasoda? I'm scared of it...). It will be even worse because I still have every intention of attending the Boston show tomorrow night (if you're in fan club seats and you have a guy who is constantly making you get up so he can run to the bathroom, that's me, and I apologize in advance!). Anyway, I honestly hope they find something with the colonoscopy. I can't keep living like I have, not eating much, having to run to a bathroom when I have to go... I want it all to end. At least if they see the signs of Crohn's, I can be treated and live something resembling a normal life.
Anyway, just wanted to share my story. The timing couldn't be any worse, could it? I tried and tried to get it switched to another day, but nothing else was open for weeks. Thanks for reading...
My sister was rushed to the er on a Friday night when she was 19 (she is 42 now) and they thought first it was appendicitis. Then they kept accussing her of being pregnant and wouldn't listen when she kept telling them there was no way. They had her in tears saying that she was lying, she was pregnant and now the baby would have problems since she had had some xrays.
Anyway they finally made the connection when they contacted my dad's Dr, my dad had crohns too. And my sister had emergency surgery on a friday night to remove a section of her intestines. She seriously almost died, she had a hole in the section they removed and could have gone into septic shock at any minute. If any of you remember the little girl in Poltergeist died of septic shock.
Goood luck with your testing!!
Mindi
Thanks for sharing your story...I'm saddened to hear of all the problems you faced throughout the way...I had similar problems. I just didnt' know what the problem was until I sought out a gastro doctor.
I would advise you to change your appointment. After you drink the Fleet, you will be making several trips to the bathroom...it's not that bad, but it will you will be better served at home.
That's just my suggestion.
Also, you don't have to just drink Fleet anymore...my doctor prescribes pills that do essentially the same thing. Fleet doesn't taste that great, so the pills are a big help.
PBM
Wishlist Foundation: http://wishlistfoundation.org
How are ya?
-peace
All is well...thank you for everything in Chicago...your shirts were a hit! Thanks for the pictures too...the folks that took advantage of that really seemed to like it.
PBM
Wishlist Foundation: http://wishlistfoundation.org
I wish I would have been the one that took the pictures that day instead of just printing them, but it was too hard to run around taking pics when I was trying to transfer the files and do the prints. My son needs a little more experience with my cameras. He had never been allowed to touch them before that day *laugh*
Take a look at MasterModeler's site for some pics I took at Chicago night one and GR. Haven't got my Chicago night 2 pics up yet. http://www.pearljamstories.com/pearljamstories/
*hugs*
-peace
I just read through a lot your stories, and I thought I'd share mine.
2 years ago I got a Huge promotion. I was sent by my Hotel Company from Toronto to Scottsdale AZ to be a senior Manager (a great position for my age) at a 5 diamond resort with world class golf. I beat out roughly 40 people in my company for this job. A huge dream come true.
My wife's mother has Crohn's disease. During the time we were down there she started to show signs of Alzeihmers as well. It became increasingly difficult for my father in law to care for her. She was not taking her meds, and became increasingly confused.
After some long discussions, we decided to move back. THey couldn't move to AZ with us, due to the change in Health Care from Canada to the US, and their coverage. I had to get transfered back, took a $20,000/year pay cut, and paid $15,000 out of my pocket to move back.
Now my in-laws live with us. I spend a lot of time cleaning up after her and I know (second hand) how nasty this thing is. My heart goes out to you all.
I am also glad to have met some cool people at the CCFA parties in Toronto.
Jon
PBM - Thanks for the support. So, I went through with it and went to the show anyway. I work near Providence RI and my wife works in Boston, so I left work around 4... I ended up spending an hour at home unable to leave (for obvious reasons), and eventually forced myself out the door because I refused to miss the show... and ended up right in to rush hour traffic. It took me about 1hr 45min to get to my wifes office... WORST time of my life! I started the second bottle about two songs into PJ's set, but the second time wasn't nearly as bad. It was totally worth the suffering though, 'cause the show was simply amazing!
Anyway, I had my colonoscopy yesterday... weirdest thing ever. I've gone under for a sig flex colonoscopy and endoscopy and they knocked me completely out. This time, I was partially concious for some of the procedure, to the point where I vaguely remember watching the video screen of my colonoscopy... it was surreal.
Anyway, my question is this: The doc took some biopsies and removed a polyp... but didn't come to any conclusions whether or not I have Crohn's. Is this typical? I thought they should be able to see scar tissue or sores or something on my intestinal walls that would immediately tell them if I've got it or not? I wasn't at all with it when the procedure was over, so I have no idea what (if anything) my doctor said to me. How long does it take to get the biopsy results back?
Sorry, I'm full of more questions now than before I went in...
He showed me pictures from the procedure and showed me the ulcers in my colon...it was pretty obvious that something was not right.
If the doctor you have isn't giving you the answers you need...change. It's as simple as that. I have changed gastro doctors over the past 6 years for a variety of reasons. Luckily, I've found one now that is great.
I don't know how you did that prep before a show....you are a better man than I.
Keep us updated....I hope you are well today.
PBM
Wishlist Foundation: http://wishlistfoundation.org
My entire life I've had health problems. Since I was a baby until now. All through school I had to use lots of sick days, and was always playing catch up. At work, I've always had an issue with sick days, never having enough for the entire year. Always having to save my vacation time for sick days. My 26th birthday was on Friday. It's post worthy, because I wanted to share this. For the first ever, in my entire life, I've gone 6 months without needing to call in sick. I've never been healthy enough for a 6 month span. I used to be very proud when I could go a full month without needing to call in to work/school. I wanted to share some good news, and the hope that we can be healthy some day. I pray it lasts, and more so, that others get to this point as well. With the work thats being done with these fundraisers, the hope increases each day
Krohn
www.ccfc.ca
www.ccfa.org
PBM
Wishlist Foundation: http://wishlistfoundation.org
I hate to take medicine - I can't ever remember to take vitamins and will sometimes wait until my head feels like it's being hit with a hammer before taking tylenol - so, I'm a little scared - esp since I know certain meds have made it worse too. Like, someone posted awhile back about maybe taking xanax to calm down to help the IBS - personally, I have taken xanax and find it makes my stomach ache more after a couple days taking it. Also, when I had surgery a couple months ago and they gave me percocet, I didn't shit for a week! I was so bloated I thought I'd float away like a balloon! And pot - I smoke pretty regularly, but have noticed that a lot of times, right after, I have to go to the bathroom! Oh, and someone else wrote about that herbal stuff, starts with an A - someone told me to take that while I was on antibiotics to prevent yeast infection - but it didn't work. I know I'm all over the map with this post but a lot is running through my head right now. Nervous about my Dr. appt tonight and having to make the necessary changes to stop feeling so badly.
Anyway, just wanted to show some support to the rest of you...good to see so many people supporting each other like this.
The main thing is that if you have bowel issues, talk to your doctor about them.
If he doesn't have the answers, see a specialist...gastroenterologist.
Taking pills can be frustrating, but if you have a sickness, it becomes part of a daily schedule.
I hope you get everything checked out and keep us updated to your status.
PBM
Wishlist Foundation: http://wishlistfoundation.org
In the end, he put me on Donnatal to deal with my abdominal pain and diarreah. Anyone have any experience with this stuff? So far it has seemed to be helping out, but I've only had it for a day and a half, and my most recent "episode" (i.e. extended hospital stay) had been calming down for nearly 2 weeks prior to starting the meds. The doc isn't sure what's wrong, so he at least wants to start trying to lessen the symptoms. (Side note, I find this odd. When I first saw him, he refused to renew scripts I had for Vicodin and Promethazine, which were given to my by the Hospital docs for my pain and nausea, because he said they just hide the symptoms and are no way to treat whatever is wrong with me. Now, he gives me the donnatal which essentially just hides my symptoms...! Sure, Vicodin is a narcotic, and docs seem hesitant to prescribe it, but it was very good about relieving my pain and keeping me out of the ER - why not prescribe it?)
Anyway, spending a week in Myrtle Beach SC for vacation next week... we'll see what happens while I'm down there. I'm terrified of getting ill while down there and having to go to the ER. My in-laws will be with us on vacation, and the last thing I want to do is have one of my bad days with them there... not because they aren't supportive, but it's just kinda a personal thing I need time to deal with and don't want to ruin other peoples vacation because if it.
Anyone else ever worry their Crohn's/IBD/IBS puts a damper on other peoples good time?
Hey Lovebuzz,
I have not had any experience with that medication, sorry.
I can share the worry about Crohn's and other people's good time. So many times since I was diagnosed (12 years ago) that trips have been cancelled, plans changed, not-so-understanding people getting upset. All because I was to sick, or was having a really bad day. So many people did not understand the day to day changes with Crohn's. I remember a time my Dad, Brother and Myself went on our once upon a time annual fishing trip. We drove 4 1/2 hours to get to the spot. When we got there, I couldn't get myself out of the car, and we had to turn around and drive home. I felt horrible because I ruined the fishing trip. Lets just say thats the last time I went fishing...that was probably 9 years ago. My family has been very supportive and understanding, so they helped taking the guilt away somewhat. Try and find the triggers and what sets off your symptoms. Learning that goes a long way in helping avoid the attacks. Don't get to worried about the trips, the stress only makes things worse in there!
Krohn
www.ccfc.ca
www.ccfa.org
Really tired lately.
I'm not quite sure if the Remicade is helping or not.
PBM
Wishlist Foundation: http://wishlistfoundation.org
http://s14.photobucket.com/albums/a301/PissBottleMan/?action=view¤t=Mike.jpg
Cool little news item about CCFA PSA's featuring Mike.
I thought it was pretty cool that they included a picture from the Edmonton show.
PBM
Wishlist Foundation: http://wishlistfoundation.org
*bump*