It's been awhile!

Hi there!

I hope everyone had a great Christmas and New Year!

Sorry, it;s been quite awhile since I did an update, I've been so busy between the kids, work, crohns, christmas and life in general!

I had a fairly stable couple of months, feeling OK and not so bad at all. NO HOSPITAL STAYS! Which is great as I was in and out so much in the months before. I was meant to have a "double ender" scope under GA in December but due to it being peak at work, they grumbled about me having the time off so as I was feeling well I decided it wouldn't hurt to put it off until this month.

The last two weeks I haven't been feeling too good, but definitely not as bad as I have done in the past! I had some bloods taken from my port today and will get the results early next week. My main gripe at the moment is not the crohns in the small bowel (I don't think) but the transit/motility problem in the large bowel. It's causing me horrific problems with severe constipation/overflow diahrea which it uncontrollable if it starts and eventually makes me really sick too, which is when I have to go into the hospital. They doctors think these are separate issues which if you get together can make life really awkward, not sure if it's crohns related. This is a problem that is going to have to be looked into separately eventually after my scopes.

Bye for now.

Port-a-cath day 2

Hi guys!

Thought I would give a little update.. I am now 2 days post op from my port insertion . Still pretty sore and bruised. I changed the dressing last night and was pretty shocked by the size of the cut (see below) so not surprised it's sore!

I decided that I wasn't feeling up to work so let them know I'll be back on Monday. I feel quite bad as I did say I'd be back the day after! (doctors said no to that straight away!) I know I shouldn't worry about work, but I always do. I couldn't afford to lose my job.

I was awoken by my Rheumatologists secretary calling to say that now the port is in, he's requested my notes to make an appointment to get the ball rolling. I kind of grunted being half asleep! Everytime my husband has moved the last two nights I've been wide awake on the guard in case he moves and hits my chest, so it's been a very disturbed couple of nights.. knackered!! 

Its just as well I didn't go to work, as the senior sister of the Intermediate Car Team called and said she would pop by and drop off my box of supplies for the port and to go through a few things. Great, finally started to not worry about it as she knew what to do!
She came over and she was truly lovely, she had someone shadowing her too. We went through my background/health problems etc and she went through a bit about what they do. She said the port would need flushing with heparin every month if not being used so she will sort out a repeat prescription from my GP for that. They also cleaned and changed my dressing for me :)

My box of "goodies" she brought had a bunch of stuff in, all to keep here. She did get out all of the stuff to access percy port once (pic below) and said to put that in a sandwich box and carry with me as an "emergency" box. There is a lot to remember, but I'm sure it'll become second nature with time.

I will be taught how to access the port myself as apparently paramedics and some hospital nurses/doctors wouldn't feel comfortable doing it, so I need to be able to do it if needs must. They have a service from 8am-9pm so will always try to help between those hours but once I'm trained at least out of hours is covered too.

Below are a couple of pics... First is the cuts (you can't really see the port much here) and also all of the equipment I will need to access my port once

Bye for now!!

T x

Let's welcome Percy!

Hey all!

Sorry it's been awhile since I've posted, I've had a tough few weeks with feeling awful and tired etc.

Yesterday, I finally had my port-a-cath (Percy!) fitted under GA. I got there for 12:30 feeling really nauseous, luckily I wasn't actually sick.. yet! I got admitted onto the day case until, saw the surgeon & got consented consented, saw the anaesthetist and he assured me I'd have 2 strong anti-sickness drugs and another written up for after, then it was a case of waiting.

My surgeon popped out with the port and said they'd not ordered in a thinner one for the operation and they only had this one which would stick out a little further. If I wanted a thinner one I'd have to go back when they had it in.. Which meant me and hubby taking more time off work and me having to wait longer, so I just said use that.. Obviously a bit annoyed as the lack of organisation but oh well!

I went into the theatre and then the circus act of trying to canullate me began. Of course, they had lots of goes and nothing at all! Nothing in the arms, hands or feet to use, all they were doing was causing more bruises and damage. And hey, if an anaethetist can't do it, then there isn't much hope is there?! This was further confirmation that I really did need this doing! In the end, they took the decision to gas me to sleep and then try and get a canulla in whilst I was under. So I was told to take lots of deep breaths and the next thing I was waking up groggy, in alot of pain heaving and being sick, they had got a line into my foot so they gave me more antisickness medication and some pain medicine. Heaving was causing me loads of pain, it was so much sorer than I expected anyway! Then I was told I'd probably be more bruised than most as they had some problems getting it in which is why I was in theatre for 2 hours instead of the usual 1 hour.

After a short while in recovery, I was back on the ward having a drink and managed to stomach a sandwich. I was sent down for a routine chest xray to make sure it was sitting in the right place in the Vena Cava near the heart. As it was after 5, it was the out-of-hours service so was a bit of a pain. Then the hospital systems went down so the doctors couldn't review it, i wasn't allowed home until this had been checked. At this stage hubby and kids were waiting as the nurse had said I'd be ready to go at 7pm (which I would of been had the systems not gone down) it was 8pm before the doctors finally reviewed it and I was allowed home, I was told to call the practice and district nurses first thing to find out information on how to use it, supplies etc and I was sent on my way!

I certainly didn't get a lot of sleep, it was much more painful than I expected. It feels like I was on the losing side in a boxing ring and I'd been punched really hard in the right chest, neck and arm. I had planned to go back to work today, but the doctor said I wasn't allowed to go today, and shouldn't on Friday really (but I must go back tomorrow) Hubby had to stay off to be the responsible adult and watch me, so he helped me wash my hair as can't lift my arms that high yet and my hair was matted with blood at the back where it obviously ran down during surgery.

I called the surgery this morning so that the district nurses gave me a call as the ward had said. They called back, and don't have a clue about port-a-caths, only hickman lines. I explained that this had been my worry, that no one would know how to use it and it'd of been a waste of time! I know I need to be shown and taught to use it so this won't happen and if I get admitted etc I can access it and leave the tube in for nurses to use. They didn't know where to get supplies or anything, I stressed my worry and they said they'd try to find out what to do.
I got a call back saying that an IV nurse they spoke to had 12 people on their lists with ports so she is going to give me a ring at some point today.. Here's to hoping it'll be sorted out! I just want to know how to use it and then I can't get caught out by the "oh I can't use those!" line!!

Well, I am going to go and get some rest, and hopefully a nap considering I've had little sleep! I should imagine I'm going to see lots of bruising come out in the next few days and it'll be sore for a week probably. 

Bye for now..

Pic below is percy and the incision with dissolvable stitches under pressure dressing (Can't take off til tomorrow) and the tiny cut near jugular higher up with a steristrip.

New gastro

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

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

Snooty Secretaries...

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!

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!! 

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