Symptoms update: The bowel story

Here's a summary of my bowel story - not so much of an update, but more of a recap.

For a few months prior to my first visit to the National hospital in London (2014) I'd been experiencing some bowel urgency issues - basically not being able to get to the toilet quickly enough. This had been happening about once a month, and had been a symptom which had been getting more often. I'd been devising various coping mechanisms - basically carrying extra pants around with me (generally, as well as the "plus one" rule on packing for trips away). Unlike my bladder problems I'd not been experiencing bowel frequency issues. I mentioned this to my GP, and then again at the National.

Another notable feature of my bowel habits is the "two part poo" - where I have a poo as normal, but after this has come out I know that there is more to come out, but I also know that the sphincter has closed and it will be some time before "part two" is going to make an appearance. So, rather than sitting on the toilet and waiting/forcing the rest out I get on with life, knowing I'll be back in a little while. Back at that time the "little while" might be half an hour or so.

I've mentioned various bits of this previously:
First Nov 2013: http://hspjourney.blogspot.co.uk/2013/11/symptoms-update-illness-tiredness.html
Second Jan 2014: http://hspjourney.blogspot.co.uk/2014/01/a-trip-to-doctor.html

Following the trip to the National I had a referral to the "colorectal" team, which I've also previously described: http://hspjourney.blogspot.co.uk/2014/11/a-trip-to-doctor.html.

I have noticed that since taking my bladder medication the bowel issues are pretty much entirely under control, as noted here: http://hspjourney.blogspot.co.uk/2015/02/bladder-medication-update.html

However, that is not the full story....

At one of the clinics I went to they did an anorectal physiology test. This was way back in 2015, and I'm not entirely sure why I've not blogged about this before. The test measures how well your anal sphincter is functioning, and they do this by measuring the pressure inside the bowel, and after that they inflate a balloon in the rectum and ask you to hold on for as long as possible!

The pressure tests were all good for me. The internal sphincter was well above their ball-park indicator, which is a good sign as I am less likely to develop some problems in the future. There were also no worries on the external sphincter.

However, the sphincter didnt relax as easily when I tried to squeeze, and this was described to me as being a bit like trying to get toothpaste out of a tube but with the lid still on - i.e. no matter how hard you squeeze, nothing is going to come out.

The balloon test (known as a balloon expulsion test) was interesting. Essentially the balloon acts like a stool, and the body should then feel the need to go! My sphincter took longer to sense the balloons presence than average - usually this is done within about a minute, but it took about 2 minutes for me.

The advice I was given was to bring my knees up whilst having a poo. I had a follow-up appointment after this, but as the problem had more-or-less gone away we didnt take things any further. Essentially, if things do start to get worse I have a direct route back.

On reflection I think that I have noticed both of the effects mentioned in the tests - Sometimes I know I need a poo, but I can sit down and nothing will come out. The delay in sensing that a poo is there would appear to me to be the urgency issue explained - i.e. the pressure continues to build up, and I only get 'action' when the pressure is so high that I dont have enough time to get to the toilet and the sphincter is going to operate itself.

In the intervening five years (since I've been taking the bladder medication) the issue has generally gone away. There is still the odd time that I cant get to the toilet quickly enough, but this might be one or twice a year rather than roughly every month. The two part poo is still a regular feature - I think that the gap between the two parts is getting longer, and the half an hour I noted back at that time might now be a delay through to the next day sometimes.

Re-reading my notes from the time I also spot that they recommended that I try to regularise my toilet trips so that I can get into a regular routine. This does happen some of the time, but it is more by luck than design. Perhaps another task to put into my daily routine. 

HSP on YouTube

So, this post is a cross between my blogging life, which you know about from previous posts, and my HSP Support Group hat, which I have mentioned previously here.

A while ago I had found a couple of videos from people with HSP on YouTube. I had bookmarked them with a view to writing a blog post about them one day. Those videos are still relevant, and you can read more about them further down the post!

However, coronavirus came to town, which meant that the Support Group was not able to hold its AGM face-to-face this year. Fortunately we were able to hold it electronically, which we did using Zoom - this was a great success - the digital AGM ranking highly in our all-time number of attendees list. My previous blog post was my usual summary of AGM post - and you can read that here: https://hspjourney.blogspot.com/2020/07/uk-hsp-support-group-agm.html

But, the story doesn't finish there, we had a quick discussion and decided to make a YouTube channel for the group, so in a few clicks I move from being someone who aspires to make a blog post about HSP content on YouTube to actually being one of those people making such content! (note - I'm using this phrase in the loosest possible sense - the AGM is a team effort). As I write the only video is the AGM recording, but we will add more videos as our digital journey develops. For those who wish to jump straight to the channel, go here: https://www.youtube.com/channel/UCkxTfcI4tKYNMYsgzVumpWA

The description of the AGM includes a few time pointers - the full list is here:

03:27 - Chair report

05:05 - Coronavirus and meeting changes

06:43 - Meetings and conferences attended

07:29 - Our new website (feel free to play!)

08:13 - Honorary members

09:05 - The David Pearce bequest

10:53 - Award presentations

12:31 - Ambassador

15:30 - Funding of research

16:10 - Help that the group needs (here!)

17:30 - Secretary report

19:02 - Membership secretary report

22:30 - Treasurer report

28:00 - Voting on reports

29:53 - Trustee elections

32:32 - Any other business

33:40 - The 2021 AGM

34:23 - Upcoming HSP presentations

So - if you wish to go and watch - go here: https://www.youtube.com/watch?v=J1yBY0wPm1o& - and dont forget to like and subscribe!!!

So, back to my original idea about writing a blog post on YouTube content - I had thought that I'm unlikely to be the only person seeking out information on YouTube about HSP, and a couple of people I know with HSP have made or been in such videos. I lost a few hours searching, clicking and watching HSP videos on YouTube, and I have started some playlists on the channel so that others searching for HSP can find them. At the moment there are three playlists, but as new videos come to light I see this changing. The first three are:

Those with HSP: https://www.youtube.com/playlist?list=PLM0_-wMVB0ncw1aG3ONLtJPL9nF_TzrKg - Various personal stories about HSP

HSP information: https://www.youtube.com/playlist?list=PLM0_-wMVB0ndjbS0gk7sHsn-Celr2LjL1 - videos which present more medical aspects of HSP or research into HSP

Potato Pants festival: https://www.youtube.com/playlist?list=PLM0_-wMVB0ncCvH6daKN2v9oMgw7Kxw5m - This festival is run in Dorset by Ian Bennett to both have a good time and to raise awareness about HSP and also raise a little money for the group. The live festival has had to take a coronavirus pause this year, so the videos of previous years seemed like a good reminder.

Finally, the channel also contains links to a load of other relevant channels, so if you're using YouTube to look for further information, then this might be a good place to start: https://www.youtube.com/channel/UCkxTfcI4tKYNMYsgzVumpWA/channels

If you can recommend any other videos or channels with an HSP connection, please drop me a line - the playlist and channels is very much a work in progress.

Enjoy your viewing!!

 

UK HSP Support Group AGM

A couple of weeks ago the UK HSP Support Group held its AGM. Due to the effects of Coronavirus it was held on-line via Zoom. Group members and regular readers will note that the AGM usually has the official business first, followed by a series of presentations. The on-line AGM covered the official business part of the AGM only, with the presentations advertised for later in the summer.

Of course, I write this post wearing my chair of the group hat, and the us/we references are about the Support Group. You can read a summary of activities below, but if you'd prefer to watch a recording of the AGM, read my latest blog post with links and more details: https://hspjourney.blogspot.com/2020/07/hsp-on-youtube.html. Written summary:

Activities as usual:

• Welcoming new members to the group
• Meetings
• Member and researcher grants
• Newsletters (all on website)
• Attendance at HSP and Rare Disease meetings (January 2020 Newslink covers most)
• Asking for people to help (new page on website)

New Activities:

• Digital Meetings - needed to do this due to Coronavirus
• David Pearce bequest - details of the bequest and how we are using it - including two new awards
• New committee structure has started up
• Searching out new honorary members - healthcare professionals who work with HSP patients
• The new group website has gone live
• Existing group profile on FaceBook, and new ones on Twitter and LinkedIn 

Thank You!

It was important to recognise and thank all those who had contributed to the group during the year:

• Members - Without members we wouldn’t be here
• Volunteers - Their valuable time makes this group work
• Fundraisers - Activities raise funds and awareness - Amazing!
• Researchers - Their work gives us hope

Award for fundraising

This year, the award is given to Peter Bateman who over the period 2011 to 2019 raised over £10,000 for the group. He did this by providing HSP Group customised key rings and pens together with collecting boxes at hotels and golf clubs etc. near where he lived, his regular replenishment and cash collection no doubt helped in delivering this fantastic amount for us.

Award for raising awareness of HSP

This award is given to Lily Rice who has used her situation to great advantage in becoming the first European person to complete a wheelchair backflip. She has become a mentor to other young people who are coming to terms with life in a wheelchair and uses these opportunities to raise understanding and awareness of the condition and of the Group. Lily was on BBC1 a couple of weeks ago, and I encourage you to watch her episode of Our Lives, Defying Gravity on BBC iPlayer.

Ambassador - Amber Meikle-Janney. 

Last year at the AGM we made Amber our first ambassador for the group, and Amber was really pleased about this. Amber works with the charity Back-up, which helps people with spinal cord injury. Amber teaches wheelchair skills, and when working for the charity has an honorary spinal cord injury herself. These courses are great because they help people do more with their wheelchairs, and it helps people to see them as a benefit more than a burden. 

Research Grants

We received three grant applications recently and have used our newly developed assessment procedure

to successfully evaluate them. We have been able to provide funding for all 3 applications received:

• University of Exeter – PhD student working on biomarkers, aiming to develop a predictive HSP blood test, applicable to all types of HSP.
• University of Sheffield – PhD student working on biomarkers and gait analysis for SPG7, aiming to develop predictive measures.
• Institute of Molecular Biology and Pathology, Rome – Work on predictive biomarkers for SPG4

Elections

Two Trustees, Adam Lawrence and John Mason were at the end of their present term and are standing for re-election. Mitesh Patel is standing for election for the first time.

• Adam Lawrence was re-elected by a unanimous vote.
• John Mason was re-elected by a unanimous vote.
• Mitesh Patel was elected by a unanimous vote.

Presentations

On-line presentations will be given as follows by speakers we had arranged for the AGM:

• Saturday 25 July - Prof Andrew Crosby and Dr Emma Baple are going to be talking about their work on cholesterol processing which was published in the neurology journal, Brain last year. They will also talk about their plans for the future.
• Saturday 1st August - Dr Channa Hewamadduma is going to talk about the work that him and his team undertake in Sheffield, looking at some of the insights and learning they have gained from their approaches to working with a large cohort of HSP patients. 
• Tuesday 11th August - Dr Gita Ramdharry will be talking about the Physical Activities in Rare Conditions. She will also cover more general aspects of rehabilitation and the importance of physical activity for those of us with HSP.