Visiting the dietitian & EDS

Today was my appointment with my new dietitian. I've seen a few over the years, most of which have been helpful, to some degree. She has been the most helpful so far. Of the research on FODMAPs ive found online ive never really understood it as well as I should, until I got my breath testing done.

I dont know whether its part of my OCD but I research the crap out of most things. Its not that im a know-it-all or want to appear as one, its why not be informed? It has helped me in the past to be knowledgeable about anything that is medically challenging myself and my family and now on my quest to learn inside and out my future with EDS, I may be able to help a few others along the way.

So turns out even she agrees that im a bit medically complex by looking at my results. I still have to wait for November to find out from the Gastroenterologist what the actual diagnosis if any and what the plan is, but now im hoping its NOT SIBO or IMO as even thought are apparently treatable, the treatments are hideously expensive (NZD$2,000). On the other hand Fructose Malabsorption is a pretty untreatable condition and would be an ongoing issue.

Today we talked about how my avoidance and restriction is leading to an eating disorder. Finally I can be in a room where I can talk about it. I told her the horror that was the last month of exlusion diet, severe constipation and dangerously low BMI. I have managed to gain 4 or so kgs back but not in the right way, bowls of low FODMAP muesli and a block of plant-based chocolate most nights, while it was enjoyable and worked, has now left me in a bit of a state. We talked about what is and isnt working most of the time. She knows EDS and its GI tract issues well. She already knew before I came in today she was likely to prescribe me sometime to help. Its called E028 (E stands for Elemental). Its a meal replacement drink that contains a lot of amino acids, omegas and all the things my current next-to-nothing diet doesn't provide. The chemical list in the ingredients made me shudder but willing to try anything... it also means if I have a day where i dont want to eat much i know im still being safe. Its not tube feeds so Im feeling super grateful really as im still able to eat...  

Things are just going to be very different from now on... 

Next stop, Gastroscopy 22nd September, watch this space for updates!

Endoscopy cancer scare, SIBO testing and GYN followup

Gosh, what a few months July, August and September have been. 

Everytime I finally sit down to blog I'm either distracted with work, Netflix or just too damn tired as once I take my Amitriptyline at 9.25pm I'm unable to sometimes string a sentence together or think of one to start with.

What have I been up to since I blogged last? 

I visited my Colorectal Surgeon at the Digestive Clinic back in July and he checked me over again, my prolapse etc being no worse than when we met last. We did get onto the subject of digestion. I spoke with him about the pain that I get when eating and it was decided that I would undergo a Endoscopy procedure to check for Helicobacter pylori (H. pylori) infection or any bacterial issues or overgrowths. I was booked in few weeks after my appointment. On the day I opted for the sedative and I'm glad I did as they found 10 nodules (small tumors) and a 1cm ulcer in my distal esophagus. I was quite groggy when she told me shortly after the procedure. Part of his provisional diagnosis was HPV? what the hell. I had never heard of that type of infection growing that far down? I handled recovery well, no bleeding issues and embarked on a 2 week wait for results. What a harrowing 2 weeks it was, thinking I had esophageal cancer! Meanwhile I waited for the booking for Breath testing and just hoped for the best. Results in... they came back as normal? No what the hell! no HPV, no cancer? Not even Helicobacter pylori (H. pylori). The nurse from the clinic had a good chat with me and advised that my surgeon would like me to retake the test to get better and possibly bigger samples and then he's going to take both slides to a meeting with the pathology team. Typical, I'm always the complex and unusual one! next one booked for few weeks time. Once he knows what it is, he will decide if he removes it or monitors it. For all we know, it may have disappeared by now. 

Nurse phoned again, breath testing was booked and I've just this week completed my 4th Hydrogen Breath Test and waiting for a booking with the Motility Gastroenterologist, and the Dietician. 

Breath Test results...

Borderline Positive for H2 and Methane on Lactulose. Highest result of 32 ppm and 76 ppm.

Negative for H2 and Methane for Glucose.

Negative for H2 and Methane for Lactose.

Positive for H2 and Methane for Fructose. Highest result of 60 ppm.

Not sure if this means anything with change for me diet wise but it may revise my diagnosis of IBS-C? I'm still on a strict FODMAPS regime. It might mean a course of Antibiotic treatment for either SIBO (Small Intestinal Bacterial Overgrowth) or IMO (Intestinal Methanogen Overgrowth). I will probably do a whole separate post on that one. Some one on my IBS NZ support group says it means nothing. I would like to stay a little more positive on some type of relief! I am getting a lot of pain and bloating and by restricting I have now dropped as low as 45.5 (BMI 17) while testing. I found a new chocolate from Whittaker's that was plant based and made from Oat Milk, it may not be gluten-free but it helped me put 3 kgs back on! I guess it will be up and down for the next wee while.

What else has been happening? I caught up with my GYN which I think I advise previous post which was on the cards. Main reason for revisiting her at this stage was pain levels and heavy bleeding, unusual cycles. We only resected my Endo and removed my ovary in 2019 so wasn't expecting much to come out of the appointment. She was really surprised to hear of my diagnosis but said the Fibromyalgia made a lot of sense as I 'feel' things differently. Heighten pain levels for periods, endo, bowel movements and even bladder irritation. She ordered another Ultrasound to check on the bulkiness of my uterus and see if Adenomyosis had turned up, this is some thing I will be regularly checked for and will need a hysterectomy for. The ultrasound looked fine apart from adhesions on my left ovary again which wasn't moving. This will be addressed when I have a significant rise in pain levels, until then, there is no treatment. The more surgeries I have, the more adhesions I will get, but will need to keep an eye on any symptoms of deep infiltrating lesions on my ureter. This would cause significant issues and would need dealing with ASAP. During testing she also ordered another AMH level to see if i was peri-menopausal with the removal of one of my ovaries... but alas... I came in at 8, which is the top level of egg stores for my age group. Every AMH test is a dagger really as good egg stores have always been the case for me, but IVF off the table for us. 

So where to now? I'm still on the journey of working on my self-care plan. This was my reason for looking into Chronic Pain services here in Christchurch. I have now finished up with the Brief Pain Management Clinic at Burwood Hospital. Not sure I got as much out of it as I thought I would. The book was an interesting read so Ive definitely been given the information to be successful in managing my own pain, now I just need to get on and do it. I've also completed the Community Leader and Advocacy program via The Ehlers Danlos Society International and engaged with the EDSNZ group and I am now admin on the South Island support network, so looking at doing some extra training in Human Rights in Disability, Disability 101 and also have graduated from a Adult & Tertiary Teaching Certification so looking forward to putting all my research and study to good use to help others with chronic illness in the coming months.

So... it's as always, an ongoing saga. 10 years of blogging this year and I'm still looking for answers! Chuck being a foster Mum, working full time, navigating the world of mental health in children, sensory processing disorders and traumas affect on the brain in there and I'm definitely learning to keep on the bright side of things.

Next update will be after my Dietician appointment, then Endoscopy #2.