Me & My Crohns

I thought it was just a sign of getting older; just something that happens later on in someone’s life. Then I remembered that I’m still in my 20’s. My wife always has to remind me about things. “Remember you were going to do that”, “your mum has already told you this”; “do I have to repeat myself again?” This has become an all too common occurrence. My memory is not what it once was ~ I think.

I have also become very rude and ignorant. This isn’t on purpose. Someone will talk to me and I will only be able to listen to them for 30 seconds. Any longer than that and I began to glaze over. This isn’t through boredom. I enjoy listening to people and respect what they have to say but my concentration levels have disappeared. I just can’t physically concentrate for long periods of time. I wasn’t sure I could link this to Crohn’s disease. How could a dodgy bowel affect how my brain works?

At my last consultation I mentioned these symptoms to my consultant. He asked some further questions then nodded his head and said it could be my B12 levels. He sent me off, with my little blood form, to the phlebotomist (Blood takers – not vampires). The last thing you need to hear when entering the phlebotomist’s waiting room is “Help, I need help”. A rather large man had completely passed out whilst having his blood taken. Luckily she managed to wedge him in the chair whilst she called for help. In this situation, I don’t think I’m supposed to help. So I didn’t. I sat down quietly and pretended to be oblivious to what was going on. Luckily for everyone, 4 nurses turned up and pulled curtains around the poor fella whilst they tried to wake him up. I was soon taken into a different room as I didn’t fancy having blood taken whilst they tried to bring an unconscious man back into reality.

My consultant had told me that they don’t check B12 levels unless requested, due to how much it can cost. This shocked me as this problem seems pretty common for people who have had surgery on the small bowel. Over the years quite a few people had told me to keep an eye on my B12 levels as they had suffered problems after their Ops.

B12 is very important for the brain and helps with memory and concentration as well as a few other vital roles. The wonderful world of Google tells us that B12 “plays a key role in the normal functioning of the brain and nervous system, and for the formation of blood.” If this is my problem, it answers a lot of questions I have with regards to my sanity.

My blood results came back within a week and showed a very low level of B12 in my system. This is not good and requires urgent attention. Obviously you cannot just take a B12 pill as you would fail to absorb it. If you could absorb B12 you couldn’t be in this situation. You have to have injections for the rest of your life. On the plus side, I do now know there is a problem and it is something that can be dealt with. I’m kind of pinning all my hopes on these injections, but that is what us Crohnies do. We pin our hopes on medicine and IBD experts to help us through some rough times.

I’ve not started the course of treatment yet as I’m waiting for my GP to sort them out. It is not done as an out-patient at the hospital; you are referred back to your GP who will monitor you.
So hopefully the injections will sort me out. I miss my memory, I think?!

Keep well

Ben x

A little while ago I wrote a blog about how people comment on how well you look, even when you are feeling really poorly. The other day someone uttered those usually annoying words in my direction; “you look well”, however, this time it was true. They were uttered by another sufferer who knows not to use those words lightly.

I’ve put weight on, pretty much lost the bags from under my eyes and finally got some colour back to my face. I am feeling really good. The bathroom department is almost normal, or at least what I think normal should be. It’s a scary thought being normal. It’s left me with a sense of freedom I’ve not felt for years. As you may have noticed, my blog is not as regular as it used to be. I seemed to have reached point where I can push the Crohn’s Disease to the back of my mind.

My consultant thought it would be useful to have a good look inside and check everything was ok. My bloods were not showing any activity but these cannot always be relied on. A visual of my bowel would give hard evidence of all being well.

I’ve had a colonoscopy a few times in the past. This is where they insert a long camera, about the same thickness as your thumb, into
the rectum. It scopes further round than an endoscopy so it is recommended to have medication to help you relax. Air is blown in through the end of the camera, to expand the bowel and give a clear view.  This can cause a little discomfort and is occasionally painful. When this happens, you will be thankful for the drugs and how they help you forget where you are and what is happening. You remain conscious during the procedure and can view the monitor and see all that is happening. I find this very interesting and love asking questions. I don’t shut up and by the end of the procedure I know exactly what has been seen through the scope, the surgeon’s life story and what the nurse has been up to lately! The biggest problem with this is after the procedure, the drugs have made you forget most of what happened.

During the procedure the surgeon didn’t notice anything of significance. He said it all looked good and had also seen some of the area
that was operated on last year. It was odd seeing the staples that remain in there. Using special pincers on the end of the camera, some biopsies were taken from certain areas of the bowel. These areas were picked either because they are known flare up points in me or because they were a slightly different shade of red.  He told me there was no sign of the Disease but biopsies are taken as standard procedure, just to be sure.

I guess while I’m talking about endoscopes, I really should mention the preparation. This, for me, is the most unpleasant point. I’m so
used to doctors being behind me with rubber gloves on, that I don’t really mind the actually procedure (plus you get some really nice drugs, as I’ve already mentioned!). The preparation consists of 2 sachets of liquid. These are to be taken the evening before and the morning of your procedure. It’s a laxative that ensures the bowel is completely clear. I’m not sure of how it actually works, but it seems to take all the liquid your body and direct it round the digestive system and out the rear. It is very strong stuff and works pretty quickly. You are advised to be within a short run of a toilet. I would ensure you have some entertainment in the bathroom as you’ll be in there a lot.

A couple of weeks after the procedure I was invited back to my consultant. First he asked how I was feeling. To this I responded with the
truth. I was actually feeling really good. He said the visuals on my scope were good and my bloods are all looking stable, however, the biopsies showed some inflammation. So my Crohn’s is still active; I’m not in remission. This wasn’t the news I was expecting. My Mercaptopurine was reduced down to reflect the fact that I’m feeling well. I had hoped we could stop it completely. I must carry on with it though as the Disease is still present. I really thought after seeing a lovely bowel on the scope and some normality in the bowel movements department that I was in some kind of remission. Once again I have been thwarted by my nemesis: Mr Crohn’s.

On the plus side, I don’t need to return to the IBD clinic for 12 weeks. This is the longest amount of time between consultations in
years. So my consultant must be pretty confident that I’m in control.

My next battle will be my mind. My head has been very cloudy recently, with some major memory problems and concentration problems. I had a blood test to see if it is because of low B12 levels. The Op I had last year chopped out a small bit that dealt with absorbing B12. I get my results tomorrow…….. I kind of hope it is B12 as then at least there is a way of dealing with it and hopefully my mind will come back to me. I miss him

Anyway, that is for another blog.

If you’re having a scope, it really is nothing to get yourself worked up about. The doctors and nurses do it all day, every day, so you’ve got nothing to be shy about. Just chat to the nurse and hold his or her hand. It’s a real comfort.

Keep well

Ben x

Every 6 months I have to visit my consultant as an out-patient to assess my current Crohn’s activity. For everyone who is reading
this that suffers from the condition or maybe another Chronic illness, you will no doubt do something similar.

The consultant keeps a regular check on you whilst you are still in need of care. The care can be a simple review of medicine or it can be
a deep discussion into future possibilities of controlling your disease.

I have been under the care of my current consultant for around 5 years. He has been there through thick and thin. I would highly
recommend him and his clinic. They provide a fantastic service which helps more people than it can unfortunately cope with. Quite often the clinics are so booked up that they have to double book patients in the hope that some patients may not require as long with the consultant, or do not turn up.

In the early part of this year my consultant had to take some time out of work. It was all sudden and left the IBD clinic in a difficult
position. All of the out-patient’s appointments were cancelled and everything was shuffled around to try and get it back up and running as quickly as possible.

I know the consultant was away for quite some time but the clinic did start moving again with stand in doctors. I waited for quite some
time to get a letter telling me of my rescheduled appointment. I waited so long in fact that I needed to call the clinic to order more medication and to organise a blood test.

I had assumed that because my Disease had been pretty stable, I had been put to the bottom of the waiting list. I thought the back
log was so big that it would take a while for them to catch up.

On calling my IBD nurse, I was informed that I had been discharged as I had missed my latest appointment. The discharging of patients
is standard procedure and it was up to me to return to my GP to get referred back to my Gastro clinic.

This seemed crazy to me; not only had I never missed an appointment in the history of my Disease, they never bothered to inform me that I had missed an appointment. I could have been left waiting and waiting. I felt extremely upset and frustrated at the lack of contact. I understand that it was all automated and my name was struck off by a computer, but this didn’t make me feel any better. I felt as though I had been left to struggle along on my own. What was I to do about my medication? My GP cannot prescribe the drugs I
currently take. What was I to do about my monthly blood test that was due to ensure the medication isn’t causing me problems? No disrespect to any GP’s but there is no way they could have helped me at this point.

So for the first time in my life I wrote a letter of complaint. I have always been very understanding, even when I have had other
problems with my care in hospital. I could rationalise them and they weren’t major problems in the grand scheme of things. This time hit me hard. A letter to relinquish my frustration was the only way.

Within 2 weeks of sending the letter I had had a few of letters in response. I was informed that my letter had been read and another
letter to say that the matter was being dealt with.

Pretty soon after I received a call from the hospital apologising for how I had been treated and they hoped that I would be satisfied being
reinstated into the care of my consultant.

I accepted the apology and was extremely happy to hear that my next appointment was booked in for the following week. Things moved pretty quickly from there and now seems to be back on track.

I don’t like complaining but in this instance I feel I was justified and needed to get things back under control. My consultant knew all
about the problem I had faced and was happy to know that everything had been sorted.

So do not feel afraid to make your thoughts heard. If you are not happy, you must tell someone. If people don’t know that there is a
problem, they cannot fix it.

Crohn’s update: At the minute things seem really good. I think I’m pretty much back to normal (or as normal we can ever be). No pains,
no discomfort and a pretty regular, stable movement.

I will try not to leave blog updates so long. But being well meant I found it difficult to sit down and write about my Crohn’s. I just
wanted to forget…….

Keep well

Ben x