First off I'd like to say I'm really glad to have found this forum, what a great resource!
When I was first diagnosed in 94 there really wasn't anything like it and I had to resort to the medical library to find out more about what ailed me.
And sorry to have written a novel but it feels good to get it off my chest and I've tried to keep it short, really......
Having grown up in Asia I've always had a lot of diarrhoea which was dismissed by doctors as something "normal" for Europeans. It wasn't until a trip to Mexico and later Thailand that it started in earnest and after losing 10 kilo's in a few weeks I finally had a series of tests including a colonoscopy which showed "classic" symptoms of pan colitis. I was put on 40mg of pred but every time I tapered to around 10mg symptoms came back so 150 mg of Imuran was added. This gave me severe (aplastic?) anaemia and a blood transfusion was suggested but luckily stopping the Imuran sorted it. After about a year on pred we restarted the Imuran but at a lower dose, 50mg, which finally allowed me to stop the pred altogether. By that time I had moonface so bad people stared at me in the street, I gained 20 kg's and osteoporosis had started.
My Gi had suggested that maybe it was time to have my colon removed but I wasn't ready for that and now I'm really happy about that!
Fast forward 20 years and a move from Europe to New Zealand somewhere in between. I've been off medication for years now and things were going reasonably well, still a lot of diarrhoea and careful low fibre meals but altogether a reasonable quality of life. I did see a few different Gastro's to see if there was anything they could do but none of them had a silver bullet and most were more focussed on treating symptoms rather than the cause. One did test for gluten intolerance and while doing that figured out I'm IGa deficient but lucky for me not Coeliac and also did a lactose breath test which did show I'm moderate to severely lactose
intolerant. I looooove cheese, the smellier the better so this was a bit of a setback but no real surprise.
The last 10 years or so I've been having partial blockages a few times a year to the point that I went to the emergency department 3 times to get x-rayed. All these x-rays showed I had strictures but nothing ever happened after that, they resolved with or without morphine, usually by vomiting a lot, the GI said well that was lucky and off I went.:eek2: I also had a really painful fissure that wouldn't heal.
There was no inflammation to be seen in my blood work so despite the above issues they decided I probably had IBS :ymad: Of course the ulcerative colitis diagnosis also didn't count as that was from a different country so the "not invented here" gene reared it's ugly head and to be honest I don't think they even believed I ever saw a specialist then until I brought in the paperwork...:ymad:
Not surprisingly I was starting to get a bit fed up with this lack of action and this time the GI said well maybe it's time for a CT scan.
For contrast they wanted me to drink 2 litres of Metamucil. I said this really really didn't sound like a good idea to me and was there an alternative? No there wasn't ( yeah right!) and if I didn't want to scan to fail I needed to comply. They said it in a nice way but the message was clear. As I was having a bit of a blockage at the time I figured I might as well as there might finally be enough to see to get some action. How right I was!
I drove home feeling horrible and a few hours later called the GI's office to say the blockage was now complete and what should I do? They had just got the images and could see several strictures so said I should get myself to the ED double quick and there would be a referral waiting for me there.
The triage nurse decided to ignore the referral and left me in the waiting room just about falling off my chair in pain and when she finally called me asked if I'd seen the GI today and when I said I hadn't she said well this is wrong then, pointing at the fax and almost threw it in the bin.
At this point I was ready to strangle her and yelled something like have you heard of a phone and I think she got the point finally!
I was admitted and ended up staying 5 days in total. I vomited throughout the night and carried on vomiting after they inserted a ng tube. My poor roomies got no sleep at all and they were even pressing the nurse button on my behalf most of the time for more morphine and buckets to vomit in.
In the morning the surgeon came with 4 students, he had to wait until I finished vomiting and then managed to ask how I was doing :rof: really, what was he thinking???
He then said he wasn't operating on me because he hadn't done a resection for over 10 years but I was on his shift so he'd come see me every day, well hooray! Apparently the surgeon I wanted was on holiday so I better get better! I did appreciate his honesty and it sure focussed my mind on getting my bowels moving!
I had lots of hydrocortisone, 400mg I think and after 4days of nil by mouth and getting rid of all the Metamucil through vomiting and the gn tube finally something started moving and I was allowed home on day 5, phew! I was put on 60mg of Pred which drove me completely mad, rroid rage like you wouldn't believe, no sleeping of course and a hazy brain among other things.
Recovery was slow, I spent at least a week on the couch and then slowly started moving. I still couldn't eat solids, every time I tried I had another partial blockage. So I stuck to soups and mashes and went to my next GI appointment hoping for a plan. How wrong I was! First I saw the nurse who gave me a lot of info some of which was interesting, after all it had been 20 years since I was last ill, but most of it I knew already and I was just hoping for a way forward. Over the next 2 months I saw the registrar twice who was also lovely but not enabled enough to make decisions that got me somewhere.
By this time I had decided that an operation was probably inevitable and had asked if that line of thinking was likely to be correct. They said yes it probably was but other than tapering the pred and putting me on 50mg of Imuran (Azamun it's called here) nothing happened.
What is that? Don't we all have a life to lead, jobs to go to and plans to make???
Finally the last time I saw her I asked what exactly we were waiting for and she went to ask the GI himself and he agreed that surgery was probably the next step, whoopee :ybatty:.
I managed to get an urgent appointment with the surgeon and when I explained my symptoms was booked in for the next week :eek2:
I had a laparoscopically assisted resection last month and 50cm of small bowel was removed. He was worried he hadn't removed enough as there was a lot more inflammation than he was anticipating and it looked like I still had a blockage when I woke up. In hindsight it was probably a paralytic ileus (sp?) which took another 4 days of nil by mouth and lots of hydrocortisone to clear. I spent 6 days in hospital this time with remarkably little pain. They had me out of bed on the afternoon of the op and I showered by myself the day after. I had morphine the first night but stopped that when there were zero bowel sounds and I didn't really miss it. I had Tramadol and panadol (paracetamol or Tylenol in the US) which worked fine. The blockage also didn't hurt, probably because I didn't add anything to the system? The surgeon was starting to mention that a second operation might be in order but after around 4 days gas started moving extremely loudly, one of the nurses said it sounded like it came from the centre of the earth
, and a day after explosive diarrhoea started, for once I was happy with that!
Once home I developed a bad cold, coughing and sneezing is no fun with 4 holes in your belly! I carried a pillow to hold against my stomach with me, invaluable!
Other than the cold recovery has been really good and I've been working from home the last week and going to the office part time next week.
I feel a lot better than I did before the op and can already eat more than I could before. I only go in the morning now and that's something I'm really not used to Everything feels sluggish but I have no pain and only a minor cramp now and again, could this be the new normal???? My biggest wish is to be able to eat a salad now summer (southern hemisphere) is about to start, I'm done with soup and mash!:tongue:
I'm seeing my GI in person next week for the first time in 3 months and I'm really wondering what the next steps will be. Am I right in thinking this time there will be a plan? The surgeon has mentioned Humira as the next step to keep inflammation at bay. From what I've read on here that sounds like a reasonable idea, especially as I've also got arthritis and Humira might help for that as well.
The arthritis went away completely both times on hydrocortisone but came back with a vengeance once back on pred only.
Or would staying on Azathioprine only suffice?
Anyway, those of you that have made it this far, thanks for reading!
When I was first diagnosed in 94 there really wasn't anything like it and I had to resort to the medical library to find out more about what ailed me.
And sorry to have written a novel but it feels good to get it off my chest and I've tried to keep it short, really......
Having grown up in Asia I've always had a lot of diarrhoea which was dismissed by doctors as something "normal" for Europeans. It wasn't until a trip to Mexico and later Thailand that it started in earnest and after losing 10 kilo's in a few weeks I finally had a series of tests including a colonoscopy which showed "classic" symptoms of pan colitis. I was put on 40mg of pred but every time I tapered to around 10mg symptoms came back so 150 mg of Imuran was added. This gave me severe (aplastic?) anaemia and a blood transfusion was suggested but luckily stopping the Imuran sorted it. After about a year on pred we restarted the Imuran but at a lower dose, 50mg, which finally allowed me to stop the pred altogether. By that time I had moonface so bad people stared at me in the street, I gained 20 kg's and osteoporosis had started.
My Gi had suggested that maybe it was time to have my colon removed but I wasn't ready for that and now I'm really happy about that!
Fast forward 20 years and a move from Europe to New Zealand somewhere in between. I've been off medication for years now and things were going reasonably well, still a lot of diarrhoea and careful low fibre meals but altogether a reasonable quality of life. I did see a few different Gastro's to see if there was anything they could do but none of them had a silver bullet and most were more focussed on treating symptoms rather than the cause. One did test for gluten intolerance and while doing that figured out I'm IGa deficient but lucky for me not Coeliac and also did a lactose breath test which did show I'm moderate to severely lactose
intolerant. I looooove cheese, the smellier the better so this was a bit of a setback but no real surprise.
The last 10 years or so I've been having partial blockages a few times a year to the point that I went to the emergency department 3 times to get x-rayed. All these x-rays showed I had strictures but nothing ever happened after that, they resolved with or without morphine, usually by vomiting a lot, the GI said well that was lucky and off I went.:eek2: I also had a really painful fissure that wouldn't heal.
There was no inflammation to be seen in my blood work so despite the above issues they decided I probably had IBS :ymad: Of course the ulcerative colitis diagnosis also didn't count as that was from a different country so the "not invented here" gene reared it's ugly head and to be honest I don't think they even believed I ever saw a specialist then until I brought in the paperwork...:ymad:
Not surprisingly I was starting to get a bit fed up with this lack of action and this time the GI said well maybe it's time for a CT scan.
For contrast they wanted me to drink 2 litres of Metamucil. I said this really really didn't sound like a good idea to me and was there an alternative? No there wasn't ( yeah right!) and if I didn't want to scan to fail I needed to comply. They said it in a nice way but the message was clear. As I was having a bit of a blockage at the time I figured I might as well as there might finally be enough to see to get some action. How right I was!
I drove home feeling horrible and a few hours later called the GI's office to say the blockage was now complete and what should I do? They had just got the images and could see several strictures so said I should get myself to the ED double quick and there would be a referral waiting for me there.
The triage nurse decided to ignore the referral and left me in the waiting room just about falling off my chair in pain and when she finally called me asked if I'd seen the GI today and when I said I hadn't she said well this is wrong then, pointing at the fax and almost threw it in the bin.
At this point I was ready to strangle her and yelled something like have you heard of a phone and I think she got the point finally!
I was admitted and ended up staying 5 days in total. I vomited throughout the night and carried on vomiting after they inserted a ng tube. My poor roomies got no sleep at all and they were even pressing the nurse button on my behalf most of the time for more morphine and buckets to vomit in.
In the morning the surgeon came with 4 students, he had to wait until I finished vomiting and then managed to ask how I was doing :rof: really, what was he thinking???
He then said he wasn't operating on me because he hadn't done a resection for over 10 years but I was on his shift so he'd come see me every day, well hooray! Apparently the surgeon I wanted was on holiday so I better get better! I did appreciate his honesty and it sure focussed my mind on getting my bowels moving!
I had lots of hydrocortisone, 400mg I think and after 4days of nil by mouth and getting rid of all the Metamucil through vomiting and the gn tube finally something started moving and I was allowed home on day 5, phew! I was put on 60mg of Pred which drove me completely mad, rroid rage like you wouldn't believe, no sleeping of course and a hazy brain among other things.
Recovery was slow, I spent at least a week on the couch and then slowly started moving. I still couldn't eat solids, every time I tried I had another partial blockage. So I stuck to soups and mashes and went to my next GI appointment hoping for a plan. How wrong I was! First I saw the nurse who gave me a lot of info some of which was interesting, after all it had been 20 years since I was last ill, but most of it I knew already and I was just hoping for a way forward. Over the next 2 months I saw the registrar twice who was also lovely but not enabled enough to make decisions that got me somewhere.
By this time I had decided that an operation was probably inevitable and had asked if that line of thinking was likely to be correct. They said yes it probably was but other than tapering the pred and putting me on 50mg of Imuran (Azamun it's called here) nothing happened.
What is that? Don't we all have a life to lead, jobs to go to and plans to make???
Finally the last time I saw her I asked what exactly we were waiting for and she went to ask the GI himself and he agreed that surgery was probably the next step, whoopee :ybatty:.
I managed to get an urgent appointment with the surgeon and when I explained my symptoms was booked in for the next week :eek2:
I had a laparoscopically assisted resection last month and 50cm of small bowel was removed. He was worried he hadn't removed enough as there was a lot more inflammation than he was anticipating and it looked like I still had a blockage when I woke up. In hindsight it was probably a paralytic ileus (sp?) which took another 4 days of nil by mouth and lots of hydrocortisone to clear. I spent 6 days in hospital this time with remarkably little pain. They had me out of bed on the afternoon of the op and I showered by myself the day after. I had morphine the first night but stopped that when there were zero bowel sounds and I didn't really miss it. I had Tramadol and panadol (paracetamol or Tylenol in the US) which worked fine. The blockage also didn't hurt, probably because I didn't add anything to the system? The surgeon was starting to mention that a second operation might be in order but after around 4 days gas started moving extremely loudly, one of the nurses said it sounded like it came from the centre of the earth
, and a day after explosive diarrhoea started, for once I was happy with that!Once home I developed a bad cold, coughing and sneezing is no fun with 4 holes in your belly! I carried a pillow to hold against my stomach with me, invaluable!
Other than the cold recovery has been really good and I've been working from home the last week and going to the office part time next week.
I feel a lot better than I did before the op and can already eat more than I could before. I only go in the morning now and that's something I'm really not used to
Everything feels sluggish but I have no pain and only a minor cramp now and again, could this be the new normal???? My biggest wish is to be able to eat a salad now summer (southern hemisphere) is about to start, I'm done with soup and mash!:tongue:I'm seeing my GI in person next week for the first time in 3 months and I'm really wondering what the next steps will be. Am I right in thinking this time there will be a plan? The surgeon has mentioned Humira as the next step to keep inflammation at bay. From what I've read on here that sounds like a reasonable idea, especially as I've also got arthritis and Humira might help for that as well.
The arthritis went away completely both times on hydrocortisone but came back with a vengeance once back on pred only.
Or would staying on Azathioprine only suffice?
Anyway, those of you that have made it this far, thanks for reading!
