Update.

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Hey everyone,
So I know I haven’t really posted for a little while, I’ve had quite a lot going on lately. I’ve been back in the hospital a few times again for gastro issues and also gynaecological problems. They finally seem to have gotten to the bottom of the pelvic pain that I’ve had for the past few months and I’ve had treatment for pelvic infections, kidney infections and urinary tract infections. I am still struggling at the moment but I am now on another course of antibiotics for 4 weeks.
Last week I saw my gastro doctor and he reviewed my previous MRI results. He explained that it showed I had a rectocele prolapse which I was aware of but it is a shame that after my surgery it hasn’t improved like some had hoped. We discussed an NG tube for feeding/fluids as I am struggling with my stomach at the moment as I feel as though I am always full and am getting very bad nausea and reflux, this is due to my delayed gastric empyting. His concern is that if I have an NG tube and my stomach isn’t emptying then it may not be beneficial, however he also said we won’t know until we try. He has put my on a 4 week course of antibiotics which are used for treatment of delayed gastric emptying and I am going to be seeing him again in 4 weeks.
My joints are causing me some pain at the moment. I have been trying to do some exercises to strengthen my legs and this seems to be helping me massively but my shoulders, hips etc are still very unstable. Last time I saw my physio he asked me what I’d done as my shoulder wasn’t in place and he seemed shocked when I said I’d just rolled over in bed but for someone with EDS this is our reality. A simple knock can cause injury and dislocations/subluxations. I had to have my shoulder taped up to try and keep it in place and it really helped but unfortunately I had a reaction to the tape so had to take it off and now the instability seems to be coming back.
Next week I have an appointment with my cardiologist and an appointment for a flexible cystoscopy which is when a camera is inserted to my bladder. My urologist wants to check that everything looks okay in my bladder and that I don’t have a blockage or narrowing which could be causing a lot of my problems. If everything looks okay and my previous MRI results are okay then my urologist wants me to have a sacral nerve implant fitted. I am very nervous about this after my last surgery and there are lots of things that need to be done before I go for the surgery.
I have managed to stay out of the hospital now for 2 whole weeks which may not sound like long but for me it’s amazing as I’ve been in a lot this year. I am so grateful for the amazing people I have in my life who help me on my journey. Here are a few photo’s!

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Reaction the cannula and/or meds.

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Reaction the antibiotics.

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Thank you for reading,
Love & hugs, Charlie x

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My journey so far.

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I was thinking that it would be nice to share my story so far with you all, for those who don’t know. I’m Charlotte and I am 23 and my life has been put on hold due to disabling illnesses. For my whole life I have had multiple hospital admissions and suffered with chronic pain, kidney/urine infections, fatigue, dizziness and chronic slow transit constipation which has sadly got worse. I’ve also been bendy but just thought I was different.

After battling with the doctors and hospitals all my life for someone to take me seriously, I started seeing specialists in gastroenterology around 6 years ago. After exhausting medication and treatments to help with severe bowel issues I was referred to a colo-rectal surgeon 2 years ago and on 23rd May 2014 underwent major surgery to remove my large intestine. The idea of the operation was to remove the colon which wasn’t functioning and join the small intestine to the rectum and this would resolve all my issues. Sadly, this was not the case. There were complications to the operation and it was converted from laparoscopic to open surgery due to my insides being “all long and gloopy” and the surgeon not being able to see. He accidently snipped an artery and I lost a lot of blood. I ended up in high dependency having blood transfusions and one to one care. Luckily I recovered and managed to go home a few weeks later.
Unfortunately the operation doesn’t seem to have done the job it should have. I have since been left with more problems and more stomach flare ups. I also have a prolapse which causes me a lot of problems. I have been in and out of hospital and the hospital taking care of her told me they didn’t know what was wrong or how to help.
Whilst in hospital I did some research and found a neurogastroenterologist in London who had been highly recommended by people in support groups. After emailing his secretary as a plea for help I recieved an email saying the specialist was more than happy to see me, but I would need to travel to London and the appointment would cost £300. I am currently unable to  go to work and my sickpay stopped in June. My wonderful family pulled together and paid for the appointment and on the 15th November 2014 me, my Mum and my partner, made the trip to London to see the specialist. Within a 45 minute appointment he has diagnosed me with 2, possibly more, rare genetic conditions and things were starting to make sense.
I was diagnosed with Ehlers-Danlos sydrome, POTS, Raynauds phenomena and I need more tests. Since my operation I’ve been struggling with food as when I eat I get bad pain and sickness and my stomach bloats up so I look 9 months pregnant! I have been prescribed Fortisips to help give me nutrition. I had to leave University and my dream of being a teacher, I lost a job, am currently off sick from work and I still have a long journey to go on after the diagnosis’s but I won’t let it beat me! I’m awaiting appointments to see a geneticist, urologist, rheumatologist, dietician, colorectal surgeon and specialists in EDS and PoTs. I hope that now I have diagnosis’s I will get the right help to manage my illnesses and I can return to University and pursue my dream of being a teacher! It may be a long journey and it may be tough at times but I am determined not to let it kick me down and to see the good in every day. I am also determined to educate others and raise awareness of EDS, POTS and Gastroparesis on my journey!
Thank you for reading my story and thank you to those who have helped and continue helping me on my journey. I have some truly amazing people in my life who pick me up when I fall down (sometimes literally) and I wouldn’t be the person I am without them.
Why not send me your story to charlieanneharris@hotmail.co.uk and I can share this on my blog to help us raise awareness of why this condition needs funding for research and greater awareness within the medical profession.

Love and hugs, Charlie x

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This was me in recovery straight after my surgery on 23rd of May.

 This was one of the first times I used my phone after surgery. It was a few weeks later and I had been moved from high dependency unit to the ward., so it was a great day!

This was one of the first times I used my phone after surgery. It was a few weeks later and I had been moved from high dependency unit to the ward, so it was a great day!

 My bendy thumb, one of the symptoms of EDS.

My bendy thumb, one of the symptoms of EDS.

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Day 8

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Day 8 – A song and photo to match your mood.

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Today I have woken up and the sun is shining and it’s a nice temperature. What I would give to go for a lovely walk today! I like to make the most of my days as we don’t know how many we have left and the fact that I can’t do the things I usually enjoy at the moment, like walking and bike riding, really gets me down. I feel as though as I am wasting my days sitting here but my partner often reminds me that I am not wasting my days, I am getting better so that I can have more good days in the future. I managed to eat a bit of dinner last night and wasn’t in excruciating pain afterwards to I am hoping that my antibiotics and beginning to work. Bob Marley always cheers me up and I thought this song quite fitting to my mood today and the picture I have posted is something I must remember. Hope you all have a great day.

Charlie x

What is small intestinal bacterial overgrowth (SIBO)?

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The small intestine (small bowel) is the part of your digestive tract that connects your stomach to your colon (large bowel). In my case this isn’t right as I had my colon removed and my small intestine is now joined to my rectum. The small intestine digests and absorbs about 90% of the nutrients from the food we eat. The whole of our digestive tract contains bacteria and small intestinal bacterial overgrowth (SIBO) refers to a condition in which abnormally large numbers of bacteria are present in the small intestine. Small intestine bacterial overgrowth is often associated with other underlying illnesses and some of the symptoms include:

  • indigestion
  • diarrhoea
  • abdominal pain
  • bloating
  • excess wind
  • constipation

But how are the symptoms caused? As bacteria is digested in the intestine it creates gas. The gas can then build up in the abdomen causing abdominal bloating or distension. The distension can then cause pain and the increased amount of gas causes wind. The bacteria are then thought to convert food into substances that are irritating or toxic to the cells of the inner lining of the small intestine and colon, which then results in diarrhoea. There is also some evidence that the production of methane gas by the bacteria may cause constipation. When there is a large amount of bacteria in the large intestine it can compete with the human body for the food that is eaten. This can lead to malnutrition with vitamin and mineral deficiencies. In some cases, the bacteria use up enough food that there are not enough calories for the body, which leads to weight loss.

If the bacterial overgrowth is prolonged and severe then there is a chance of it interfering with the digestion and absorption of food. If this happens the deficiencies of vitamins and minerals may develop and patients may lose weight. Some patients also report symptoms such as body aches or fatigue and symptoms tend to be chronic. Patients can also experience symptoms that fluctuate greatly and it could be months, years or decades before a diagnosis is made.

Small intestinal bacterial overgrowth is usually treated with antibiotics, which have been very effective. The problem is that if the underlying cause is unclear then symptoms frequently return when the antibiotics are stopped. It has been recognised as a problem with severe disorders of intestinal muscles and intestinal obstruction. Probiotics are also used in people with SIBO.

For more information on SIBO I found these two websites very helpful: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo?page=5
http://www.medicinenet.com/small_intestinal_bacterial_overgrowth_sibo/page5.htm

Charlie x

Today.

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I visited my GP today with the letter from Prof Aziz explaining his impressions and recommended management plan. Prof Aziz suspects that some of my gastrointestinal symptoms are potentially related to small intestinal bacterial overgrowth. I am going to do another post after this one to describe SIBO in more detail. He has prescribed me the antibiotics that have been suggested so I am hoping that these will help me soon. He is also going to arrange for me to see some of the specialists who have been recommended to. Lets hope this gets me on the right journey to a better quality of life!