Bowel MRI with contrast / breathing protocols

Well, wasn't expecting that!

It seems to just get funnier by the minute. It was just a routine appointment to discuss my results of breath testing but my Gastroenterologist decided to do a physical exam as part of my appointment. He described my abdominal pain as 'diffuse' and listened to my GI sounds with a stethoscope., it seems he might of heard an abdominal bruit and had an idea? It wasn't till I spotted he had referred to it in the clinical notes after the MRI that I realised it might actually be true!

I might have a MALS. Median Arcuate Ligament Syndrome, otherwise known as Celiac Artery Compression Syndrome, Celiac Axis Syndrome or Dunbar Syndrome.

I had heard of this condition before as a few of my EDS group have battled severe cases and had a rough journey leading to major surgeries. Wasn't expecting to read this in the outcomes of my MRI though. I did wonder why I was doinf breathing protocols however.

Apparent narrowing of proximal coeliac trunk raises the possibility of median acute ligament syndrome, however accurate assessment is limited due to spatial resolution and non-dedicated sequence. If required, ultrasound can be considered to further evaluate.

So Tuesday im off for a Doppler Ultrasound with more breathing protocols to test the pressure of blood flow and presumably check the blood flow to the organs that may be affected which are a portion of my stomach, my spleen and my liver. I do also hope to confirm if my transverse colon is in fact in my lower abdomen which apparently is called a U-shape. This would explain the very low pain I get a few hours after eating. I'm sure all will be revealed once they have the whole picture. I cant for the life of my think what other scans they could do that they haven't already but apparently there are a few.

Update to come with results from my Ultrasound. Hoping that its conclusive and I don't have to spend more time waiting for a result. Even so, the only fix is surgery, laparoscopic or open... and finding a specialised vascular surgeon, so really i'm hoping its a no, but prepared for a yes. There is really nothing else that could possible top an artery compression for me but suppose its early days yet.

IMO, Fructose Malbsorption and Digestive Testing

I've spent the last month or so waiting to see a Gastroenterologist for his once a month clinic. He reported on my breath tests which he met with me about this week.

So it wasn't SIBO in the end. I'm feeling pretty thankful about that but he has confirmed that I do in fact have Intestinal Methanogean Overgrowth. 

My results also showed that I malabsorb Fructose. This has been the biggest shock as all this time I thought it was intolerance not malabsorption. Turns out im also not intolerant to Lactose, which is hilarious to me, that this whole time fruit and vegetables have been the enemy! Going vegan was the worst thing I could have done as all that coconut was doing me in. Pretty annoyed as the list of Fodmap, low acid and low fructose is getting smaller by the minute. The elemental drinks might be here to stay and replacing a few more meals once I see the dietitian again. 

The Gastroenterologist was concerned regarding my low weight. What? Hang on a minute! I've gained 6 kgs since I finished my breath testing. 45kgs was low... this is normal. I will have to watch that I don't shed too much now I have the energy to do a bit more exercise and housework. Now that spring is here and my garden is needing me Im definitely burning more calories than Im consuming, its a constant balancing act. Im just thankful that Im finding out now as I could of battled on for a while not knowing.

Outcomes of meeting? We talked about slow transit causing the IMO or IMO causing the slow transit? So he has referred me for a Colonic Transit Test. This is thus far the most interesting test so far! I have to swallow little bits of metal that will show up on an xray later on. He is positive the test will come back normal as most of his EDS patients have normal tests, there is very few that come back with Gastroparesis or Slow Transit confirmed. These are both rare and mine seems to be more of hopefully a curable IBS-C than a Functional Constipation. He also ordered a small bowel MRI as my anatomy is somewhat complicated, so ruling out there is any obstruction there too. Once we know for sure I can decide if I take the $1k worth of IMO antibiotics (56 over a 14 day period), a combination of Rifaximin and Neomycin. 

I've pretty much searched every possible corner of the net and looked for books on how to improve my diet from here and its not looking good. It's just a waiting game now. Update to come with MRI results.

When my normal test results weren't in fact normal

Endoscopy #2. 

It was touch and go that week as the whole house fell crook with a coughing virus and I thought surely being off all my pills (was asked to stop all supplements prior so have literally been off them since my breath testing (Vit B Complex, Vit C, Magnesium). I took a few sneaky Vit Cs and hoped for the best. The day came and I was snot and cough free so off I went.

It was later in the day so I decided to bus there. Thought if I was going to be laid up for the afternoon I ought to get some exercise. I masked up and got through town in good time and arrived at the clinic 15 mins early.

They took me fairly promptly and I did my pre-procedure stuff, got changed, toilet stop and waited... what seemed like a while, until I was called in. Nurses were still getting set up and I answered a few questions. They said "you were here not long ago?". Correct! They had found something which looked a bit sinister in my distal esophagus and I was there for another biopsy to see if we could figure it all out.

The nurse had trouble finding a vein in my arm and after sticking the needle into my nerve decided to give up and wait for my specialist to insert a cannula in my hand. They commented on the colour of my hands and again said "your veins are so delicate". Of course they are! ive been food and fluid free for 12 hours... dehydration not helpful. I explained my circulation issue and reassured them my hands were ok, they were just cold which makes them go purple. 

My specialist arrived and asked how I had been? I said doing ok as I had been to dietician for a chat, we had a plan and I was slowly working on getting some weight back on. I advised him that my throat was pretty ok after the last biopsies and that I was looking forward to an update of where we were at. 

After a very painful few minutes he had a cannula in my hand and we were off. Little did I know that later than cannula would be snagged and its removal caused a blown vein which took a good week to sort itself out.

Meds on board and throat spray in I drifted off and remember less about this one... and woke up being taken to recovery. There I felt really slow. I could hear the machine and new my bradycardia was playing up and that my blood pressure was low as even lying down I was dizzy. On my last reading before I mobilised I asked her what it was sitting at and it was about 91/62 which is low but pretty standard for me. I took my time getting dressed and only fell over once, luckily I was close to the ground trying to get on my converse boots.

Once next door and my throat had woken up I was served a vegetarian dairy and gluten free sandwich and to my delight a Kombucha, even my favourite flavour. The nurse came and read my results which was the ulcer had mostly healed, things looked healthier and he took more biopsies of the nodules. He was happy with what he saw, so that in itself was good news for me.

Its been a about 1 week since the procedure and to my surprise my results came in via GP. It seems that my distal esophagus had sustained injury from what appears to be gastro-oesophageal-reflux. I had a sneaky suspicion that was the cause even though my surgeon had ruled it out in the first instance.

So, where to from here? Looks like i'm back to the dietitian to think of a new plan and probably scripted more Elemental Drinks as the list of foods I can consume is growing smaller by the minute. I never thought there would come a time when I would not be allowed chocolate, soda or coffee. 

I see the new Gastroenterologist in 4 weeks time to go over my results from my breath tests and to talk about motility. I think that's definitely going to be an issue relating to my EDS and also now by most recent reflux situation. I've already started to make improvements to my diet (cutting out the stress eating, the chocolate, x1 coffee a day and really trying hard to stick to the Low FODMAP, low Fructose diet now it seems I need to work on the Reflux stuff too. Crazy though as I was hunting high and low but I found a book! The Low Fodmap Acid Reflux diet, so Im kind of feeling like there is light at the end of the tunnel. My E028 (elemental supplementation) seems to be going ok, the problem is I actually prefer the drinks to eating, I was having them for breakfast and lunch but finding i was still hungry after tea so mixing it up starting tomorrow and going back on my low fodmap cereal early morning and supplementing lunch and maybe an after tea, or second one in the afternoon... i'll see where I need it the most. 

Lots of reading, lots of research... and lots of waiting. So the story goes...

 

 

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.

Pain Management...Tricyclics and Exercise Plans

Not sure where I left it last, I really must get better at posting more often.

Well it's been and interesting few months to say the least! Covid hit NZ in a bit way again so I have been waiting since earlier this year to see the Pain Management Clinic at our local hospital, after completing their rigorous screening process of 6 hour online seminar and questionnaires. I had plenty to keep me busy with numerous things on the go, my teaching course, a advocacy course with EDS Int'l, therapy and assessment for our nieces, doing a month challenge for EDS awareness month, working full time and trying to figure out my long term plan with my newly diagnosed conditions.

So where am I at? I have completed my first session with the Pain Management Clinic for their Brief Pain Management course for Chronic Pain after reading their manual 'Manage Your Pain' by Dr Michael Nicholas from Australia. The Physio and Pain Psychologists we are working with are both really nice and the group im in obviously have their own stories to tell. I think most of it I already know, but just having the time to look after myself and get a bit of relaxed exercise has been really good for me, especially as I don't get out of the house much anymore. I have been back to the Rheumatologist, this time was kind of a second opinion really. He is happy with my progress and thinks I should bite-the-bullet and up my Amitriptyline to 20mg but wanted to rule out heart arrhythmias first, I have had some really low Brady-cardiac moments on the 10mg, including when I had Covid back in March, 47bpms which is really low for me, normally I only dip that low if Im sleeping. My GP did a EKG at their centre and so far all looks good so ive been on 20mgs for a few months now, apart from zonking out really early now (as soon as i sit down) things seem to be going ok. Im able to function the next day ok... but Im very grumpy and groggy in the mornings which makes school lunches, school runs and early appointments really interesting!

When i visited the GP for the EKG we decided that we were going to revisit my two major specialists (Bowel and GYN) to see if my long term plans are going to be affected by the EDS diagnosis. The first visit this past week was back to my colorectal surgeon as I have a prolapse, pelvic floor issues and slow transit/spastic colon issues (IBS). Due to my strict diet and daily movacole my physical exam went really well no further prolapse and my hemorrhoids are of very little significance and dont need surgery. That could not have been better news! We do however have a sneaky suspicion that there might be some issues around stomach and small bowel due to my diet needing to be so strict so before I revisit the dietitian he has ordered a Gastroscopy and a Hydrogen Breath test. If both of those tests come back normal, he will revisit the large colon to look for issues there. I still have pain, bloating and gas when ever I eat, not to mention reflux if I have anything outside of my daily, which is limited to only breakfast (fodmap muesli) and rice and veges for tea. The only other thing consumed is liquid, so im fasting for 12 hours a day, having a meal, fasting for another 12 hours. My weight is down to 49.5 kgs which is the lowest in a while and im definitely back in the underweight category. Not a bad thing as I recently went through a stress eating stage where I became quite unwell physically.

Next is the Gynecologist in another months time to talk Endometriosis, Hysterectomy and what that means with Ehlers Danlos.

I have also embarked on a personal journey to gain control of my chronic fatigue and Fibromyalgia (Central Sensitisation). From what I have read my exercise plan, diet and relaxation techniques (which are currently non-existant) should see a huge reduction in flares and aid me in getting the right mix of exercise and rest. Im learning a lot in the pain management side of things and to be completely honest, this is the first year of my life in quite some time Ive felt a reduction in my pain. It helps me to have faith in the process, as I only have me to help moving forward and its going to be a long and slow decline, so I need to be grateful and use the motility I have now while ive still got it. 

Next few updates im sure will be lengthy ones, and im sure this one will get edited a million times because I have forgotten to add something... brain fog is no joke and Im surprised I managed to communicate at all sometimes.  

For now I must go as my therapy app just went off, its time to take my Amitriptyline....

Hypermobile Ehlers-Danlos Syndrome with a side of Fibromyalgia

New year, new diagnosis and still coming to terms with what that means for me.

Who would of thought that a thumb surgery would result in my life being turned upside down in my 40's.

So lets recap...

This past decade of diagnoses for me (during 6 clomid cycles and 3 rounds of IVF) between the ages of 30 and 42 are as follows: Hypothyrodism, Renal agenesis, Pelvic congestion syndrome, Bicornuate bicollis OR Unicornuate Uterus (they havent decided yet), Spondylolisthesis, Scoliosis, Acrocyanosis, Bradycardia, Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, Irritable Bowel Syndrome, Fibromyalgia and Hypermobile Ehlers-Danlos Syndrome. 

To think I was labelled a hypochondriac. Growing up I don't ever remember much about the effects the above conditions had on me as I was too busy being a kid. I do remember my night terrors, my panic attacks and nausea at bedtime, my breathlessness, my chronic growning pains, my constant constipation. Anxiety, headaches, visual problems, brainfog, fatigue... I thought I was normal enough? HA! little did I know I was far from normal.

10 years into my journey of discovery and I feel like every now and then we do a little rewind. What a decade its been. There has been some really great and positive things that have happened. There has been tragedy. I feel like that is life and for every dark cloud I find a silver lining. 

My journey to EDS has probably been one of those silver linings. With diagnosis comes understanding, not only of my own challenges but those of others. It has reinforced my goal of becoming an advocate and I've been welcomed into the EDS community by a dazzle of amazing zebras that are all unique in their own way and have so much compassion for others. After successfully completing a qualification for Adult & Teritary Teaching as well as fostering two amazing young ladies and working full time I'm hoping to join the dazzle officially in some capacity to bring awareness and support to where its needed the most. I will be completing a Community Leader and Advocacy course with the Ehlers-Danlos Society starting in few weeks and look forward to where that will lead.

Meanwhile I was contacted about my Rheumatology follow-up a few weeks back and found out the Rheumatologist who diagnosed me has retired and I will be seeing someone new. I have been without support for a while after stopping my specialist physio appointments as could no longer afford them. I actually think I met him on my Dads AI journey and I actually look forward to meeting him. Will be interesting to see his view on my diagnosis and treatment plan. I'm refusing to up my Amitriptyline as its already having an affect on my health. It's working tho! my REM and Deep sleep have improved. I'm still waiting up sore but able to still function and drive which is what I wanted. Next will be looking into my BP, Heart and Immune side of things. I've managed to put on and maintain 4 kgs with the meds and trying to eat more in the evenings. All bloods NORMAL for a change, so have never been healthier. That has come at a cost however as my intolerance for food in general has not been easy. Eating is not something I enjoy and hope that will be something i can get a solid plan in place for. Finally I have the energy to exercise though, being able to do 5 kms on my exercise bike is a crucial step in recovery and management, as is my strenthening exercises to sort out my Proprioception issues. First things first tho, sorting my chronic pain and stress will be a key element of that. I'm on the list for a Brief Pain Management program which is spoken very highly of. When staffing issues at the hospital are over I should be starting that too. Everything is slowly lining up.

Oh, and we all got Covid. Will be interesting to see if any Long Covid signs pop up during the next stage of this journey.

Onwards and upwards... to be continued.