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Posts Tagged ‘Gastritis’

I haven’t posted a real update for a while, so thought I’d do that before I start on a few topics that I’d like to discuss over the coming weeks.

I think it’s safe to say that I am responding well to the Infliximab infusions, as I am relatively pain free these days and all joints are mobile, with little or no swelling. I am still taking 60mg of Morphine twice a day (down from 140mg), but am working with my GP to reduce this. We’ve come to a bit of a standstill at the moment because I do get some pain from my reoccurring Gastritis, but once this is under control with the stronger stomach medication, I aim to become Morphine-free and hopefully will have no underlying pain.

The Gastritis is probably my main problem right now. I had my first episode of this earlier in the year, just before my major flare at the end of January, and it is thought that the Gastritis contributed to this, since the stomach inflammation meant that I was not absorbing my Still’s medication adequately. I now take Esomeprazole and Motilium three times a day and also avoid acidic food and drink, but still it niggles away. A friend, with Still’s and similar gastric trouble, has suggested that it could be related to the IV biologics that we take and so I’m going to look into this at some point. If you have experienced anything similar whilst on any of the IV biologics, please comment – it would be interesting to see if this is the case.

The Infliximab infusions themselves are going well, although I did suffer a bit towards the end of the eight week interval. I noticed that rash, temperatures and some joint pain returned at about five-six weeks post-infusion. As a result, my Rheumatologist has prescribed it every six weeks instead. I haven’t experienced any major side effects from the drug apart from getting a very sore, ulcerated mouth a couple of weeks later. I do seem to be more prone to infection in general though, something I never really noticed with any of the other medications, despite their immuno-suppressant action. I currently have the first cold and throat infection I’ve had for years, so I’m being extra careful.

As I have briefly mentioned in a previous post, I am having some problems with my finger and hand joints being very stiff and painful, especially first thing in the morning. This is unusual in itself, since any previous hand involvement has always been during times of full-blown flare. My only thought is that six months on crutches has put extra pressure on those particular joints, so hopefully it will only be temporary… especially now that I am off crutches altogether! Yep, I felt that they were holding me back on our recent trip to Paris and so threw them into the River Seine (not literally). I need a bit of support from people at times and have the odd spell of vertigo, where my brain seems to forget how to balance without sticks, but I am finally back on my feet and feel like I can only get stronger from here.

I have also managed to get down to 5mg of Prednisolone, the lowest I’ve been since about 2007 if I remember rightly. I would love to get off the stuff completely of course, but for now I am happy with this low maintenance dose and would prefer to get rid of the Morphine. I don’t want to be doing too much too soon, in case I put all this success into¬†jeopardy, plus I have to save some goals for the future right? ūüėČ

All in all, things seem to be on the up (touch wood), but don’t worry – I’ll still find plenty to post about!

Here’s to Infliximab and the future,

Cin cin

L

Ps I have updated the ‘My Story’ page and also added some new Articles to the Articles section.

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I can see my toes again!

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We made some progress today, in that I was able to sit up a bit more and eventually moved into a¬†special reclining chair that one of the lovely male nurses managed to wrangle for me. This proved to be a fantastic help¬†over my remaining days in hospital; it was remote controlled, raising and lowering as well as reclining, and so I was able to sit/stand without bearing too much weight through my hips. It was also a lot more comfortable than being stuck in the bed all day, with my legs stuck out¬†in front of me; it’s surprising what relief a change in position can bring. Now that we knew there was no damage to my spine, I was able to switch between the two and make further steps towards getting myself more mobile – things were looking¬†up.

And then came the ward rounds.

My Rheumatologist’s Registrar came to see me with a few other curious doctors. He told me that there was no infection present in the fluid they had taken from my hip on Friday and so it was looking like the Synovitis and Joint Effusion was down to an exacerbated Still’s flare.¬† He said he believed that the Still’s was getting worse because the Tocilizumab wasn’t working, despite the improvements to my bloodwork. He then went on to say that that the¬†problem was, I had tried all the different mechanisms of drugs by this point: Enbrel, the anti-tnf, Anakinra the il-1 receptor antagonist, Abatacept the T-Cell inhibitor and Tocilizumab the il-6 receptor¬†inhibitor.

As a result, he said I had run out of options and that my main hope was for them to look into future clinical trials that may include Still’s Disease patients. He mentioned the possibility of returning to anti-tnf therapy but felt that there was only a limited chance that I would respond after forming antibodies to Enbrel previously.¬† I was lost for words and he went away leaving me in a lot of doubt and feeling quite scared about the future. I have always known that my Still’s Disease was difficult to treat and did not follow the typical pattern; my Rheumatologist and I had often joked about how complicated I was, but we had always had a plan of action, another drug in the pipeline if the current one didn’t prove a success. I had always had faith that we would get on top of things eventually, even if it was a long, hard struggle to get there. Was I wrong to be so positive, naive even?

For the rest of the day I was out of sorts; I became tearful when I needed help from a nurse to go to the toilet, frustrated with my dependence and disability all of a sudden – was this going to become the norm for me? I spent¬†a lot of time talking to my friends and family about it and they reassured me that I needed to see what my Rheumatologist said first; as I said before, he had always kept me optimistic about my future. He came to see me at about 6pm that day; I can’t¬†remember the conversation now but nothing he said made me feel like a lost cause. Instead, he suggested that we persevere with the Cyclosporin a bit longer (with the Tocilizumab), since that had always brought some level of control in the past and I had only been on it for a few weeks at that point – some of which may not even have counted, since it is possible I may not have absorbed any medication while I had chronic Gastritis.

He admitted things were pretty dire and¬†couldn’t offer me any guarentees, but he at least didn’t make me feel like I had completely run out of options.¬† I was able to relax a bit more and focus on the here and now again, taking small steps towards getting back on my feet and home – washing at the sink, using the toilet, getting between the bed and chair on my walker etc.

But I have to admit, the Registrar’s claims have been niggling away at me ever since.

L

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Things on the gastric side were looking up. I got the results back from yesterday’s Endoscopy¬†and they showed that I had Gastritis – significant inflammation of the Oesophageal tract (which also explains the widespread chest pain), Stomach lining and Duodenum; not nice, but better than the ulceration that I had been concerned about.¬† Fortunately, all the IV medications I had been taking since being admitted were helping already – a combination of¬† Anti-Emmetics, (which close the top of the stomach and encourage things to flow in the right direction, as well as helping with nausea), Proton Pump Inhibitors, Antacids and H2 Blockers.

I still had some pain, but was told that it would take time for this to settle down as the inflammation eased. A nutritionist advised me to alter my diet and cut out certain irritant foods for a while; mainly spice and acidic foods such as tomatoes, peppers,¬†onions, cheese,¬†fruits and juices – all of my favourite things basically. Instead I was to eat lots of potatoes, white meat and fish, pasta, rice and vegetables, also things I already eat a lot of so no problem there. Hopefully, these¬†limitations¬†won’t be forever though as I’m a big foodie and like variety! Their guidelines said a strict diet for 4 – 6 weeks, after which I can start trying myself out with things a little bit at a time to see how I go… well except for spicy food, that’s going to take a lot longer and I love my spicy food ūüė¶

They also stopped my Naproxen and Cyclosporin as they felt that these two drugs in particular had contributed to the Gastritis. I should mention that they did liase with my Rheumatology team throughout my stay and that they felt it was more likely to be the Methotrexate that I stopped recently. But, I was under the care of Southport Hospital and respected their wishes for the time being.

Things didn’t stop here though and another problem soon arose. As time progressed,¬†I started to notice that the dreaded temperatures and sweats were increasing, plus I was starting to develop a very visible Still’s rash all over my body. I tried to show it to the nurses and doctor, to explain the significance of it and what usually followed, but I had been admitted with gastric problems and they were their only concern. It turns out that the two were connected though and that I potentially hadn’t been absorbing my oral medication for a month or so, leading to the major flare that follows.

As today went on, I became less mobile and able. I felt the pain¬†and¬†stiffness sneak into my¬†joints; first making it difficult to reach for and hold¬†things; next¬†I began to struggle to sit and stand without help and¬†then¬†even¬†hobbling the short distance to the toilet became a huge effort. By evening I was in a pretty bad¬†way. A nurse finally listened to me and gave me the IV morphine I’d been prescribed to cover all of my pain whilst off oral meds; I wasn’t expecting any visitors and so fell asleep for a few hours – big mistake!

I woke up from my nap with all joints a-throbbing and found it impossible to even lift my head up, never mind sit up fully. This happens to me quite often, especially if I lie flat on my back for a time¬†– I don’t know if it is¬†simply part of the Still’s Disease or some throwback from the Dermatomyositis (a form of muscular dystrophy)¬†I was diagnosed with at 14, but it has always been¬†a big issue for me.¬† I buzzed the nurses to explain and was told that myself and another lady were being moved to another ward shortly and that they would sort me out there. Ironically, we were going to the ‘upwardly mobile’ ward, just at a time when¬†I felt anything but mobile.

The problem about switching wards is that you have to make the staff aware of your problems all¬†over again. It was obvious that they weren’t expecting a patient that had to be transported on a bed and pat-slided (a word I came to dread over the next week);¬†this was a ward you were sent to¬† recover and prepare to be discharged. The two female nurses were lovely to me as I explained my difficulties and promised to find me pain relief and assistance; however, it turned out that they weren’t fully responsible for my care. It would be a male nurse called Conrad that would make all the decisions.

The first decision he made was to keep me rolled onto my left side, with pillows propped along my back so that I couldn’t roll flat. This was because he’d read in my notes that I was feeling nauseous and didn’t want me to choke if I was sick while lying on my back. Yes, I can see the line of thinking here,¬†but I was no longer vomiting or even feeling sickly. The next decision he made was that I looked ‘too young’ to need any form of pain relief stronger than Paracetamol; I heard him say so at the nurses’ desk, which was a stone’s throw from my bed. When I told him I’d been on longterm pain medication for 16 years and that I knew Paracetamol wouldn’t help, he told me that it was ‘stronger than everyone thought’ and to ‘trust me, it’ll do the trick’.

It didn’t.

An hour or so later, I was in tears with the pain but he¬†would not budge on the matter, even though I had actually¬†been prescribed IV morphine and Oramorph by a doctor. I remember thinking it strange that my main pain seemed to be coming from my ‘good’ hip, but then I had been lying on it for over twelve hours by this point. I had no idea then¬†just how bad things would get.

The night went on and the pain grew worse, but I must have managed to fall asleep at some point because I woke at the start of a nightmare the next morning.

L

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Things were more settled today; the IV meds and being nil my mouth had stopped the vomiting and the morphine was helping with the pain. I got the go ahead to have an Endoscopy / Gastroscopy procedure later on this afternoon. This is where they put a fibre-optic camera down your throat to look at your Oesophageal tract, Stomach and the Duodenum, which is the upper part of your intestine.

I’d had this procedure done at the age of 19, during¬†an episode of vomiting fresh blood; however, that time I was given gas and was out for the count. This time I was just offered a sedative, which they said would leave me pretty much unaware of what was happening (during and afterwards), and make the procedure easier for them, so I took them up on it and signed my consent forms.

I went down to the Endoscopy department at around 2pm. The staff were lovely and very good at making me feel¬†comfortable and at ease; they explained the whole procedure to me beforehand, as I wouldn’t get chance to ask questions halfway through, obviously! I was a little bit¬†nervous about what to expect, but I have learnt over the years that panicking helps nobody – if you panic, your heart rate increases and you feel more agitated and out of control, your body tenses up and that makes it much more difficult for the medics to get things done quickly and efficiently.¬†I always try and focus on the now, not the ‘what-ifs’, remember to breathe evenly and relax my body as if going to sleep (maybe this is why I am so good at sleeping anywhere!).

They explained to me that they would first numb the back of my throat with an anaesthetic spray that would help prevent me gagging – that part was quick and easy. Next, I was rolled on to my left side and I mentioned my joint problems so that they wouldn’t try and move me too awkwardly if I was out for the count at some point. They then gave me a very attractive gum shield and mouthpiece¬†to protect my teeth from the camera itself; doing so before you are sedated means you get chance to become comfortable breathing with it in place, because it does feel different.

Next came the sedation – a quick squirt into the cannula already fitted in my arm. The first lot seemed to have no effect and so they gave me a second dose a few minutes later. This didn’t seem to work either, but they assured me it would probably just take time to kick in and I would feel the benefits throughout. Unfortunately (?) I seem to be immune to sedation – ¬†in fact, all it did is make me feel more awake – but I’d like to point out that this made little difference to the procedure itself, in my opinion. It really wasn’t that bad because I was relaxed and remembering to breathe, but I understand why people may find it uncomfortable if they are anxious.

The worst bit is when the camera and tubing initially goes down the throat but even that wasn’t terrible – they blow air down at the same time so you make a bit of a gurgling sound (which I had to try not to laugh at) and you find it a little bit different to breathe and I guess that’s the time you’re most likely to panic, but before you know it it’s done.¬† Once it was down, I was quite comfortable and was able to breathe as normal and look at the screen to see my insides! The camera¬†went all the way down into my duodenum and even took biopsies along the way, but I didn’t feel any of it.

It took about twenty minutes in all and I was aware of what was going on the whole time; the doctor explaining things as he went along. Even I could see the inflammation and a little pouch called a Hiatus Hernia¬† at some point along the way, although he assured me that particular problem wasn’t what was currently affecting me. Once they’d got what they needed, there was a bit more gurgling and discomfort as they pulled the camera back out and that was it – all done! It was a very simple procedure and I wouldn’t have any reservations if I needed one again, even without sedation.¬† They had warned me I may feel some discomfort afterwards, but the most I felt was a bit of a raw throat, which quickly disappeared.

Once the Endoscopy was over, I was allowed fluids again and (yipee!) was able to keep them all down. I wasn’t allowed food until the indepth¬†results came back the next day though.¬†Until then, we just kept up with the regime of IV medication¬†with the addition of something to treat the inflammation, which they were now calling Gastritis. So we had a tentative diagnosis and a plan of action by the end of the day; can’t grumble about that!

L

Edit: I have since had another Endoscopy, this time without any sedation. It was bearable but a little more uncomfortable, which has made me realise that I probably did get some effects from the sedation,¬† just not what I was expecting. I was still aware of what was going on; the main difference is that with sedation I don’t recall feeling the camera doing its stuff in my stomach, whereas when I had the procedure without, I could feel what was happening. This was only mildly uncomfortable, but if you are at all anxious may be more than you want to feel.

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Note: this marks the start of my backdated posts, covering the period that I was hospitalised.

I’d last been posting about the gastric¬†issues I was experiencing. Things went rapidly downhill on the Saturday and I was having constant,¬†excruciating pain in my stomach and chest, alongside vomiting after only sips of water; I also¬†experienced some rectal bleeding and started to grow more and more¬†concerned.¬†This continued all through the night, until we could get hold of the out of hours doctor, who told me to get to our local hospital straight away.

The doctor there examined my stomach, which was extremely tender to touch, and admitted me to the Emergency Assessment Unit straight away. The main concern was obviously the possibility of a bleeding ulcer (I suffered something similar ten years ago), but I was also seriously dehydrated and had been unable to keep any of my medication down for over 48 hours. I was examined again a short while later and had the necessary blood tests, xrays, scans, etc as well as a rather interesting examination by a doctor that looked about twelve, (Dr Liam) which (to put it nicely) found no evidence of haemorrhoids and meant the bleeding was even more of a worry.

Other possible diagnoses at this point were Gastritis, Pancreatits and Duodenal Ulcer.¬† Treatment-wise, I was given Morphine, Methylpred, Fluids, Anti-Emmetics and Stomach Protectors through an IV, while the rest of my medications were put on hold. They felt that these were to blame for the problems, but covered their abscence with extra IV steroids.¬†I did a silly thing at one point and managed to pull the cannula out of my ‘one good vein’, meaning that they had to insert a new one with a fancy probe that finds deeper veins – it worked and I’m glad to have learned that it is an option!

With the pain under control, I was much more settled and so they moved me onto a side ward with five other women, who became good friends over the next few days.¬† I did have some reservations though, since this was the same ward that I’d¬†had¬†such a bad experience on in August; but the Matron recognised me¬†and promised I would get the right care this time round. For the most part she was right and I had a much better experience at this ‘dreaded hospital’, until I changed wards.

So, I was nil by mouth and had a few investigations lined up once the weekend was over, but I was comfortable for the first time in weeks and even managed to get some sleep.

I had no idea of how things would turn out.

L

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