My first clinical encounter with Crohn's was 50 years ago (I was 20), among other things, since then I've had a perforated bowel and 2 other resections. I'm an old guy now but I refuse to stop fighting - the disease et al.
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It's Been 50 Years and I'm Still Counting
- Thread starter CrohnsLifer
- Start date
- Location
- Surrey,UK
Thanks for posting. We need a few more good news posts on Forums. It gives the rest of us old gits hope.
You're well ahead of me in Crohn's years and one re-section up! I found it difficult to picture how the disease had progressed across the years so drew up these charts. It shows that there have been more good years than bad but the period since 2010 has been a bit frantic
http://www.crohnoid.com/2014/11/charting-crohns.html
You're well ahead of me in Crohn's years and one re-section up! I found it difficult to picture how the disease had progressed across the years so drew up these charts. It shows that there have been more good years than bad but the period since 2010 has been a bit frantic
http://www.crohnoid.com/2014/11/charting-crohns.html
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David
Co-Founder
- Location
- Naples, Florida
Welcome to the community. Fifty years and still fighting, good for you!
What is the longest duration you've been in remission during that time?
All my best to you.
What is the longest duration you've been in remission during that time?
All my best to you.
Hi David
As Susan2 remarked, at 20 I didn't know it was Crohn's, it took another seven years to get a diagnosis. After each resection there was a lull in symptoms but they have always returned, sometimes intense (I lost 100lbs after the perforated bowel) - sometimes less so (slowly I've put it back on). It's like a 20 round boxing matched - no matter what happened in the last round you've got to give it your all in the next.
As Susan2 remarked, at 20 I didn't know it was Crohn's, it took another seven years to get a diagnosis. After each resection there was a lull in symptoms but they have always returned, sometimes intense (I lost 100lbs after the perforated bowel) - sometimes less so (slowly I've put it back on). It's like a 20 round boxing matched - no matter what happened in the last round you've got to give it your all in the next.
Hi Lam123
Such an innocent question, but for many in this group I suspect the answer will not please.
In the past, I've been a patient at the McMaster Clinic and even seen such luminaries as Dr. Jeejeedbhoy but 5 years ago I walked away from my GI guy over drug side effects after he pressured me to take Remicade (or related drug) and haven't seen a GI since. So the short answer to the question is, I don't have one. And don't intend to get one.
Oh I still have many of the symptoms - rapid transit syndrome, ab pain, the big D, frequent bouts of nausea, fever fits, occasional iritis out breaks, rashes and so on but I had all this when I was in treatment and not one GI has been able to rein it in.
I've taken many of the drugs and endured many of the tests listed in this forum at one time or another, and suffered the side effects, some which were worse than the disease.
There you have it I'm flying solo (I still visit my GP regularly but she just renews my Imuran scrip). I use a spreadsheet form to keep a close watch on my symptoms, diet and drugs. My stats tell me I'm doing no worse than I was when I was seeing a GI. But I think I'm better off as a result of shaping my self treatment around a lifestyle focus rather than an ill defined, vague goal of remission.
Sympathetic though many of the GI's may be and that's not inconsequential, I've come to the conclusion that if your looking for a cure or even control, they really have no idea and no solution. How many other diseases do you know (beyond this class of condition) that have so many different remedies for purportedly the same thing? Are there 10's treatments for measles or mumps, none of which work for everyone?
I am not recommending that anyone else follow my example, I am, after all, nearing the end of my road and so may feel comfortable taking risks that others might not.
Whew, long answer to a short question, sorry.
Such an innocent question, but for many in this group I suspect the answer will not please.
In the past, I've been a patient at the McMaster Clinic and even seen such luminaries as Dr. Jeejeedbhoy but 5 years ago I walked away from my GI guy over drug side effects after he pressured me to take Remicade (or related drug) and haven't seen a GI since. So the short answer to the question is, I don't have one. And don't intend to get one.
Oh I still have many of the symptoms - rapid transit syndrome, ab pain, the big D, frequent bouts of nausea, fever fits, occasional iritis out breaks, rashes and so on but I had all this when I was in treatment and not one GI has been able to rein it in.
I've taken many of the drugs and endured many of the tests listed in this forum at one time or another, and suffered the side effects, some which were worse than the disease.
There you have it I'm flying solo (I still visit my GP regularly but she just renews my Imuran scrip). I use a spreadsheet form to keep a close watch on my symptoms, diet and drugs. My stats tell me I'm doing no worse than I was when I was seeing a GI. But I think I'm better off as a result of shaping my self treatment around a lifestyle focus rather than an ill defined, vague goal of remission.
Sympathetic though many of the GI's may be and that's not inconsequential, I've come to the conclusion that if your looking for a cure or even control, they really have no idea and no solution. How many other diseases do you know (beyond this class of condition) that have so many different remedies for purportedly the same thing? Are there 10's treatments for measles or mumps, none of which work for everyone?
I am not recommending that anyone else follow my example, I am, after all, nearing the end of my road and so may feel comfortable taking risks that others might not.
Whew, long answer to a short question, sorry.
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CrohnsLifer - Can you post up an empty version of your spreadsheet? - looks interesting. Also thank you, I'm in my 30s and it's good to hear from those further along in years - gives me hope. Wish you could find a good doc - they seem to be harder and harder to find these days.
gracestrong - I'd be glad to post the spreadsheet if someone could tell me how?
I'm afraid its not terribly sophisticated but to change the monthly date just edit the date cell. The spreadsheet is broken into 3 (same) month categories if you change the day in the upper one the subsequent days change the other 2 months automatically update. I use it for all sorts of record keeping but I'll leave the categories I use for Crohn's tracking intact but you will be able to change them to ones that suit your needs. Print it out each month to keep data, I use the back of the paper to detail circumstance sort of like a Crohn's diary.
Now how do I do it as a zip or Excel file.
I'm afraid its not terribly sophisticated but to change the monthly date just edit the date cell. The spreadsheet is broken into 3 (same) month categories if you change the day in the upper one the subsequent days change the other 2 months automatically update. I use it for all sorts of record keeping but I'll leave the categories I use for Crohn's tracking intact but you will be able to change them to ones that suit your needs. Print it out each month to keep data, I use the back of the paper to detail circumstance sort of like a Crohn's diary.
Now how do I do it as a zip or Excel file.
Where the quick reply button is at the end of discussion threads, click the link that says go advanced.
When it loads up, scroll below the typing area and click on the manage attachments button. This will load up a screen with a choose file button. Click that and navigate to your file's location on your computer and select it to upload, then click the upload button. Upon success, click the close window link if you need to and submit your reply.
You'll need to zip it first.
Thank you!!!
When it loads up, scroll below the typing area and click on the manage attachments button. This will load up a screen with a choose file button. Click that and navigate to your file's location on your computer and select it to upload, then click the upload button. Upon success, click the close window link if you need to and submit your reply.
You'll need to zip it first.
Thank you!!!
I'll give it a try.
Looks good.
Looks good.
Worked perfectly - thank you! 
I hope it helps.
Let me know if you want any details.
Let me know if you want any details.