my longwinded story
Hi my name is Jeff and here goes!
This is a quick rundown of my symptoms then my story.
I have ulcerative colitis/ crohns; this is what my G.I doc calls it! I eat food it digests breaks down a bit travels through my small intestine till the end where it stops due to food getting stuck in the strictured parts, French fries in particular are very bad for it, when the food moves through there is extreme pain when I vomit it all up it takes about 3-4 hours and once again extreme pain! It does not really matter what I eat it all hurts, a liquid diet seems to be one of the best things I have found but I am so sick of drinking for nourishment.
It was summer of 1992 when I first started to notice problems, I was 15 at the time, I had a few wet farts during July and august so I went to the doctor and he made me do some special diet and bring him back stool samples, nice. So I did as he requested and we got nowhere he sent me for bloodworm and once again nothing, so he basically left it at that and life went on. I got used to the way my stomach was acting and basically took it as a fact of life. Over the next few years it got worse I started to learn what foods worked for me and what foods did not, but I was very stubborn as well and I really did not care, nothing was going to take pizza and hamburgers away from me. I got married when I was 22. About 6 months after our wedding I started to get worse, missing lots of time from work and going through many jobs, doctor was clueless and so were the other doctors in the area and I was very frustrated with it all and basically gave up on them figuring when it’s that bad I will spend the 16 hr wait in the ER.
About 2 months before my 24th birthday I started to get very ill I weighed about 260 at the time and I’m 6’1”. over the next 5 months I lost about 80lbs I finally got in to see a G.I Doc in Red Deer AB, and he booked me for a barium x-ray the mouth scope (Can’t remember the proper name) and everyone’s favourite the colonoscopy. Before the ceroscopy he tells me that he thinks it may be all in my head, he is really lucky my dad did not give him a punch in the head and tell him the same, so finally on the colonoscopy he found it and it was brutal, could see ulcers and all sorts of nastiness in the pic , so he starts me on prednisone and pentasa, well by this time it is late 2001 and I am down to about 155 , I vomit every other day at least if not ill every day I hurt so much I just wanted to die, my doc would not give me anything for pain and told me that it should not hurt the drugs will do it all, so here comes my dark side, I had to rely on pot to get myself under control when I would be vomiting for 3-4 hours on end if I smoked I could at least get some fluids in me and maybe some Tylenol as useless as it was. Pot saved my life. Anyways I did those drugs for a few months continued to get sick, had my son to support as my wife had left me for a while, we were young she was 4 years younger, I really think she just could not take it anymore, we did get back together after a bit, Anyways, wow sorry for rambling, time to taper from prednisone, well I got extremely sick, down to 140lbs, so I saw my family doc and he sent me to a diff doc in Calgary, I saw that doc in the middle of April, the same day as our first appt he sent me for a barium fluoroscopy , my small intestine was very thick and basically closed off from the last 12 inches of small intestine strictured off to about a hair, so he introduced me to my surgeon and the surgeon told me about the procedure which was laparoscopic and said that my surgery would be about 2 months down the road but seeing that it is so bad if you r sick come in to the ER and you will have your surgery, so 7 days later I was still deathly ill from the barium( I was totally plugged up) 10 days after my initial visit with my G.I doc I was under the knife, surgery went ok, they had a air lock in my bladder and after not filling up the pee bag they discovered the problem, I remember waking up in the most pain I had ever felt, screaming my head off and a nurse telling me to hit the button if it hurts, they removed 2.5 litres of urine from me, ouch! I saw my surgeon the next day and was told I have lots of trace of crohns in my small intestine, they removed 12 inches of small and 2” of large as it shares the same blood group, my small was 3 inches thick and completely closed off it was loaded with ulcers (I really think they are what I had been feeling for years). I felt great after that! I had to do the usual taper off the prednisone again and then I was put on Imuran which I was on for 4 years after that.
March of 2005 I had not been feeling the greatest so saw G.I doc and had a colonoscopy at the end of the month it revealed that it was back in the same area which I was told before would probably happen. Continued on the Imuran for a while, and just watched my diet (I truly believe that I know my body better than anyone) went through a lot of life changes like separation and custody battles all that fun stuff had a bilateral hernia surgery as well in 06.
December of 2007 I started to flare up big time but I would only be sick for a day or two, saw G.I doc and went on endocort as with all other drugs it did nothing for me and I continued to get sicker, had a colonoscopy late may it was totally there strictured off to a pen at the time!
Now My doc wants me to be on humira which I am not too pleased about, I need to get new teeth before I can go on this stuff and all I really want is surgery, I have been totally active with the crohns since the beginning of may and I am so sick of it My family doc is awesome he gives me oxycodone for the pain and to slow down my stomach, the stuff really helps It makes it so I can go to the bathroom only 1 or 2 times a day instead of 12-15 times I don’t get ill as often but I know it only a patch until I get surgery. I feel as if my G.I doc has gone from quality to quantity and it makes me absolutely miserable. All he is doing is delaying the inevitable. So I sit at home playing on the net and reading this forum site, very glad to see other peoples stories and see the hints and remedies that everyone has, I know a lot of people don’t agree with the oxycodone and I was very scared at one time when I used to take Percocet for my groin and nerve damage in my leg but I do deserve some quality and comfort in life and when a person truly needs the relief they do not get addicted (somewhat). I am just totally sick of the drugs and all the crap that comes with it I always said after last time that i just want to have pain control and let it do its thing till surgery, if my body reacted to the drugs then it would be a different story.
Thanks, sorry for being so long winded I look forward to communicating with you all on this awesome forum!
Ttys
Jeff
Hi my name is Jeff and here goes!
This is a quick rundown of my symptoms then my story.
I have ulcerative colitis/ crohns; this is what my G.I doc calls it! I eat food it digests breaks down a bit travels through my small intestine till the end where it stops due to food getting stuck in the strictured parts, French fries in particular are very bad for it, when the food moves through there is extreme pain when I vomit it all up it takes about 3-4 hours and once again extreme pain! It does not really matter what I eat it all hurts, a liquid diet seems to be one of the best things I have found but I am so sick of drinking for nourishment.
It was summer of 1992 when I first started to notice problems, I was 15 at the time, I had a few wet farts during July and august so I went to the doctor and he made me do some special diet and bring him back stool samples, nice. So I did as he requested and we got nowhere he sent me for bloodworm and once again nothing, so he basically left it at that and life went on. I got used to the way my stomach was acting and basically took it as a fact of life. Over the next few years it got worse I started to learn what foods worked for me and what foods did not, but I was very stubborn as well and I really did not care, nothing was going to take pizza and hamburgers away from me. I got married when I was 22. About 6 months after our wedding I started to get worse, missing lots of time from work and going through many jobs, doctor was clueless and so were the other doctors in the area and I was very frustrated with it all and basically gave up on them figuring when it’s that bad I will spend the 16 hr wait in the ER.
About 2 months before my 24th birthday I started to get very ill I weighed about 260 at the time and I’m 6’1”. over the next 5 months I lost about 80lbs I finally got in to see a G.I Doc in Red Deer AB, and he booked me for a barium x-ray the mouth scope (Can’t remember the proper name) and everyone’s favourite the colonoscopy. Before the ceroscopy he tells me that he thinks it may be all in my head, he is really lucky my dad did not give him a punch in the head and tell him the same, so finally on the colonoscopy he found it and it was brutal, could see ulcers and all sorts of nastiness in the pic , so he starts me on prednisone and pentasa, well by this time it is late 2001 and I am down to about 155 , I vomit every other day at least if not ill every day I hurt so much I just wanted to die, my doc would not give me anything for pain and told me that it should not hurt the drugs will do it all, so here comes my dark side, I had to rely on pot to get myself under control when I would be vomiting for 3-4 hours on end if I smoked I could at least get some fluids in me and maybe some Tylenol as useless as it was. Pot saved my life. Anyways I did those drugs for a few months continued to get sick, had my son to support as my wife had left me for a while, we were young she was 4 years younger, I really think she just could not take it anymore, we did get back together after a bit, Anyways, wow sorry for rambling, time to taper from prednisone, well I got extremely sick, down to 140lbs, so I saw my family doc and he sent me to a diff doc in Calgary, I saw that doc in the middle of April, the same day as our first appt he sent me for a barium fluoroscopy , my small intestine was very thick and basically closed off from the last 12 inches of small intestine strictured off to about a hair, so he introduced me to my surgeon and the surgeon told me about the procedure which was laparoscopic and said that my surgery would be about 2 months down the road but seeing that it is so bad if you r sick come in to the ER and you will have your surgery, so 7 days later I was still deathly ill from the barium( I was totally plugged up) 10 days after my initial visit with my G.I doc I was under the knife, surgery went ok, they had a air lock in my bladder and after not filling up the pee bag they discovered the problem, I remember waking up in the most pain I had ever felt, screaming my head off and a nurse telling me to hit the button if it hurts, they removed 2.5 litres of urine from me, ouch! I saw my surgeon the next day and was told I have lots of trace of crohns in my small intestine, they removed 12 inches of small and 2” of large as it shares the same blood group, my small was 3 inches thick and completely closed off it was loaded with ulcers (I really think they are what I had been feeling for years). I felt great after that! I had to do the usual taper off the prednisone again and then I was put on Imuran which I was on for 4 years after that.
March of 2005 I had not been feeling the greatest so saw G.I doc and had a colonoscopy at the end of the month it revealed that it was back in the same area which I was told before would probably happen. Continued on the Imuran for a while, and just watched my diet (I truly believe that I know my body better than anyone) went through a lot of life changes like separation and custody battles all that fun stuff had a bilateral hernia surgery as well in 06.
December of 2007 I started to flare up big time but I would only be sick for a day or two, saw G.I doc and went on endocort as with all other drugs it did nothing for me and I continued to get sicker, had a colonoscopy late may it was totally there strictured off to a pen at the time!
Now My doc wants me to be on humira which I am not too pleased about, I need to get new teeth before I can go on this stuff and all I really want is surgery, I have been totally active with the crohns since the beginning of may and I am so sick of it My family doc is awesome he gives me oxycodone for the pain and to slow down my stomach, the stuff really helps It makes it so I can go to the bathroom only 1 or 2 times a day instead of 12-15 times I don’t get ill as often but I know it only a patch until I get surgery. I feel as if my G.I doc has gone from quality to quantity and it makes me absolutely miserable. All he is doing is delaying the inevitable. So I sit at home playing on the net and reading this forum site, very glad to see other peoples stories and see the hints and remedies that everyone has, I know a lot of people don’t agree with the oxycodone and I was very scared at one time when I used to take Percocet for my groin and nerve damage in my leg but I do deserve some quality and comfort in life and when a person truly needs the relief they do not get addicted (somewhat). I am just totally sick of the drugs and all the crap that comes with it I always said after last time that i just want to have pain control and let it do its thing till surgery, if my body reacted to the drugs then it would be a different story.
Thanks, sorry for being so long winded I look forward to communicating with you all on this awesome forum!
Ttys
Jeff
