Percutaneous Tibial Nerve Stimulation

That’s quite a title, isn’t it?! Percutaneous tibial nerve stimulation (PTNS) is a treatment for diarrhea-preominant IBS that you’ve probably never heard of, but a lady named Lorraine from the UK has been kind enough to talk to me about her experiences with PTNS. This is what she says…

“I am in my forties and I have had bowel, gastro and bladder difficulties for over 20 years, although it is fair to say the most long-term and troublesome problem has been the bowel. I have had two retropexy (correction of rectal prolapse) procedures and a bowel resection caused by two prolapses of the bowel (due to constipation weakness in the anal canal). How I developed this is inconclusive; I have not had children and I will probably not now due to years of struggling with the symptoms of incontinence, pain in the gut plus bowel malfunction.

I was told by my consultant to go away, live my life but never strain! That means taking laxatives, which can give me urgent diarrhea, so I’m damned if I do and damned if I don’t. It has taken a lot of adjustments and various implementations to achieve some level of normal life.

For many years, I have seen various consultants paid for privately and via the NHS. I was offered neurostimulation, but after several consultations and tests I decided that this would be too intrusive with not a high enough success rate. It would also only help one of my symptoms.

Finally I came across a treatment that was recommended for me, and that was PTNS. It starts with once a week treatments for 12 weeks and after that you are put on a maintenance level which will vary depending on your success and what is manageable (cost and need).

The treatment is not intrusive. They place an acupuncture needle just above your ankle. You then feel a tingling sensation and it is left to work for half an hour. You are left comfortably sitting on a chair (quite often I read the paper!) or you may chat to fellow patients.

I certainly think anyone with similar symptoms to mine should go see their GP who can then hopefully refer them on; however this is not widely available but it is out there and some hospitals are able to offer this treatment.

I found the treatment a great help with urgency and control and the amount of loo visits were reduced. This did not kick in until the sixth or seventh treatment. However, I am now on a monthly treatment schedule and I seem to be struggling again. I will be mentioning this to the team after my next treatment.

After the years of pain, misery, discomfort and not to mention embarrassment I have found this treatment a great help. It is not a total fix but it’s certainly a helpful tweak to unmix my bowel and thus giving me a less mixed-up mind on how I feel and cope with this condition. I hope this helps anyone who needs it.

By the way I exercise, run and travel. The doors are opening. I have rekindled my modelling career. Ironic to think I once modelled incontinence pants for a photographic job! I have also had cognitive therapy, tried my own hypnotherapy with CD guidance and had years of love and support from my partner and family. So never give up, there is hope on its way.”

Brilliant IBS cartoons

A fab new blog called Chronically Me is home to some very original, but very relatable, IBS cartoons. The blog owner has kindly given me permission to post one here at IBS Tales so I’ve picked one of my favorites, called “Advice”. This one’s for anyone who’s ever investigated IBS treatments and been given mountains and mountains of conflicting, confusing and sometimes downright ridiculous advice. In other words, it’s for all of us. Enjoy! (Click on the image for a larger version.)

IBS Advice Cartoon

The IBS Tales forum is now open!

I am very pleased to announce that the brand new IBS Tales forum is now open! This new messageboard is designed to be a safe place for all IBS sufferers to talk about their experiences and share support, tips and discussions about all aspects of IBS.

You can find the new forum here.

I very much hope that you will register with the forum and that you will find it useful. I’ve set up sections for general discussions, IBS-D, IBS-C, UK sufferers and a special “Venting and Ranting” forum for those days when nobody understands just how tough IBS is to live with.

I hope to cyber-meet lots of you in the next few weeks and months!

Sheffield Research Study

I’ve been contacted by Vicky, a PhD researcher from Sheffield University in England, who is looking for IBS sufferers in the Sheffield area who would be willing to take part in a one-day course. And this blog will feature as part of the course! I’m a set text! Am a bit over-excited.

Vicky is an IBS patient herself, so I’ll let her tell you all about it…

“We are looking for volunteers to participate in a one-day study which will take place on 10 September 2012. Participants will work with other IBS sufferers and with medical librarians, doctors, student doctors and other healthcare professionals to search for, and discuss, the latest IBS research. We will read extracts from Sophie’s blog as part of the workshop.

The aim of my project is to empower IBS sufferers, challenge the stigma surrounding issues like incontinence and IBS, help patients to self-manage their condition and also to raise the profile of this condition so that there is wider recognition of the devastating impact that it has on our lives and so that it is given higher research priority.

The study is part of a larger project called Storying Sheffield, and previous participants have described taking part as ‘inspiring’, ‘life-changing’ and ‘empowering’.”

If you are interested in participating please have a look at the Storying Sheffield website.

IBS in the News

Just a quickie today about two IBS news stories that really highlight the impact that IBS has on us sufferers…

1) IBS accounts for more than 5000 hospital admissions per year in England. The figures were collected by The Health and Social Care Information Centre (HSCIC) who counted 5370 IBS admissions in 2011 and 5470 in 2010. Full story here.

So IBS is a condition that requires hospital treatment for thousands of patients. Tell that to the next person who says IBS is just an occasional nuisance.

2) A study published in the American Journal of Gastroenterology looked at the willingness of IBS patients to take risks with their medication. IBS patients told the researchers that they would accept a median 1% risk of sudden death for a 99% chance of cure for their symptoms using a hypothetical medication.

Think about that for a second. We’d swap a small but significant chance of dropping down dead in return for an almost certain cure. Would you risk death to cure your IBS? Many would. Read the abstract of the study here.