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!!
Monday, 10 September 2012
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
Monday, 20 August 2012
It's been awhile!
I know it's been ages since I posted.. I had a bit of a bad time of 5 weeks in hospital awhile ago.. But let's move on..
Things haven't been too bad.. Have a very upset stomach still which is normal I suppose!! MY best friend is the toilet most of the time lol But I'm back to working full time now
I've been having regular bloods still and have a SEHCAT Bile study in 2 weeks to see if my ileum is managing to absorb the bile back in, so we'll see what that brings!
I also have to see a Rheumatologist on Friday as my hands are so bad at the moment, They're really swollen and sore. In the past it's only been my lower back and hips that have caused me the pain but we'll have to wait and see what they say..
Until next time..
Things haven't been too bad.. Have a very upset stomach still which is normal I suppose!! MY best friend is the toilet most of the time lol But I'm back to working full time now
I've been having regular bloods still and have a SEHCAT Bile study in 2 weeks to see if my ileum is managing to absorb the bile back in, so we'll see what that brings!
I also have to see a Rheumatologist on Friday as my hands are so bad at the moment, They're really swollen and sore. In the past it's only been my lower back and hips that have caused me the pain but we'll have to wait and see what they say..
Until next time..
Sunday, 20 May 2012
B12 shots
Hey everyone!
Hope everyone is well! I thought it was about time for an update on the past couple of weeks.. I've been working in the office a lot more, which is great!
I'm still having quite a lot of pain from my bum as it just can't heal! The doctors said we can only do what we are doing.. Keep on with the creams and starting antibiotics if I can feel it may get into another infection. It is an actual pain in the ass!
I saw my GI for my azathioprine monitoring bloods. I went through with my hubby this time, as he never usually comes. I spoke to him about the extreme exhaustion and dizziness/weakness. I had some sores at the side of my mouth which he noticed as soon as I went in, he said this is a sign of anaemia. We decided if my iron levels were low, we'd sort out an iron infusion ASAP.
He couldn't get any veins in my arm to play along (they never do!) so he went for the femoral stab! He was so gentle compared to some I've had, and he got it in first shot! He couldn't believe it when I told him a young Dr on the Emergency Assessment Unit had attemped my arms tons, my foot a few times and then my groin 5 very painful times before I told him I'd had enough as he was useless! He didn't get any blood out! My consultant made it look easy peasy though! He said he'd rush through the results as he thought I looked really pale and tired. Whilst we were going through my medication, I mentioned I've been taking B12 since last year each day, he said he'd forgotten to tick the box on the blood request form for that, so he went and did it straight away as from looking on the computer system, for some reason it looks like no one has checked my B12 levels since last year when I was advised to take it because it was low because of the crohns being in my ileum.
The next afternoon, I hear from him as promised. He said my iron stores aren't too bad at the moment but my B12 & folic acid was very low which would explain all of the symptoms I've been having with the exhaustion, dizziness, sore mouth etc He said I was was to have 5 B12 jabs in a 2 week period to boost the levels, and then I'd need to have one every 3 months to try and maintain it at a normal level. Even though I had been taking extra B12 vitamins my body wasn't absorbing it from food or the vitamins because the ileum does all that. He said the shots bypass using the gut so they work much better is crohn's patients. If anyone has any experiences of the B12 shots, I'd love to hear how they worked for you :)
So, I had my first shot on Friday morning. I woke up feeling abit sick anyway but put it down to something I'd eaten the day before. I went over to the GP and felt really odd, got the shot and got a taxi to get home. I tried so hard not to spew in the taxi but after keeping it down twice, it just came up so forcefully! I was so embarassed, I can't even tell you how much!! He managed to pull over so I could carry on being sick by the road. By this stage my brain felt like it was trying to escape out of my eye & I had blurred vision which meant a migraine! I kept apoligizing to the polish taxi man even though hardly anything got on his car as it went over me and a some in my bag (yuk! not sorted that yet whilst feeling queasy) anyway, I was throwing up all day Friday through to Saturday midday ish! I couldn't keep any antisickness meds (or anything else) but thankfully the vomitting has stopped, still feel very sick and queasy but managing to take pills to help that. I still have a terrible headache today too and still feel totally spaced out. I'm hoping by tomorrow for work. I was meant to go to a Supernatural Convention this weekend too, but have felt way too ill! A 3 day migraine sucks!! ugh!!
Hope everyone is well! I thought it was about time for an update on the past couple of weeks.. I've been working in the office a lot more, which is great!
I'm still having quite a lot of pain from my bum as it just can't heal! The doctors said we can only do what we are doing.. Keep on with the creams and starting antibiotics if I can feel it may get into another infection. It is an actual pain in the ass!
I saw my GI for my azathioprine monitoring bloods. I went through with my hubby this time, as he never usually comes. I spoke to him about the extreme exhaustion and dizziness/weakness. I had some sores at the side of my mouth which he noticed as soon as I went in, he said this is a sign of anaemia. We decided if my iron levels were low, we'd sort out an iron infusion ASAP.
He couldn't get any veins in my arm to play along (they never do!) so he went for the femoral stab! He was so gentle compared to some I've had, and he got it in first shot! He couldn't believe it when I told him a young Dr on the Emergency Assessment Unit had attemped my arms tons, my foot a few times and then my groin 5 very painful times before I told him I'd had enough as he was useless! He didn't get any blood out! My consultant made it look easy peasy though! He said he'd rush through the results as he thought I looked really pale and tired. Whilst we were going through my medication, I mentioned I've been taking B12 since last year each day, he said he'd forgotten to tick the box on the blood request form for that, so he went and did it straight away as from looking on the computer system, for some reason it looks like no one has checked my B12 levels since last year when I was advised to take it because it was low because of the crohns being in my ileum.
The next afternoon, I hear from him as promised. He said my iron stores aren't too bad at the moment but my B12 & folic acid was very low which would explain all of the symptoms I've been having with the exhaustion, dizziness, sore mouth etc He said I was was to have 5 B12 jabs in a 2 week period to boost the levels, and then I'd need to have one every 3 months to try and maintain it at a normal level. Even though I had been taking extra B12 vitamins my body wasn't absorbing it from food or the vitamins because the ileum does all that. He said the shots bypass using the gut so they work much better is crohn's patients. If anyone has any experiences of the B12 shots, I'd love to hear how they worked for you :)
So, I had my first shot on Friday morning. I woke up feeling abit sick anyway but put it down to something I'd eaten the day before. I went over to the GP and felt really odd, got the shot and got a taxi to get home. I tried so hard not to spew in the taxi but after keeping it down twice, it just came up so forcefully! I was so embarassed, I can't even tell you how much!! He managed to pull over so I could carry on being sick by the road. By this stage my brain felt like it was trying to escape out of my eye & I had blurred vision which meant a migraine! I kept apoligizing to the polish taxi man even though hardly anything got on his car as it went over me and a some in my bag (yuk! not sorted that yet whilst feeling queasy) anyway, I was throwing up all day Friday through to Saturday midday ish! I couldn't keep any antisickness meds (or anything else) but thankfully the vomitting has stopped, still feel very sick and queasy but managing to take pills to help that. I still have a terrible headache today too and still feel totally spaced out. I'm hoping by tomorrow for work. I was meant to go to a Supernatural Convention this weekend too, but have felt way too ill! A 3 day migraine sucks!! ugh!!
Thursday, 3 May 2012
Hi All!
It's been a little while since I posted, I hope everyone is OK.
I've not had the best time as of late. I have had a very troublesome anal fissure for years now, and with being constipated with IBS in large bowel and crohns in the small it never heals and instead just breaks open and bleeds and the cycle starts again, also the same with suffer recurrent mouth ulcers.I've been fortunate enough to avoid any anal infections/abscesses until now.
I managed to convince my GP to give me a chance with some strong antibiotics before I would go to the hospital, the last thing I wanted was someone poking at it!! I had augmenten (co-moxicklav, metronisadole and cipflexin along with cream. Sitting down was a real issue, luckily I worked from home so I could arrange the cushions and take plenty of rest. The worth thing about it is that I am going through a constipated phase at the moment, and obviously going to the toilet is hell! Could yell the house down it's so painful!!! My doctor gave me oramorph as he said he'd advise I had that for the pain. I have seen an improvement so hoping that means the drugs are working, I have to go back on Tuesday for my monthly azathioprine bloods so I'm guessing they'll check then. Hopefully, I won't need to go to any hospital, I am losing faith in Northampton General as they seem to be clueless about crohns etc, I am thinking of being referred to a hospital with a better reputation and proper crohn's nurses etc. My current consultant is anti any opiates for pain relief, which I think is appauling with how much pain
It's been a little while since I posted, I hope everyone is OK.
I've not had the best time as of late. I have had a very troublesome anal fissure for years now, and with being constipated with IBS in large bowel and crohns in the small it never heals and instead just breaks open and bleeds and the cycle starts again, also the same with suffer recurrent mouth ulcers.I've been fortunate enough to avoid any anal infections/abscesses until now.
I managed to convince my GP to give me a chance with some strong antibiotics before I would go to the hospital, the last thing I wanted was someone poking at it!! I had augmenten (co-moxicklav, metronisadole and cipflexin along with cream. Sitting down was a real issue, luckily I worked from home so I could arrange the cushions and take plenty of rest. The worth thing about it is that I am going through a constipated phase at the moment, and obviously going to the toilet is hell! Could yell the house down it's so painful!!! My doctor gave me oramorph as he said he'd advise I had that for the pain. I have seen an improvement so hoping that means the drugs are working, I have to go back on Tuesday for my monthly azathioprine bloods so I'm guessing they'll check then. Hopefully, I won't need to go to any hospital, I am losing faith in Northampton General as they seem to be clueless about crohns etc, I am thinking of being referred to a hospital with a better reputation and proper crohn's nurses etc. My current consultant is anti any opiates for pain relief, which I think is appauling with how much pain
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