Be warned, this is lengthy, for those in particular recently diagnosed please read it and live in hope.
My problem started in 1966, just a sensation, something which felt to be about the size of a tennis ball seemed to be rotating in my tummy, which over a period of months then became the most unbearable,continual pain, all day and 24/7, I have a very high pain threshold, but this tested me to my absolute limits.
Within a very few months I looked like a Belsen survivor, see the photo's of CYCroh's Guy, in this forum and slim his worst picture down, that was me for a full TEN YEARS, prior to being diagnosed.
From a fit 11stone 4lbs (160 lbs) to barely 9stone (126 lbs) fully dressed in boots and overalls !.
My useless, disinterested local GP, in Grimsby, Linc's UK, after several visits and as my family doctor he was well aware of my normal, healthy appearance, prescribed Aludrox for an upset tummy?, which I had to pay for of course.
Despite a number of visits and after telling him I may just as well drink water for my problem, I finally was put into GY hospital for 3 days observation, I remained there for seven (7) weeks.
Apart from drawning off multiple beakers full of acid via tubes through the nose/throat to abdomen, and advising that my red/white blood cells were all over the place, I was then discharged with the advise that should the pain get any worse I should return and have the ULCER removed, I DID NOT HAVE AN ULCER.
The pain was so intense that my wife had to change the bedding 3 times nightly soaked with pain sweats.
In addition, from the outset and for a further TEN YEARS, I completely lost all sense of taste of both food and drink and was unable mostly to retain anything I did manage to eat.
I continued to work in that conditioin for a further ten years, only once taking a half day off because of this unbearable pain, finally, another pain developed in the lower right abdomen.
By this time, now 1976, we had moved home and I had been reporting to another local GP, and who by this time been made aware of my long standing problem, and the history of it for now some 18 months or so.
So his reaction to my visit regarding this latest, different pain was, " I'm afraid it is your old problem flaring up again", when I insisted that this was a different pain in a different area of my abdomen and that after ten years of the continuous pain, which I still had, did he not think that this may perhaps be my appendix?, he passed this off suggesting I may have pulled a muscle, to go home and take some asprin over the weekend.
I did just that, and worked a further 3 weeks, having to lift my right leg up, by hand, to get into my car to drive 15 miles to work to then drive a 40 ton petrol tanker 250 miles a day and cope with some quite strenuous physical pipe work etc in addition.
Finally the pain spiked, my temperature soared and I almost passed out with the pain, I saw the GP, demanding a second opinion ( my very concerned mother in law had insisted I did this, and bless her, her insisted that she also would pay for this).
The surgeon, Mr. Eddy, I saw in Grimsby was most concerned about my very sparse condition immediately he saw me stripped, I passed off his initial questions reference this, to concentrate on this latest pain.
His reactionto the GP's suggestion that this was a pulled muscle, caused him to swear and curse, saying "you have a massive abscess on your appendix and I dare not touch it it could kill you", he went on to say this was going through a " cooling process", that he would leave this for three months (I believe)treat it with anti-biotics inthe meantime then remove it.
Whilst getting dressed I heard him asking my wife about my general health in view of " Peter's very sparse condition ", my wife really laid it on the line about the above "story", and I was instructed to again strip and following a further examination, he declared that the surgeons who carried out the previous tests and examination in Grimsby hospital, in 1966, had failed to examine the lower bowel, and declared he knew what my problem was and that I may loose a few inches of bowel. He told my wife at that same time that I may well loose the complete bowel.
Mr Eddy had me taken to Grimsby hospital the following morning, under National Health, saying " you are not going to pay for the pain you have endured for the past ten years".
Following a barium enema two days later, my taste for food and drink returned for the first time in ten years, I was kept in hospital for a further 5 weeks whilst the nursing staff brought my drained physical condition to a standard to be able to cope with the operation to my bowel, in total seven weeks in hospital again, and half my bowel removed, hemi-coleptomy.
No problems , just a little sore for a few weeks after the op' and off work 6 months and two weeks, but in the first 9 weeks following the operation I had gained 49 pounds in weight!!.
I have not had the slightest twinge of any pain since that operation, though I did have a major flare up later which caused me to have severe diarrhea 17 to 20 times a day and through the night which continued for 7 more years, despite a high dose of steroids, which took many months to reduce and finally discontinue without causing further flare ups, plus azathioprine (2x50mg) daily, this was again caused by a local GP insisting on me using his prescribed anti-inflmatory medicine (for pains in the base of my thumbs) this DESPITE, the fact that I had pointed out to him that I had Crohn's disease, and thatthe enclosed leaflet with the inflamatory tablets clearly WARNED, in block letters, NOT TO BE USED WITH CROHN's disease
My consultant at Pilgrim hospital, Boston, toward the end of that 7 year flare up ( now 2003 I believe) of diarrhea, eventually increased the azathioprine to his suggested maximum dose, (which continues to date) that is 3x 50mg daily, saying at that time, that if this does not work I think we will need to remove the remainder of your bowel !
By coincidence, at that time we were required to go to Spain for a week, not for pleasure, and in addition to prescribed medications, my wife had insisted for some years that I used a lactose free milk substitute which seemed to help a little, this was not available in the local supermarket close to the hotel we stayed at, and instead Marilyn bought, unsweetened Soya milk substitute, rather than have me go back to dairy milk.
Within two days of using this my bowel movements had suddenly recovered to a maximum of 3 to 4 movements a day, mostly 3 only, and I initially put this down to a change of diet, bottled water etc in Spain.
However a week after returning to UK, bowel movements again returned to 12 plus a day, remembering the Soya, we purchased more of this unsweetened Soya from Morrisons, and within 2 days again my toilet movements dropped and this time to a maximum 0f 2 to 3 per day.
I can confirm that to this day, now 8 years later I remain on the Soya and it is most unusual if I toilet more than twice daily, and not unusually to go once only, and I rarely have diarrhea.
I would seriously highly recommend all Croh's sufferers to at least try unsweetened SOYA, and cut out dairy milk entirely whilst you try this out.
It has most certainly worked for me, 8 years is proof enough for me, and whilst the taste is strange initially, I dislike the taste of milk now when ever I have a cup of tea away from home.
Whilst my crohn's is well under control and has been for the past 8 years, I rarely give it a thought, having said that, it remains the case, as you no doubt know yourselves, if you have "to go", you cannot hang about.
Unfortunately my problems are now somewhat complicated due to a gastroesophageal reflux disease problem and in the past 5 years, type 11 diabetes and a hiatus hernia, complicated, for the doctors looking after me that is, from my personal point of view I honestly feel, as fit as a ratcatchers
dog.
That is despite the fact that in addition now, my routine colonoscopy November 2010, revealed a cancerous mass on my right kidney, and, along with a normal polyp removed at the time of the colonoscopy , it also showed a suspicious FLAT polyp also on the bowel, this is now also confirmed to be cancerous.
So the right kidney and cancer were completely removed in late, April some 7 months ago, and tomorrow the 29th, November, I am going for my pre-op' assessment prior to the anticipated removal of the remainder of my bowel, on December the 13th, which will result in me having a colostomy.
I have to say I believe I am most fortunate and extremely grateful that my consultant carried out that routine colonoscopy, I have had not the slightest indication of anything else being amiss, no pains, nothing, and as I said earlier, I feel as fit as a rat catchers dog.
I am not in the slightest concerned about the operation itself, but just a tad dubious about having possible problems associated dealing with the colostomy.
And finally, I do hope that you did get this far in MY STORY, without being bored etc, because for the benefit of all of you who feel nervous or concerned about having a colonoscopy, I would like to help you all by saying this, the worst of it is the inconvenience of the pre-cleansing routine, I have never yet felt the slightest pain or soreness from any part of this process including any required biopsies.
I also admit to being a very squeamish person and have to turn away when my wife insists on watching TV HOSPITAL SOAPS, and yet, I am quite at ease and find it interesting watching the surgeon carrying out the complete colonoscopy including biopsies, via the surgeon's own computer screen, as he carries out this proceedure on myself, and discussing this with him whilst he does this they seem to be quite happy that I am able to do this also.
Please do not think I am being nonchalant or blase' by stating that above fact, I have done exactly that during the last 3 colonoscopies I have had this year, and I sincerely tell you all this, merely to indicate how relaxed I am about that procedure, in the very sincere hope that it will remove any fears you may have about this.
My very best wishes to all crohnies, and whatever else you do . please do try
at least, unsweetened SOYA, in place of dairy milk, and I hope it works as well for yourselves as it continues to do for me
Best wishes.
Jack Dusty (Peter).
My problem started in 1966, just a sensation, something which felt to be about the size of a tennis ball seemed to be rotating in my tummy, which over a period of months then became the most unbearable,continual pain, all day and 24/7, I have a very high pain threshold, but this tested me to my absolute limits.
Within a very few months I looked like a Belsen survivor, see the photo's of CYCroh's Guy, in this forum and slim his worst picture down, that was me for a full TEN YEARS, prior to being diagnosed.
From a fit 11stone 4lbs (160 lbs) to barely 9stone (126 lbs) fully dressed in boots and overalls !.
My useless, disinterested local GP, in Grimsby, Linc's UK, after several visits and as my family doctor he was well aware of my normal, healthy appearance, prescribed Aludrox for an upset tummy?, which I had to pay for of course.
Despite a number of visits and after telling him I may just as well drink water for my problem, I finally was put into GY hospital for 3 days observation, I remained there for seven (7) weeks.
Apart from drawning off multiple beakers full of acid via tubes through the nose/throat to abdomen, and advising that my red/white blood cells were all over the place, I was then discharged with the advise that should the pain get any worse I should return and have the ULCER removed, I DID NOT HAVE AN ULCER.
The pain was so intense that my wife had to change the bedding 3 times nightly soaked with pain sweats.
In addition, from the outset and for a further TEN YEARS, I completely lost all sense of taste of both food and drink and was unable mostly to retain anything I did manage to eat.
I continued to work in that conditioin for a further ten years, only once taking a half day off because of this unbearable pain, finally, another pain developed in the lower right abdomen.
By this time, now 1976, we had moved home and I had been reporting to another local GP, and who by this time been made aware of my long standing problem, and the history of it for now some 18 months or so.
So his reaction to my visit regarding this latest, different pain was, " I'm afraid it is your old problem flaring up again", when I insisted that this was a different pain in a different area of my abdomen and that after ten years of the continuous pain, which I still had, did he not think that this may perhaps be my appendix?, he passed this off suggesting I may have pulled a muscle, to go home and take some asprin over the weekend.
I did just that, and worked a further 3 weeks, having to lift my right leg up, by hand, to get into my car to drive 15 miles to work to then drive a 40 ton petrol tanker 250 miles a day and cope with some quite strenuous physical pipe work etc in addition.
Finally the pain spiked, my temperature soared and I almost passed out with the pain, I saw the GP, demanding a second opinion ( my very concerned mother in law had insisted I did this, and bless her, her insisted that she also would pay for this).
The surgeon, Mr. Eddy, I saw in Grimsby was most concerned about my very sparse condition immediately he saw me stripped, I passed off his initial questions reference this, to concentrate on this latest pain.
His reactionto the GP's suggestion that this was a pulled muscle, caused him to swear and curse, saying "you have a massive abscess on your appendix and I dare not touch it it could kill you", he went on to say this was going through a " cooling process", that he would leave this for three months (I believe)treat it with anti-biotics inthe meantime then remove it.
Whilst getting dressed I heard him asking my wife about my general health in view of " Peter's very sparse condition ", my wife really laid it on the line about the above "story", and I was instructed to again strip and following a further examination, he declared that the surgeons who carried out the previous tests and examination in Grimsby hospital, in 1966, had failed to examine the lower bowel, and declared he knew what my problem was and that I may loose a few inches of bowel. He told my wife at that same time that I may well loose the complete bowel.
Mr Eddy had me taken to Grimsby hospital the following morning, under National Health, saying " you are not going to pay for the pain you have endured for the past ten years".
Following a barium enema two days later, my taste for food and drink returned for the first time in ten years, I was kept in hospital for a further 5 weeks whilst the nursing staff brought my drained physical condition to a standard to be able to cope with the operation to my bowel, in total seven weeks in hospital again, and half my bowel removed, hemi-coleptomy.
No problems , just a little sore for a few weeks after the op' and off work 6 months and two weeks, but in the first 9 weeks following the operation I had gained 49 pounds in weight!!.
I have not had the slightest twinge of any pain since that operation, though I did have a major flare up later which caused me to have severe diarrhea 17 to 20 times a day and through the night which continued for 7 more years, despite a high dose of steroids, which took many months to reduce and finally discontinue without causing further flare ups, plus azathioprine (2x50mg) daily, this was again caused by a local GP insisting on me using his prescribed anti-inflmatory medicine (for pains in the base of my thumbs) this DESPITE, the fact that I had pointed out to him that I had Crohn's disease, and thatthe enclosed leaflet with the inflamatory tablets clearly WARNED, in block letters, NOT TO BE USED WITH CROHN's disease
My consultant at Pilgrim hospital, Boston, toward the end of that 7 year flare up ( now 2003 I believe) of diarrhea, eventually increased the azathioprine to his suggested maximum dose, (which continues to date) that is 3x 50mg daily, saying at that time, that if this does not work I think we will need to remove the remainder of your bowel !
By coincidence, at that time we were required to go to Spain for a week, not for pleasure, and in addition to prescribed medications, my wife had insisted for some years that I used a lactose free milk substitute which seemed to help a little, this was not available in the local supermarket close to the hotel we stayed at, and instead Marilyn bought, unsweetened Soya milk substitute, rather than have me go back to dairy milk.
Within two days of using this my bowel movements had suddenly recovered to a maximum of 3 to 4 movements a day, mostly 3 only, and I initially put this down to a change of diet, bottled water etc in Spain.
However a week after returning to UK, bowel movements again returned to 12 plus a day, remembering the Soya, we purchased more of this unsweetened Soya from Morrisons, and within 2 days again my toilet movements dropped and this time to a maximum 0f 2 to 3 per day.
I can confirm that to this day, now 8 years later I remain on the Soya and it is most unusual if I toilet more than twice daily, and not unusually to go once only, and I rarely have diarrhea.
I would seriously highly recommend all Croh's sufferers to at least try unsweetened SOYA, and cut out dairy milk entirely whilst you try this out.
It has most certainly worked for me, 8 years is proof enough for me, and whilst the taste is strange initially, I dislike the taste of milk now when ever I have a cup of tea away from home.
Whilst my crohn's is well under control and has been for the past 8 years, I rarely give it a thought, having said that, it remains the case, as you no doubt know yourselves, if you have "to go", you cannot hang about.
Unfortunately my problems are now somewhat complicated due to a gastroesophageal reflux disease problem and in the past 5 years, type 11 diabetes and a hiatus hernia, complicated, for the doctors looking after me that is, from my personal point of view I honestly feel, as fit as a ratcatchers
dog.
That is despite the fact that in addition now, my routine colonoscopy November 2010, revealed a cancerous mass on my right kidney, and, along with a normal polyp removed at the time of the colonoscopy , it also showed a suspicious FLAT polyp also on the bowel, this is now also confirmed to be cancerous.
So the right kidney and cancer were completely removed in late, April some 7 months ago, and tomorrow the 29th, November, I am going for my pre-op' assessment prior to the anticipated removal of the remainder of my bowel, on December the 13th, which will result in me having a colostomy.
I have to say I believe I am most fortunate and extremely grateful that my consultant carried out that routine colonoscopy, I have had not the slightest indication of anything else being amiss, no pains, nothing, and as I said earlier, I feel as fit as a rat catchers dog.
I am not in the slightest concerned about the operation itself, but just a tad dubious about having possible problems associated dealing with the colostomy.
And finally, I do hope that you did get this far in MY STORY, without being bored etc, because for the benefit of all of you who feel nervous or concerned about having a colonoscopy, I would like to help you all by saying this, the worst of it is the inconvenience of the pre-cleansing routine, I have never yet felt the slightest pain or soreness from any part of this process including any required biopsies.
I also admit to being a very squeamish person and have to turn away when my wife insists on watching TV HOSPITAL SOAPS, and yet, I am quite at ease and find it interesting watching the surgeon carrying out the complete colonoscopy including biopsies, via the surgeon's own computer screen, as he carries out this proceedure on myself, and discussing this with him whilst he does this they seem to be quite happy that I am able to do this also.
Please do not think I am being nonchalant or blase' by stating that above fact, I have done exactly that during the last 3 colonoscopies I have had this year, and I sincerely tell you all this, merely to indicate how relaxed I am about that procedure, in the very sincere hope that it will remove any fears you may have about this.
My very best wishes to all crohnies, and whatever else you do . please do try
at least, unsweetened SOYA, in place of dairy milk, and I hope it works as well for yourselves as it continues to do for me
Best wishes.
Jack Dusty (Peter).
Last edited:
I hope you don't mind, but I moved your story from the existing thread you posted it in as I think it deserves it's very own thread.
