Hey,
Just a quick update today as I'm on my phone. I haven't felt too great this last while if I'm brutally honest, but hey all in the life of a crohnie!
I saw a new gastro last night, he seemed lovely. He agrees with the rheumatologist that I need anti-TNF biologicals.. With it being expensive the previous doctors seemed to just skirt around it, which has annoyed me quite a lot looking back as the last two years I've been left to suffer and get on with it! Him and the rheum had met up to discuss everything beforehand, neither could believe what's been going on..
To cut a long story short, I need to have the gastroscopy and colonoscopy under GA to check for narrowings and dilate any strictures if possible. I also need to have a repeat capsule endoscopy to check progress of the crohns over the last year or so since my last investigations.. Means to an end, it's gotta be done! We'll see what that brings!
Both consultants are chasing the insertion of the Hickman line though as I can't start any treatment until that's in place. The gastro wants me to have infliximab infusions through it, whereas I think my rheumatologist would rather me have humira, not sure why other than he says I wouldn't need to plan my life around hospital. I suppose I need to have the option of both eventually anyway. We'll see, if I have a Hickman in I'd probably rather use that for infliximab than jab myself every 2 weeks or whatever with
I have just booked a trip to Vegas for 5 nights next month so hoping it'll be ok!!!! I need a break
Bye for now
Wednesday 17 October 2012
Tuesday 9 October 2012
Update from my world..
Hey everyone!
Hope you are all well, and no one is suffering to badly with anything!
I have just had a short (ish) stint in hospital (5 days)
I'd been having some issues with going to the loo; tried everything but the situation just got worse. I started to feel really very sick all the time and knew I needed some help when I started to get a fever. I thought it'd be a case of a couple of days laxatives and I'd be cool! I was wrong!
I went down to the hospital and I was admitted straight away, the usual abdo x-rays, bloods and lots of issues cannulating and getting blood (still waiting on the hickman line) my blood pressure was low and heat rate was at 140BPM as was in quite a bit of pain, whole colon was spasming like no ones business and I had pain higher up. I was being pretty sick by this stage too.
The next thing I had a consultant down who said I needed to be catheterised and the old NG tube down immediately and lots of fluids as I was dehydrated and I'd need 2 different strong IV antibiotics.
It came back that I had a bowel infection from a crohn's exacerbation and my bowel just stopped working for awhile . Thankfully, a couple of days and it kicked back into action (with some laxatives) and I started to feel a bit more human! The doctors were pretty worried at some points with the severity of the tachycardia but I came out of it at least!!
Whilst I was in, I started getting the sores around my mouth and a real sore throat (which I put down to the NG tube, yuk!!!0 and a rash on my hands and feet.. I asked the doctor if he thought it was a reaction to the IV antibiotics (although I have had both of them before with no issues) and he thought no, it was probably a heat rash as I was quite warm. I was so glad to get home! I had to log on to work from home the next day; I hate letting them down! :(
The next day I felt completely snotty and coldy.. Rash was worse, so was sores around my mouth! I thought I'd ring my GP about getting something for my mouth as was worried about it getting infected with my lower immune system as it was very painful! I went across and they thought I had picked up hand, foot and mouth virus from the hospital!! How much bad luck can a person have??! lol I got steroid creams and antibiotic cream from my mouth (was already on 2 oral antibiotics) and told I was probably contagious, but people with a normal immune system would fight it off easily. I still didn't want to risk going into the office in case there were people with lowered systems, like me.. Or more importantly any pregnant women, so I have been working from home this week. I still feel full of a cold, it doesn't seem to be wanting to shift, but hopefully it will soon!
Bye for now x
Hope you are all well, and no one is suffering to badly with anything!
I have just had a short (ish) stint in hospital (5 days)
I'd been having some issues with going to the loo; tried everything but the situation just got worse. I started to feel really very sick all the time and knew I needed some help when I started to get a fever. I thought it'd be a case of a couple of days laxatives and I'd be cool! I was wrong!
I went down to the hospital and I was admitted straight away, the usual abdo x-rays, bloods and lots of issues cannulating and getting blood (still waiting on the hickman line) my blood pressure was low and heat rate was at 140BPM as was in quite a bit of pain, whole colon was spasming like no ones business and I had pain higher up. I was being pretty sick by this stage too.
The next thing I had a consultant down who said I needed to be catheterised and the old NG tube down immediately and lots of fluids as I was dehydrated and I'd need 2 different strong IV antibiotics.
It came back that I had a bowel infection from a crohn's exacerbation and my bowel just stopped working for awhile . Thankfully, a couple of days and it kicked back into action (with some laxatives) and I started to feel a bit more human! The doctors were pretty worried at some points with the severity of the tachycardia but I came out of it at least!!
Whilst I was in, I started getting the sores around my mouth and a real sore throat (which I put down to the NG tube, yuk!!!0 and a rash on my hands and feet.. I asked the doctor if he thought it was a reaction to the IV antibiotics (although I have had both of them before with no issues) and he thought no, it was probably a heat rash as I was quite warm. I was so glad to get home! I had to log on to work from home the next day; I hate letting them down! :(
The next day I felt completely snotty and coldy.. Rash was worse, so was sores around my mouth! I thought I'd ring my GP about getting something for my mouth as was worried about it getting infected with my lower immune system as it was very painful! I went across and they thought I had picked up hand, foot and mouth virus from the hospital!! How much bad luck can a person have??! lol I got steroid creams and antibiotic cream from my mouth (was already on 2 oral antibiotics) and told I was probably contagious, but people with a normal immune system would fight it off easily. I still didn't want to risk going into the office in case there were people with lowered systems, like me.. Or more importantly any pregnant women, so I have been working from home this week. I still feel full of a cold, it doesn't seem to be wanting to shift, but hopefully it will soon!
Bye for now x
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