Avoidant / Restrictive Food Intake Disorder (ARFID)

The report from my gastroenterologist came in, as you know, I get copies of all my reports so I am well informed before a follow-up or any additional conversations I have with my referrals as I've spent the better part of 10-12 years being referred from one specialist to the next.

There was one part that stuck out to me. After our conversation at the clinic about what I was and had eaten during the year, what my dietician and I came up with as a plan, he was shocked to hear I was on next to no solid food and relying heavily on the E028 nutrition. The conversation then turned to my restricting and any problems it is causing me and might cause in the future. "I feel better when I don't eat" was not something he was expecting. I have reduced pain, better sleep, more energy, less fatigue and reduced IMO/GERD symptoms. There it was written into the report, could it be ARFID? Wow, someone finally said it, could it be an eating disorder? I prefer the term disordered eating to be honest. It was time to start the discussion I suppose, but of course I was reluctant to admit that I might have a DSM-5 Mental Health condition that was causing my symptoms?? Something functional he called it. After much research he was possibly right? How could that be? 

This topic may feature quite heavily in the next few posts, so here is a quick rundown of what ARFID is and how its diagnosed.

Esophageal Dysmotility? Barium Swallow and EAST testing

My GP and I were slightly perplexed as to why eating is such an issue for me at present. It causes me a great deal of discomfort and fatigue, but we are running out of things to explore for answers. I was referred back to my Gastro for further investigations. Part of my EDS diagnosis was to both get an understanding how long term it would affect all of my connective tissues and stroma, so it was key to find out if swallowing had any muscular dysfunction attached. 

There were 3 options, barium swallow, manometry or Acid ph testing.

He said while the barium swallow may not give us much, it would give an indication if further tests were needed.

My gastro ran a basic allergy panel to check for sure if I was allergic to any of the classics like dairy, wheat, egg, fish, shellfish, nuts. All came back normal, so much for the wheat and dairy free testing back in 2006. That started a long journey of trial and error which ended up at FODMAPS, which is where the the restricting began. Go figure.

To be honest the barium swallow x-ray was probably my second worse test to date. The Barium is really thick and gritty and causes instant reflux. The whole test did not take long and I was able to get instant answers from the doctor who performed it. The clincher was whether or not I could swallow the marshmallow after only a few bites. Who knew my fate would come down to a marshmallow. Success! Was happy to hear it all went well and there are no issues with my oesophagus musculature or swallowing.

Results went back to my GP and Gastro. The wait for a reply began. 

Meanwhile I had decided to stick to my liquid diet and try to add a few more options to it, little did I know that would be my undoing.

GYN & Vascular re-visit

Meeting up with my GYN again after a year was interesting this time around as she wasn't expecting the news I had for her when I met with my vascular surgeon. Finally an answer for my pelvic congestion syndrome and more information for us to discuss. Soon we will need to make a decision re a hysterectomy, we both want my uterus out so we can finally confirm if I have Bicornuate Bicollis, but as my AMH is still way high, I'm still pretty far from being in the position to be able to do that without HRT which is scarce to find here in NZ at present.

I discussed with her the possibility and she is really reluctant to remove it I enter menopause properly, I'm in perimenopause due to my ovary removal. Also until we had a greater understanding of what my blood flow would be, so back to the vascular group for answers. It turns out that compensatory flow is a thing and it would find a way round, believe it or not the removal of my uterus would actually improve my pelvic congestion permanently but we won't know until we go there.

It's a tough decision as I obviously want to be rid of any of the problems it gives me, but I also will still have a 'cycle' and all the problems that go along with that, my Adenomyosis would have to get a lot worse to get to the stage of operating, so looks like checking yearly is my reality for now, just another surgeon in a holding pattern until things naturally decline.

As part of my long-term care plan, I want the decision to be based on best outcomes and willing to trust the experts and wait and see... I'm sure around July this year, I will have a re-visit and update on this.

 

Lap. Surgery and Recovery

My follow-up with my new specialist was probably the most informative appointment I have had in a long time. He was my 15 specialist and had only just met me but had taken the time to study my file and really look at my case.

Not only did he understand my conditions he had a plan for anything he thought might adventuate and had a plan. We talked at length about the cyst, it's location, the risks and what might happen if he found anything in there he didnt like the look of.

Surgery was booked that following week once I got prior approval sorted and filled in all my paperwork. 17th July was the day, first day back at school for the girls and a really busy week at work, but we made it work.

I had to go off all my supplements two weeks before so decided also to go nil-by-mouth also for those two weeks to assist my body with its pains levels leading up to the surgery. Best thing I ever did as was ready and comfortable on the day. I only really shed about 500-700g which is good for me. I had weighed in at a whopping 51.6Kgs at pre-op appoinment... which was a win!

I arrived with DH to what looked like a hotel suite. It was a lovely room with and ensuite, with all I needed, and a great view as it was a nice sunny day in the middle of winter. I got settled and DH went and got a few trashy mags so we would have a distraction for the hour wait for the surgeon, anaethestist and the nurses to turn up to cannulise me and do my obs/covid test.

After chatting with the surgeon again re the plan, I gowned up, stockings on and jumped into bed. The anaethestist had his chat and then we were ready to go. Fraser walked me to the lift and then off to theatre we went. 

It is always a surreal feeling climbing from the gurney onto the operating table, there are several people hovering about chatting with you (this time about my tattoo), when the other half are very serious and getting ready to put you under. Seds in my arm, mask on, night night.

Woke up to a very busy recovery ward, they avoided giving me tramadol this time and think that really helped as i sleepily ate my iceblock and struggled to keep my eyes open. It wasn't long till I was heading up to my room again and DH was waiting for me. He had heard the news before I. Just a cyst he thinks, was dangling there ready to be removed and was easy-peasy. No sign of Endo at this stage that he had to deal with. Appendix in normal place. Couldnt of been better news really.

I was soo sleepy I managed to ask DH about 3 times what he had for lunch even though I knew the answer. We visited for a while and they got me comfortable and medicated and dosed while DH left to go sort kids. 

Dinner time came and went for the other patients on the ward. I waited until my drip bag had finished before asking for one of my nutritional drinks, just to spread out my fluids as getting up for a loo stop was not top of my list for then... but eventually managed to get up on my own and go, which is a first, normally I would have waited hours to attempt. I put on my nightie and fresh knickers and boy did that feel good.

I watched a little telly to wake myself up a bit then my Mum came to visit. I was lovely just to sit and chat with her, we don't often get the time. I knew it must be getting on a bit so we vid-called the girls to say goodnight and re-assure them I was ok. I've been using this as a learning experience for them as sometimes you have to do things that are hard, but you are stronger than you think. Hope it gives them some resilence when it comes to their own health journeys one day.

The night was long, interrupted and painful. You always look forward to daytime, especially when you know your family will be there soon, its lonely in a hospital room when you are feeling poorly. 

It went so well it could of been a day surgery but due to my complex history they like to keep me in overnight. Being home is defintely harder to recover with constant jobs to do and children needing you. Blood pressure still a bit low but keeping up my fluids. Pain level mostly under control but happy to have some pain if it means not taking Tramadol. It's hard for me to rest, but I'm just doing my best.

Follow up with surgeon in 4 weeks time, pathology report still to come and photos to receive of the operation. I will post when I have more information about outcomes.

Next week I'm meeting with my OB/GYN to discuss my dilated ovarian vein and my stuck ovary, see what the long term plan is for that. That will be a whole other blog post...

To be continued...

Peritoneal Inclusion Cysts & Liver MRIs??

Just when you thought things could not get any weirder then came the cyst.

Its pretty common for every scan I have to find something else and its pretty common for anyone of my age group to have random finds on their scans, but when one follows another and they become known, then we have to make decisions and deal with things.

So, there is a cystic type structure adjacent and just behind my liver which appears to be a benign cyst but they are not entirely sure. Its gradually growing in size, only a bout 2-3mm in 3 months but that is enough to be curious about what it is and why its there. They believe its a Peritoneal inclusion cyst either caused my my Endometriosis, my previously existing Ectopic Ovary or scar tissue from my surgery.

Who would of though removing what could turn into something sinister would cause something that might turn into something sinister.

So Im off for a Liver MRI with contrast on Tuesday coming to find out if we can get to it or its staying put. While the thought of someone pushing my liver around to disect and drain my cyst and then hoping for the best scares the crap out of me I now know thats the reason for some of my rib and back pain after pushing on it sent me into a tail-spin. I wonder what else they will find on this adventure?

Watch this space for the next installment....

Facing a world without food

I have never felt better than what I have when I stopped eating altogether. I never wanted food to be the enemy but its starting to feel that way.

I was shocked to think all the time I have been trying to navigate my way through the fodmap diet and unaware of my fructose malabsorption and my IMO I was unknowingly contributing to my world of pain. 

Surviving only on E028s and Hydralytes Ive been very surprised at how great I feel, how much energy I have and I am sleeping better. I could of done this years ago. The biggest concern we had was maintaining weight but my regular consumption of plant-based chocolate which is my stress-eating go to, has meant that even thought it sets of my GERD its helped me to stay above 50 kgs even while my drinks ran out and I waited for my next dietician appointment.

My dietician is the most caring, compassionate and smart person I have ever met and even though I have seen a few, she is indeed my favourite. I be understood is everything. She understands my intense restriction, she understands my dear of eating and she understands why I need to keep things like chocolate and coffee in my life... as they can't take it all just yet. If my nodules get worse and my osephageous affected, it might be time, but not just yet.

We have decided to carry on as we are until we get more answers about the rest of my new discoveries. She upped my E028s to 3-4 a day and now im going to try little snacks of my soluble foods like eggs, rice, bananas etc. Only if I feel like eating solids otherwise Im solely on a liquid diet as I enjoy other drinks like Kombucha and Soda & Lime. I even found a 0% alcohol beer that didnt send me off the deep end... so if I want to go out, I can feel that little bit more normal.

Whilst it doesnt feel normal for the family, its working for me. I have to keep an eye on my kidney whilst I loose too many fluids and esophageous for now eating all my no-no foods but its sounding pretty good that Im not having to be tube fed, so I need to lay off the chocolate and coffee and find a better way of dealing with my stress in the meantime. 

A future with Vascular Compression Syndromes...

I met with my 15th specialist. This time a Vascular Surgeon that specialises in transplant surgery. 

Can you even believe that, that is 5 more specialists than 1-a-year for the past 10 years of this blog, and my journey.

He was a very nice man that seemed to find my results a bit challenging as even though he has probably seen it all, he probably hasn't seen it all happening to the one person. He called me 'complex', as they all do. I've decided that is my next tattoo.

We straight away got into my reason for meeting with him today and that was to discuss the possibility I have a specific compression called MALS. It turns out I do not. I have what he thinks is abnormal stroma (connective tissue holding my organs in place) and blames my Ehlers-Danlos Syndrome for growing that way. He believes that its a stenosis that will continue to possibly occlude eventually and there is no way of fixing it. We have to just watch out for aneurym and see what my body does in the way of bridging or redirecting, and if Im symptomatic at all once it happens. I have never in my life disliked a 'wait and see' more but when he said operating on me would be a mess and more than likely make it worse or me more symptomatic, I agreed that a wait and see approach was a much safer option. I brought up the sonagraphers opinions on my left ovarian vein and my pelvic congestion syndrome and he immediately went to my CT / MRI with contrast that I have had previously done and there he pointed out a clear indication of Nutcraker Syndrome and said thats most likely causing my varicosies in my pelvis. Again, watch for symptoms. As I more than likely have the trificta we will watch out for addition signs in my legs of May-Thurner Syndrome and that will probably be diagnosed in due course. I will book a separate appointment about that at a later date.

So there you have it. Is it the answer to my GI pain? He doesn't think so. Is it a contributor to my other symptoms? Pain, posture, circulation, breathing, POTS? We will see. Most worried really about the NCS affecting the artery of my only kidney so following up on that one in late July with my OB/GYN and possibily with my Uroligist. Lets hope I dont add a Nephrologist to that list.

I visited my GP to go through the results and she was a little surprised but not surprised at the same time, this has been as much of a journey for her. We decided without a diagnosis of MALS, we would call it 'celiac artery stenosis'... and list them as VCS on my surgery or medical forms moving forward.

"VCS - Vascular compression syndromes are a group of conditions that occur when a person's blood vessels are under abnormal pressure, limiting the size of the blood vessel and the amount of blood that flows through it."

So more updates to come once I navigate this new area of my anatomy. I'm now part of another rare disorder group and many of them are part of my EDS community but we each have our own battles and stories, so meeting with some soon to find out how they are getting on.

Onwards and upwards.