Have you ever wondered why medical secretaries/receptionists seem to think they are so much more important than everyone else? What gives them the right to speak to patients like something on the bottom of their shoe?
This week I called my new Rheumatologist's secretary to ask if she would book me in for some more steroid shots into my painful joints.. "Well, that isn't how it works.. Your GP needs to ask".. I didn't like her tone, she was rude and snooty! So I reply "it was him that told me to do it this way, and I believe what he says, no offence so could you pass on the message" obviously that went down like a lead balloon!! "All I can do us put it on his desk" which I pleasantly replied OK! I don't think she actually did it though.. Whilst I was on the phone, I decided to ask if the vascular referral had bee sent, it had been a week so it should be been,, Again, she snapped no at which point I thought I better go before I lost my patience.
I called again on Friday, then 10 days since my appointment so plenty of time to type up a referral letter. I've been in agony so I really need this sorting out.. Again, get the same snooty so-and-so, I politely asked if my letter had been sent over to the Vascular team as I'm struggling big time with my joints and can't start any treatment until this access is sorted. She again, snapped no it isn't done.. Unfortunately, this ticked me off and I snapped "It doesn't take 10 days to type a letter, this isn't good enough" she went quiet as if she had never been challenged before! Her reply was "It does as we have had a lot of staff leave, we are behind", my reply "that really isn't the fault of the patients though, is it? Why should we be made to suffer due to resourcing issues? I need that doing as I am suffering and he said it would be done promptly and like I said 10 days to type a letter isn't prompt" so that was it....... I am going to keep chasing until it's done!I can't go on in this pain, it's keeping me awake at night!
Anyway - moral of the story... Don't mess with me with I'm hormonal!!!! lol
I also need to find a new gastro consultant this week, he has been trying to overcharge bupa which is causing problems, and I've not been happy with him for awhile so just need to do a bit of research :) I'm sure it's the best decision anyway!
Hope you're all well!
Sunday 23 September 2012
Wednesday 12 September 2012
Rheumatology Appointment
Good evening!
Time for an update on today's Rheumatology Appointment. I had to drive from Milton Keynes to Kettering (about an hour) and by the time I got there, my hands and left ankle were even more swollen and really painful. I only usually drive short distances now, but had to do it today..
I got there and waited awhile before the nurse took me through I hobbled in because my ankle was giving me jip, my consultant instantly noticed and asked to see the joint.. As soon as he saw it he asked if he could convince me to start on oral steroids, which I said no, as I really do dislike the side effects from them. He then went on to have a look at other joints and said would I consider getting cortisone steroid shots into the worst effected joints at the end of the appointment as it'd help me with the pain... I agreed to that one. I'd rather that than take regular oral steroids, that's for sure!!!!
He was basically audio taping his letter to the vascular surgeons with me being there, so I could hear what he was saying. It was the first time I had heard him say that it was a definite diagnosis of Rheumatoid Arthritis based on blood and scans. He did say he was gobsmacked and disgusted that my gastro doctor finds it acceptable to only take blood whenever he feels like it when I'm on immuno drugs, and with femoral stabs for monitoring! He said he would want to be able to monitor my blood every month without fail, as it can be potentially life threatening. He also said using the central veins for long term monitoring is a no no, as it will then damage those veins like my arms and feet are. He said as soon as we figure out the access (hickman, picc or something) he will give me methotrexate to try, but he did say that some people really can't tolerate that (my gastro put a dampener on that saying it was "toxic" and pointing out all of the bad things about it!!!) I pray to god they don't meet each other as it'd be world war 3!
I tend to get sick anyway, so he's not holding up hope my body will cope with it.. The next stage is humira/infliximab which will be great for the crohns too, but hey we will see! Got to sort the access first...
Next, it was time to get shots.. The nurse and him took me through and did them. He said he couldn't believe I didn't even flinch, my response was when you've been through all the cannula problems and femoral stabs I have, that seemed pretty easy!! He said to the nurse he thought considering all I was going through I was upbeat and smiley, not always though I told him!! The nurse then piped up saying she also couldn't believe any doctor would find it acceptable to not monitor the bloods as per protocol for immunosuppresives.. But hey, my gastro can be a dick at the best of times.. Actually, make that pretty much always!!! They also gave me some super sexy wrist splints to wear... Aren't they lovely?! NOT!!! I bet you are all wishing you could join this club!!
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Talking of the gastro doc, I heard from his secretary today about my upcoming "procedure" (can hardly wait!!!) she said they are thinking 26th to be there at 4.30pm, for the op at 6pm.. I've emailed back questioning that; as if they think they are turfing me out of the hospital 2 hours after a GA they can think again. I was really sick last time and it took me some hours to come around, I can't come back around kids until I'm straight headed, especially as hubby will be in India then too. I'm wondering if i'll stay in the night... Knowing my gastro though, he'll say it's fine for me to leave that night!!! We will see! I don't think you are meant to be discharged right after a GA. Anyone know??!
Well, that's all from me.. Boring probably!! Next stop: Sehcat Bile Study Part 2 on Friday!!! ARRRRGGGHHHH!!
T
Time for an update on today's Rheumatology Appointment. I had to drive from Milton Keynes to Kettering (about an hour) and by the time I got there, my hands and left ankle were even more swollen and really painful. I only usually drive short distances now, but had to do it today..
I got there and waited awhile before the nurse took me through I hobbled in because my ankle was giving me jip, my consultant instantly noticed and asked to see the joint.. As soon as he saw it he asked if he could convince me to start on oral steroids, which I said no, as I really do dislike the side effects from them. He then went on to have a look at other joints and said would I consider getting cortisone steroid shots into the worst effected joints at the end of the appointment as it'd help me with the pain... I agreed to that one. I'd rather that than take regular oral steroids, that's for sure!!!!
He was basically audio taping his letter to the vascular surgeons with me being there, so I could hear what he was saying. It was the first time I had heard him say that it was a definite diagnosis of Rheumatoid Arthritis based on blood and scans. He did say he was gobsmacked and disgusted that my gastro doctor finds it acceptable to only take blood whenever he feels like it when I'm on immuno drugs, and with femoral stabs for monitoring! He said he would want to be able to monitor my blood every month without fail, as it can be potentially life threatening. He also said using the central veins for long term monitoring is a no no, as it will then damage those veins like my arms and feet are. He said as soon as we figure out the access (hickman, picc or something) he will give me methotrexate to try, but he did say that some people really can't tolerate that (my gastro put a dampener on that saying it was "toxic" and pointing out all of the bad things about it!!!) I pray to god they don't meet each other as it'd be world war 3!
I tend to get sick anyway, so he's not holding up hope my body will cope with it.. The next stage is humira/infliximab which will be great for the crohns too, but hey we will see! Got to sort the access first...
Next, it was time to get shots.. The nurse and him took me through and did them. He said he couldn't believe I didn't even flinch, my response was when you've been through all the cannula problems and femoral stabs I have, that seemed pretty easy!! He said to the nurse he thought considering all I was going through I was upbeat and smiley, not always though I told him!! The nurse then piped up saying she also couldn't believe any doctor would find it acceptable to not monitor the bloods as per protocol for immunosuppresives.. But hey, my gastro can be a dick at the best of times.. Actually, make that pretty much always!!! They also gave me some super sexy wrist splints to wear... Aren't they lovely?! NOT!!! I bet you are all wishing you could join this club!!
Talking of the gastro doc, I heard from his secretary today about my upcoming "procedure" (can hardly wait!!!) she said they are thinking 26th to be there at 4.30pm, for the op at 6pm.. I've emailed back questioning that; as if they think they are turfing me out of the hospital 2 hours after a GA they can think again. I was really sick last time and it took me some hours to come around, I can't come back around kids until I'm straight headed, especially as hubby will be in India then too. I'm wondering if i'll stay in the night... Knowing my gastro though, he'll say it's fine for me to leave that night!!! We will see! I don't think you are meant to be discharged right after a GA. Anyone know??!
Well, that's all from me.. Boring probably!! Next stop: Sehcat Bile Study Part 2 on Friday!!! ARRRRGGGHHHH!!
T
Monday 10 September 2012
Forgot to say..
My gastro got back from holiday, and like I predicted I got a call to summon me in to see him. He said it's time we did a scope, a ton more biopsies and balloon dilation if needed.. So I'm going in a few weeks under GA with it being so invasive.. He gave me the lovely present of moviprep as a parting gift! Yum! Can hardly wait for that!!
Sehcat Bile Study
Hey all,
Thought it was time for an update..
I had my first part of the sehcat Bile Study test on Friday at Nuclear Medicine. I was feeling really nauseous anyway, so was worried about it coming straight back out!! It was pretty easy though.. I had to swallow a radioactive capsule mixed with bile salts.. the fact you can't touch it, and have to use a different toilet from others was abit scary though! what are they putting into my body??! :-o hehe
The technician explained that I had to go back at 1.30pm (this was 9.30) so I could have a scan so they could take a reading and then I go back on Friday for a second reading, in theory you still should have some in your system if the ileum is absorbing the bile right, if the reading is too low it means it's not working right. We are kinda expecting it to come back abnormal as it isn't absorbing B12 either plus the diahrea.. I'll be surprised if there is anything left with how much time I've spent in the bathroom anyway, but we'll see! He said it'd take a further 10 days to get the results to my consultant, it better not do as I'm a private patient!!!
On Wednesday I have to go to the NHS hospital to see the Rheumatoligist about my referal to the Vascular Surgeons about venous access, we'll see what that brings! My joints have been particularly painful this week but we'll get by.. We have too! I just hope it doesn't take long so I can get the treatment.
On a lighter note, my baby girl Matilda started school!! I can't believe how grown up she is!! So proud of my babies.. I just hope they don't pick up mummy's faulty genes! here she is.. Isn't she a cutie?
I also decided to put my skills making bath products into good use with making stuff and donating all of the money to Crohn's & Colitis UK.. Please join and have a look at my facebook pag, I want to get as manypeople on as possible.. Also for awareness and support for IBD'ers www.facebook.com/crohnscolitisfundraising
Chocolate lollipops will be next once the mould arrives! Hopefully I can raise some cash for it..
Until the next time..
T
Thought it was time for an update..
I had my first part of the sehcat Bile Study test on Friday at Nuclear Medicine. I was feeling really nauseous anyway, so was worried about it coming straight back out!! It was pretty easy though.. I had to swallow a radioactive capsule mixed with bile salts.. the fact you can't touch it, and have to use a different toilet from others was abit scary though! what are they putting into my body??! :-o hehe
The technician explained that I had to go back at 1.30pm (this was 9.30) so I could have a scan so they could take a reading and then I go back on Friday for a second reading, in theory you still should have some in your system if the ileum is absorbing the bile right, if the reading is too low it means it's not working right. We are kinda expecting it to come back abnormal as it isn't absorbing B12 either plus the diahrea.. I'll be surprised if there is anything left with how much time I've spent in the bathroom anyway, but we'll see! He said it'd take a further 10 days to get the results to my consultant, it better not do as I'm a private patient!!!
On Wednesday I have to go to the NHS hospital to see the Rheumatoligist about my referal to the Vascular Surgeons about venous access, we'll see what that brings! My joints have been particularly painful this week but we'll get by.. We have too! I just hope it doesn't take long so I can get the treatment.
On a lighter note, my baby girl Matilda started school!! I can't believe how grown up she is!! So proud of my babies.. I just hope they don't pick up mummy's faulty genes! here she is.. Isn't she a cutie?
I also decided to put my skills making bath products into good use with making stuff and donating all of the money to Crohn's & Colitis UK.. Please join and have a look at my facebook pag, I want to get as manypeople on as possible.. Also for awareness and support for IBD'ers www.facebook.com/crohnscolitisfundraising
Chocolate lollipops will be next once the mould arrives! Hopefully I can raise some cash for it..
Until the next time..
T
Monday 3 September 2012
Bleugh!!!!
Quick post today...
Boy, am I tired at the moment!! I'm due a B12 shot soon and my HB was on it's way down from recent bloods so maybe if and when they sort out some kind of venous access I might get another iron infusion. I have lost blood recently and the HB dropped about 5 points in a month.. We'll see though! I felt much better after my last infusion and jab for awhile though, it's just a shame it doesn't last!!! I am still waiting to hear off my gastro about things as he got off holiday today, won't hold my breath though but we do need to address the "blockages" I keep having as something isn't right.. Hoping when I start my treatment I'll see a big improvement in everything (I hope)
Hubby is going away on business alot in the next month or so, so I'll be at home with the kids alone (Charlie 5, Matilda 4 and Oliver 2! OUCH I hear you say!!) which is interesting when you are struggling with relapses of things!! I also have to work too.. Not quite sure how I'll do just yet, but I'm sure it'll be fine! I just hope he'll be OK in India.
The mouth ulcers I woke up with a few days ago, seem to be breeding by the day!! Lots of gels and mouthwashes to be had! Do any of you other crohnies get ulcers? My mouth gets real sore during relapses and when B12 gets low..
Sunday 2 September 2012
Lots of appointments...
Hey,
How are we all? I have been feeling a bit crappy recently.. So here goes..
I saw the Rheumatologist, who immediately thought it looked like Rheumatoid arthiritis in my hands.. He sent me off for a scan and bloods urgently and back in within a week.. As they can never get blood from my arms he said if it turned out I do have RA, I'll need to consider a hickman line or something similar so they can draw blood easily and regularly for both crohn's and that..
I woke up the day after my appointment feeling really ill, I had a raging temperature and felt sick. As the day went on it kept rising and I felt even more ill, I ended up at the hospital where my CRP, ESR inflammation levels were through the roof again, I'd had severe diarrhea and stomach pains since I came out of hospital anyway so had a feeling something was going down. They put me on IV antibiotics for 48 hrs with anti sickness drugs and of course, the line blew as usual so I persuaded them to let me try them orally and go home.. The more worrying thing was I completely stopped going to the toilet so was concerned the inflammation may of narrowed again, but I thought I'd see how it went..
Thursday, it was time to have the ultrasound on my hands, ready to see him on thursday.. The consultant radiologist did it for me, he pointed out bad inflammation in both wrists and other finger joints.. He hadn't even looked at my back etc so dread to think what that was like!! He pretty much told me there and then it looked like rheumatoid arthritis but said he'd write the report up..
The next day I saw the rheumatologist and he said it was the diagnosis he thought from both the bloods and scans.. Another problem to cope with! He did say he's seen other patients with inflammatory bowel diseases end up with RA too as it's the same thing as crohn's, my immune system attacking. Luckily, the treatment for Crohn;s and RA are the same so should kill two birds with one stone! As I'm already on azathioprine and mesasaline, and it's failed.. The next stage would be methotrexate for RA but it can have an adverse effect on crohn's of you have both conditions.. Next stage is anti TNF's.. AKA REmicade/infliximab or humira.. First of all, I need to be referred to vascular surgeons to sort my line out though.. I'm back to see him 12th to arrange it all....
In the mean time, still hadn't been to the toilet and my gastro was inconveniently on holiday!! I was starting to lose appetite and feel very uncomfortable and nauseous.. I'd tried laxido and lactulose but may as well of not bothered! I managed to get a hold of my GP and begged for picolax to try and move it along before it started making me vomit.. Luckily, they agreed... For anyone who has had picolax will know what it's like... dynamite!!! It took a fair whack to get it working but boy did it work.. The problem is it gives you griping stomach ache and once you start you really can't stop... Being more than a minute away from a loo is just not an option!!! So I was up and down to the toilet all night along.. and still going!!
Anyway, I have my sehcat bile study this week (I may as well move into the hospital I hear you say!!) and no doubt I will hear from my gastro about how bad my joints are, which probably means the inflammation in the bowel is quite bad too.... He can try all he likes to talk me into a scope, it won't work!!!!!!
Til next time :)
T
How are we all? I have been feeling a bit crappy recently.. So here goes..
I saw the Rheumatologist, who immediately thought it looked like Rheumatoid arthiritis in my hands.. He sent me off for a scan and bloods urgently and back in within a week.. As they can never get blood from my arms he said if it turned out I do have RA, I'll need to consider a hickman line or something similar so they can draw blood easily and regularly for both crohn's and that..
I woke up the day after my appointment feeling really ill, I had a raging temperature and felt sick. As the day went on it kept rising and I felt even more ill, I ended up at the hospital where my CRP, ESR inflammation levels were through the roof again, I'd had severe diarrhea and stomach pains since I came out of hospital anyway so had a feeling something was going down. They put me on IV antibiotics for 48 hrs with anti sickness drugs and of course, the line blew as usual so I persuaded them to let me try them orally and go home.. The more worrying thing was I completely stopped going to the toilet so was concerned the inflammation may of narrowed again, but I thought I'd see how it went..
Thursday, it was time to have the ultrasound on my hands, ready to see him on thursday.. The consultant radiologist did it for me, he pointed out bad inflammation in both wrists and other finger joints.. He hadn't even looked at my back etc so dread to think what that was like!! He pretty much told me there and then it looked like rheumatoid arthritis but said he'd write the report up..
The next day I saw the rheumatologist and he said it was the diagnosis he thought from both the bloods and scans.. Another problem to cope with! He did say he's seen other patients with inflammatory bowel diseases end up with RA too as it's the same thing as crohn's, my immune system attacking. Luckily, the treatment for Crohn;s and RA are the same so should kill two birds with one stone! As I'm already on azathioprine and mesasaline, and it's failed.. The next stage would be methotrexate for RA but it can have an adverse effect on crohn's of you have both conditions.. Next stage is anti TNF's.. AKA REmicade/infliximab or humira.. First of all, I need to be referred to vascular surgeons to sort my line out though.. I'm back to see him 12th to arrange it all....
In the mean time, still hadn't been to the toilet and my gastro was inconveniently on holiday!! I was starting to lose appetite and feel very uncomfortable and nauseous.. I'd tried laxido and lactulose but may as well of not bothered! I managed to get a hold of my GP and begged for picolax to try and move it along before it started making me vomit.. Luckily, they agreed... For anyone who has had picolax will know what it's like... dynamite!!! It took a fair whack to get it working but boy did it work.. The problem is it gives you griping stomach ache and once you start you really can't stop... Being more than a minute away from a loo is just not an option!!! So I was up and down to the toilet all night along.. and still going!!
Anyway, I have my sehcat bile study this week (I may as well move into the hospital I hear you say!!) and no doubt I will hear from my gastro about how bad my joints are, which probably means the inflammation in the bowel is quite bad too.... He can try all he likes to talk me into a scope, it won't work!!!!!!
Til next time :)
T
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