Please bear with me, this is a lengthy story.
My Crohn's first started in 1966 as a minor sensation, feeling like a tennis ball rotating in my stomach.
This developed into a dread full continuous pain within a few weeks, the pain was ongoing 24/7 night and day, never subsiding, but frequently spiking, I have a very high pain threshold, but within a few months with no relief I became so depressed, I actually prayed to die.
Within about 3 months from a very fit active 32year old weighing 160lbs (11st, 4lbs) starkers!, I looked worse than many Belsen victims, barely making 126lbs (9st) fully dressed in boots and overalls.
My family GP, though very familiar with my normal fit and healthy appearance quite frankly really was a waste of space claimed I had an upset tummy and prescribed aludrox for this, which of course I paid for, he was dismissive when I later told him to forget this , since it did me no more good than drinking plain
tap water.
He was also aware that in addition to the terrible pain and weight loss, I had also completely lost my sense of taste of both food and drink, all of these problems were to continue for a full ten years.
After considerable pressure on my GP, I was finally after some 5 months hospitalised for 3days, observation. The 3 days, on a terminal ward in Grimsby general hospital, became 7 weeks, tubes via my nose/throat into my tummy drawing off large amounts of acid in venderpac beakers, red andwhite blod cells all over the place.
Finally discharged by the surgeon, Mr. Sideekie, who suggested that if the pain became any worse, I would be re-admitted and the ULCER ? I DID NOT HAVE AN ULCER.
Ten years later, having in that time moved home and having been looked after by another local GP, and with no further treatment offered I had continued working with this ongoing pain and other problems as described above, I now developed another severe pain in my lower right abdomen.
My new GP suggested this to be my OLD PROBLEM flaring up again, I told him my Old problem had never gone away, and said I was very well aware that this pain is a very different pain in an entirely different area, and asked if this was perhaps associated with my appendix, this was dismissed out of hand.
His answer was to suggest I had pulled a muscle, to take asprin over the weekend and it would subside.
I continued to work with this additional pain for a further 3 weeks, physically lifting my right leg, by hand into my car in order to drive 15 miles to work and to then drive 250 miles a day in a 40 ton petrol tanker, pulling and tugging 40 feet of 4 inch bore heavy armoured rubber delivery hose both around filling station forecourts, and up and down sea going ships gangways refuelling ocean going shipping.
This pain finally spiked, my temperature soared and I almost past out with this
pain, and seeing the local GP once again I insisted on seeing a surgeon , privately, to obtain a second opinion.
The surgeon, Mr EDDY, in Grimsby, was shocked and concerned at what he described as my very sparse condition, when stripped for examination, at the time I brushed this aside , more concerned with the suggested " pulled muscle" .
Mr EDDY, was furious and stated that I had a "massive abscess on my appendix" and went on that he dare not touch it it could kill me, he added he would leave this three months treating this with anti-biotics and would then remove it and the appendix.
Whilst I began to dress again I heard him question my wife regarding my general health, Marily really laid every thing on the line refereing to the past ten years of pain etc.
I was asked to strip again and now confirm what my wife had told him, following further examination he declared my problem to be Crone's and was furious that the GY, hospital surgeons he claimed had failed ten years earlier whilst under their care had failed to examin the lower bowel.
I was admitted to Gy hospital again the following morning on Mr Eddy's instructions, within two days I had a barium enema, and my taste of food and drink, lost for ten years, returned almost immediately following that.
Another 7 weeks in hospital, 5 of which I believe were spent by nursing staff building up my poor state of health sufficient to undergo the hemi-coleptomy which then followed.
Within 9 weeks of that operation I had put on 49 lbs in weight, I was off work for just over 6 months, and have never had an abdominal pain since that time, that was 1976.
In 1980 I relocated with ESSO (EXON) to Heathrow airport where I remained until taking early retirement in late 1992, for my last eighteen months at Heathrow I had problem with high blood loss when toiletting, following colonoscopy this showed polyps on the bowel being the cause.
I was still awaiting after eighteen months to be admitted to Heatherwood hospital, Ascot, for surgery to remove these but it was continually claimed by Heatherwood, that I was delayed by emergency admissions ?
We returned to Lincolshire in April 1993, and within 8 weeks of joining my local surgery I was admitted to Pilgrim hospital, and the polyps were removed by colonoscopy.
At that time I was also then prescribed 2 times daily azathioprine 50mg tablets, this was the first ever suggestion of any follow up treatment for Crohn's, since my hemi-coleptomy in 1976.
In 1997 seeing my local GP regarding severe pain in the base of both thumbs causing loss of grip also, th GP declared this to be arthritis and prescribed an anti-inflmitory tablet, I don ot think this was diclofenic, but on reading the enclosed leaflet, it clearly stated in block letters, NOT TO BE USED WITH CROHN'S, I therefor returned to the GP advising him, of this warning (in case he had not seen my medical notes) and that I did have Crohn's.
It was suggested the side effects of these tablets would be less of a problem to me that the thumb trouble, 3 months later I was having to toilet 17 to 20 times a day and throughout the night time too.
This despite a high dose of steroids prescribed by the consultant at Pilgrim hospital, which resisted any attempt to gradually be reduced, was to continue at that very high rate of toiletting for 7 years, and in which time I became quite literally, housebound.
Toward the end of that time now 2004, my wife and I needed to travel to Spain,(not on holiday) we dare not take holidays away from home, at this time my visits were down to about 12 visits daily.
My consultant at Pilgrim hospital, finally had increased my azathioprine to what he claimed was the maximum dose, sayin that if this failed to sort ou t this problem he would need to concider removing he remainder of my bowe.
My wife for a long time had been buying lactose free milk to try and help this problem, but was unable to obtain this from the supermarket in Spain on this short visit, and bought unsweetened SOYA instead.
Within two days of using this my bowel movents reduced down to 3 and 4 visits a day, and on returning home after a week and once again resorting back to lactose free milk my visit to the toilet again returned to about 12 visits daily.
More unsweetened Soya was obtained from the Morrison supermarket again after 2 to 3 days my toilet visits again reduced to 3 daily max' generally, I am still using the Soya, I rarely now go more than twice daily, and my motions are usually, firm/ish, and that is to date.
In November 2010, a routine colonoscopy ongoing to check on the Crohn's,
identified what was described as a cystic mass on my right kidney and polyps on my bowel, one of which was a flat polyp and which looked suspicious.
The cystic mass was correctly suspected to be cancer, and the kidney and cancer was removed in April of this year, at Lincoln County, this all went to plan, everything is fine in that respect.
It is now the 29th, November, and later today I have a pre-op assesment for the complete removal of my remaining bowel in order to take away the flat polyp also which a subsequent colonoscopy has also proved to be cancerous, this operation is booked for the 13th December, and it is expected to be a total cure for the cancer.
I feel very lucky for having had that routine colonoscopy, I have not had the slightest indication of any thing being amiss, no pain etc, and I look and feel as fit as a rat catchers dog !.
The reason I pass this later news on to you fellow Crohn sufferers is because I note the slight fear and concern that some of us, quite naturally feel regarding undergoing colonoscopy, particularly for the first time maybe.
I have had so many colonoscopies over the past 46 years, I can assure you I HAVE NEVER FELT ANY PAIN OR DISCOMFORT FROM A COLONOSCOPY, the worst thing about this procedure I can assure you, is the inconvenience of the necessary cleansing procedure the previous day or so before.
I am so squemish that I cannot watch the TV hospital soaps etc which my wife enjoys, I have to look away or walk out of the room when it shows someone undergoing an operation.
And yet I kid you not, I have had three colonoscopies to date this year, and I have been wide awake enough to actually find it most interesting to watch intently, the surgeon's own large computer screen alongside myself, whilst he, the surgeon is actually performing the colonoscopy, including the biopsies on myself, and have been able to discuss with him exactly what is going on.
I can assure you seriously, I have only ever felt the very slightest of internal movements during this procedure, but never, the slightest sign of pain.
It is my hope you managed to stick with this lengthy story, and Ihope my experiences will also re-assure you that colonoscopies are nothing to worry about.
Please insist on GP'S seriously and demand second opinions if necessary, and always insist that polyps are removed if found, that is entirely painless and quickly done
I would seriously recommend that the next purchase you make as a crohn's sufferer is a carton of unsweetened SOYA, AND USE THIS IN ALL YOUR CUPS OF TEA AND ON YOUR BREAKFAST CEREALS IN place of dairy milk, it really has worked a miracle for mefor now 8 years, I hope it does the same for you too.
very best wishes
Peter (jack dusty)
My Crohn's first started in 1966 as a minor sensation, feeling like a tennis ball rotating in my stomach.
This developed into a dread full continuous pain within a few weeks, the pain was ongoing 24/7 night and day, never subsiding, but frequently spiking, I have a very high pain threshold, but within a few months with no relief I became so depressed, I actually prayed to die.
Within about 3 months from a very fit active 32year old weighing 160lbs (11st, 4lbs) starkers!, I looked worse than many Belsen victims, barely making 126lbs (9st) fully dressed in boots and overalls.
My family GP, though very familiar with my normal fit and healthy appearance quite frankly really was a waste of space claimed I had an upset tummy and prescribed aludrox for this, which of course I paid for, he was dismissive when I later told him to forget this , since it did me no more good than drinking plain
tap water.
He was also aware that in addition to the terrible pain and weight loss, I had also completely lost my sense of taste of both food and drink, all of these problems were to continue for a full ten years.
After considerable pressure on my GP, I was finally after some 5 months hospitalised for 3days, observation. The 3 days, on a terminal ward in Grimsby general hospital, became 7 weeks, tubes via my nose/throat into my tummy drawing off large amounts of acid in venderpac beakers, red andwhite blod cells all over the place.
Finally discharged by the surgeon, Mr. Sideekie, who suggested that if the pain became any worse, I would be re-admitted and the ULCER ? I DID NOT HAVE AN ULCER.
Ten years later, having in that time moved home and having been looked after by another local GP, and with no further treatment offered I had continued working with this ongoing pain and other problems as described above, I now developed another severe pain in my lower right abdomen.
My new GP suggested this to be my OLD PROBLEM flaring up again, I told him my Old problem had never gone away, and said I was very well aware that this pain is a very different pain in an entirely different area, and asked if this was perhaps associated with my appendix, this was dismissed out of hand.
His answer was to suggest I had pulled a muscle, to take asprin over the weekend and it would subside.
I continued to work with this additional pain for a further 3 weeks, physically lifting my right leg, by hand into my car in order to drive 15 miles to work and to then drive 250 miles a day in a 40 ton petrol tanker, pulling and tugging 40 feet of 4 inch bore heavy armoured rubber delivery hose both around filling station forecourts, and up and down sea going ships gangways refuelling ocean going shipping.
This pain finally spiked, my temperature soared and I almost past out with this
pain, and seeing the local GP once again I insisted on seeing a surgeon , privately, to obtain a second opinion.
The surgeon, Mr EDDY, in Grimsby, was shocked and concerned at what he described as my very sparse condition, when stripped for examination, at the time I brushed this aside , more concerned with the suggested " pulled muscle" .
Mr EDDY, was furious and stated that I had a "massive abscess on my appendix" and went on that he dare not touch it it could kill me, he added he would leave this three months treating this with anti-biotics and would then remove it and the appendix.
Whilst I began to dress again I heard him question my wife regarding my general health, Marily really laid every thing on the line refereing to the past ten years of pain etc.
I was asked to strip again and now confirm what my wife had told him, following further examination he declared my problem to be Crone's and was furious that the GY, hospital surgeons he claimed had failed ten years earlier whilst under their care had failed to examin the lower bowel.
I was admitted to Gy hospital again the following morning on Mr Eddy's instructions, within two days I had a barium enema, and my taste of food and drink, lost for ten years, returned almost immediately following that.
Another 7 weeks in hospital, 5 of which I believe were spent by nursing staff building up my poor state of health sufficient to undergo the hemi-coleptomy which then followed.
Within 9 weeks of that operation I had put on 49 lbs in weight, I was off work for just over 6 months, and have never had an abdominal pain since that time, that was 1976.
In 1980 I relocated with ESSO (EXON) to Heathrow airport where I remained until taking early retirement in late 1992, for my last eighteen months at Heathrow I had problem with high blood loss when toiletting, following colonoscopy this showed polyps on the bowel being the cause.
I was still awaiting after eighteen months to be admitted to Heatherwood hospital, Ascot, for surgery to remove these but it was continually claimed by Heatherwood, that I was delayed by emergency admissions ?
We returned to Lincolshire in April 1993, and within 8 weeks of joining my local surgery I was admitted to Pilgrim hospital, and the polyps were removed by colonoscopy.
At that time I was also then prescribed 2 times daily azathioprine 50mg tablets, this was the first ever suggestion of any follow up treatment for Crohn's, since my hemi-coleptomy in 1976.
In 1997 seeing my local GP regarding severe pain in the base of both thumbs causing loss of grip also, th GP declared this to be arthritis and prescribed an anti-inflmitory tablet, I don ot think this was diclofenic, but on reading the enclosed leaflet, it clearly stated in block letters, NOT TO BE USED WITH CROHN'S, I therefor returned to the GP advising him, of this warning (in case he had not seen my medical notes) and that I did have Crohn's.
It was suggested the side effects of these tablets would be less of a problem to me that the thumb trouble, 3 months later I was having to toilet 17 to 20 times a day and throughout the night time too.
This despite a high dose of steroids prescribed by the consultant at Pilgrim hospital, which resisted any attempt to gradually be reduced, was to continue at that very high rate of toiletting for 7 years, and in which time I became quite literally, housebound.
Toward the end of that time now 2004, my wife and I needed to travel to Spain,(not on holiday) we dare not take holidays away from home, at this time my visits were down to about 12 visits daily.
My consultant at Pilgrim hospital, finally had increased my azathioprine to what he claimed was the maximum dose, sayin that if this failed to sort ou t this problem he would need to concider removing he remainder of my bowe.
My wife for a long time had been buying lactose free milk to try and help this problem, but was unable to obtain this from the supermarket in Spain on this short visit, and bought unsweetened SOYA instead.
Within two days of using this my bowel movents reduced down to 3 and 4 visits a day, and on returning home after a week and once again resorting back to lactose free milk my visit to the toilet again returned to about 12 visits daily.
More unsweetened Soya was obtained from the Morrison supermarket again after 2 to 3 days my toilet visits again reduced to 3 daily max' generally, I am still using the Soya, I rarely now go more than twice daily, and my motions are usually, firm/ish, and that is to date.
In November 2010, a routine colonoscopy ongoing to check on the Crohn's,
identified what was described as a cystic mass on my right kidney and polyps on my bowel, one of which was a flat polyp and which looked suspicious.
The cystic mass was correctly suspected to be cancer, and the kidney and cancer was removed in April of this year, at Lincoln County, this all went to plan, everything is fine in that respect.
It is now the 29th, November, and later today I have a pre-op assesment for the complete removal of my remaining bowel in order to take away the flat polyp also which a subsequent colonoscopy has also proved to be cancerous, this operation is booked for the 13th December, and it is expected to be a total cure for the cancer.
I feel very lucky for having had that routine colonoscopy, I have not had the slightest indication of any thing being amiss, no pain etc, and I look and feel as fit as a rat catchers dog !.
The reason I pass this later news on to you fellow Crohn sufferers is because I note the slight fear and concern that some of us, quite naturally feel regarding undergoing colonoscopy, particularly for the first time maybe.
I have had so many colonoscopies over the past 46 years, I can assure you I HAVE NEVER FELT ANY PAIN OR DISCOMFORT FROM A COLONOSCOPY, the worst thing about this procedure I can assure you, is the inconvenience of the necessary cleansing procedure the previous day or so before.
I am so squemish that I cannot watch the TV hospital soaps etc which my wife enjoys, I have to look away or walk out of the room when it shows someone undergoing an operation.
And yet I kid you not, I have had three colonoscopies to date this year, and I have been wide awake enough to actually find it most interesting to watch intently, the surgeon's own large computer screen alongside myself, whilst he, the surgeon is actually performing the colonoscopy, including the biopsies on myself, and have been able to discuss with him exactly what is going on.
I can assure you seriously, I have only ever felt the very slightest of internal movements during this procedure, but never, the slightest sign of pain.
It is my hope you managed to stick with this lengthy story, and Ihope my experiences will also re-assure you that colonoscopies are nothing to worry about.
Please insist on GP'S seriously and demand second opinions if necessary, and always insist that polyps are removed if found, that is entirely painless and quickly done
I would seriously recommend that the next purchase you make as a crohn's sufferer is a carton of unsweetened SOYA, AND USE THIS IN ALL YOUR CUPS OF TEA AND ON YOUR BREAKFAST CEREALS IN place of dairy milk, it really has worked a miracle for mefor now 8 years, I hope it does the same for you too.
very best wishes
Peter (jack dusty)
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Welcome to the forum! I'm so happy to have someone with this much experience join us. :hug:
