A bit of a journey and back again

[gotumtum]

Hi All

Some of you may remember me from a few years ago. I have had an interesting journey over the last few years. I have collected diagnosis' along the way including Gallbladder issues (had it removed) Pancreatitis ( about 6x) which was eventually determined to be caused by Sphincter of oddi dysfunction, ( have had the valve cut 2x) - and still have issues wth this and Pancreas divisum ( alternate pancreas plumbing option) which complicates the above. I have recently ( about 12-18 months ago) suddenly changed from diarrhoea to horriffic constipation, and have concurrently been managing significant 'womens troubles'. I dealt with the womens plumbing issues first as it was hard to know what was causing what, and have had a hysterectomy ( am quite young to have this) and pelvic floor repair- I was diagnosed with adenomyosis ( a type of endometriosis within the muscle layers of the uterus) and various prolapses. - dealing with some of which has resulted in an increase in quality of life. The Gyne specialist was a bit of a shock as I am not used to having specialists say 'here is what is wrong, and this is how we fix it'( not to mention a list of things needed to fix, but anyway). But I would really like to be able to poop normally - and this post is a bit of a 'here we go again'.

I am about to have a tele appointment at the end of the month with my gastro specialist which I am dreading. Partly because I think he will suggest colonoscopy - which kind of feel like I am taking myself to the vet!?, but also that whole -will the specialist listen - and take me seriously thing.
I am over having to advocate all the damn time (apart from the Gyne stuff)- every diagnosis above took...perserverance...- and also the waking up from a colonoscopy for them to say - its all fine. Well people - its not fine. I can't poop. and it really sucks. Partly this post is me acknowledging to myself that I have been through a bit, and that some friendly 'faces' may help on the journey.

( rant follows:!)
I am over having to plan taking 'poop medicine' around school drop offs and pick ups. I am sick of my kids seeing mummy take 'poop medicine'
I am sick of impaction protocols and enemas
I am so over having to take poop medicine in front of my family - they don't care, but it just feels degrading after a while
I am sick of having to discuss poop with medical professionals ( but am very thankful to have discussing gyne stuff be crossed off the list)
I am over having to take kgs of medication for me if we travel
I am sick of the 'will we being calling the ambulance tonight' debate
I am sick of being in pain and thinking, did i eat the wrong thing, or have i not pooped enough
I am sick of my sphincter of oddi flaring when I get constipated, or eat the wrong thing.
I am sick of looking like s**t on the school run where I can feel the principal and the other parents look at me, in the same clothes, white face, massive bags under eyes
I am over having to fast so we can travel (in case i take too much poop medicine...)- it a tricky balance...
I am over having to think about poop. My son is just out of nappies, and now its my poop I am having to work around!
I am so over discussing my digestive system with my husband. Between the gyne stuff and his recent eye surgery, the poop issues and the covid everyone at home schooling joy/stress... But the poop discussions don't help.
I am over the waiting, and the being in limbo. ( although I am sure many people around the world are dealing with this with the covid situation.)
I am soooooo over the body problem whack a mole

So anyway this is me saying hi again. I still wonder if IBD is on the cards. The gyne found adhesions during the surgery, which is interesting, added to the ongoing pancreas issues, the constipation and a few ulcers found during one ERCP two years ago - I think it is on the table again, along with the dreaded IBS. If its OK with you guys I need to hang out here for a while. You are all so kind, you listen, offer useful suggestions and don't judge people on their pooping. ( or mind discussing it) Which is what I need right now. Unfortunately.

So yup - any constipation tips? happy to answer questions.
I have tried: more exercise, more water, more fibre, less fibre, various medications.
I gave up on being 'fixed' a long time ago - I would just like to be a bit less broken, and regret taking pooping for granted


T

 

[gotumtum]

Thanks for the hug

 

[gotumtum]

Update: Had the appt with the Gastroenterologist and it went well. ended up going in to see him as my husband had appt on same day in same town.
He wanted to review the sphincter of oddi situation first before looking at the constipation situation - as I have not seen him in a while- He laid out a plan - involving a sphincterotomy ( revision) if necessary of which ever sphincter makes sense depending on which enzymes are raised. He also reminded me that my situation is pretty rare (pancreas divisum + sphincter of oddi dysfunction with pancreatitis, multiple sphincterotomies needed as well)- not sure why they do this - does not make me feel any better! Also reminded me if I need another sphincterotomy I have to have it in a different hospital to usual as they don't have the gear at the previous one anymore There was discussion of reducing one medication slightly to reduce side effects which has been helping hold SOO flares at bay and outlined how to do this.

Re constipation: He believes that bowel may need a reset, because its function been disrupted by many things and for so long. But will do colonoscopy to be on the safe side. Have an appt for a colonoscopy on 24th of this month with a double prep to look forward to- Ha. This should provide 'reset'. Following this he will discuss a plan for a prescription for something like psyllum - cant remember what - safe for long term use, to be increased slowly. He also stipulated (yes it was kind of in that tone as in - in the kindest of possible ways -' for a good outcome we will do this') - that in the past they had had to use maximum sedation to keep me comfortable, and with having had a hysterectomy this time would need a general anesthetic because of the potential need for extra sedation which would not be possible. I did not expect this, but it makes sense. Added hassle after tho

I had reservations regarding the 'like psyllum' thing which I have had probs with in the past. but have a wee way to go before that point anyway. Also had reservations regarding decreasing med but was looking forward to reduced side effects...

Unfortunately then had an episode following weekend with the sphincter of oddi on sunday night. Also horribly constipated and massively bloated. Looked 9 months pregnant - and I carried really massive when preg with my kids. Got bloods done Mon am as per standing order from the gastro dr and the liver enzymes were raised. Will let him know. Unfortunately had not decreased meds yet - so will pause on that front. Also not sure if laxitives set off SOO.
a world of fun!

Anyway, I spent some time today scraping pteratactyl (sticker) off the dining table in between trips to the bathroom as the laxitives finally kicked in.
Also found out that Mum will be having her thyroid out the week after my colonoscopy. She has had heaps of surgeries so should cope well, but unfortunately I can't be there when it is done - prob more to support Dad, and post surgery pain management - they have been through a lot. Hopefully I can set some things up while I am prepping for colonoscopy - Haha!

I am aware that there is a theory in medicine = 'think Horses, not Zebras'. To be honest I do really think we are heading toward a horse (IBD) rather than a selection/ ( herd?) of Zebras. This will be my third colonoscopy, but the last one was more than 4 years ago so maybe there will be something to be seen...

There is a certain sense of resignation at this point.

There is also another emotion going on - 'out of body sympathy for oneself?!' Its hard to explain but let me try: I know I need to figure out the constipation, and get onto a more long term way of managing it, and get the colonoscopy to be safe. From a being an adult and being sensible perspective.
Do they call it 'adulting'?
Anyway, the other feeling is a sense of 'sympathy' for my body (the physical me I suppose, but from an external point of view -ish?) in that I know that this is going to be another 'thing' which will cost me spoons and energy - physically and spiritually. The planning, and the filling out of the copious amounts of paperwork, and arrangements, and packing, and travelling and planning the prep liquids, and the prepping itself and anxiety about travelling to the procedure place with a dodgy tummy, and the waiting and all the medical questions, and all to most probably be told: you're fine. Let along saving some strength to sort out the other various medical -and just plain life - things going on.
And also the trying to not be a cranky mummy while I get through all of the above.
Thankfully the kids wont be around while I prep!

I do realise that I am incredibly fortunate to have a colonoscopy this soon, and also at all with the world messed up wth the pandemic, and that I am privileged to be offered this Peace of mind, let alone have healthcare available...

So a shoutout to all of those out there on the countdown to colonoscopy.

My thoughts are also with people whose lives are being changed forever by this pandemic

T

PS:

Found this on a bbc website...
'A group of zebras can be called a dazzle. Zebras can also be called a herd or a zeal. A group of hippos is called a bloat.'

Yeah-No- a dazzle sounds a bit fancy for whats going on in my world. Maybe I'm a hippo...

 

[gotumtum]

So- Things were going really well post colonoscopy.
I was managing the constipation with 2x molaxole sachets, magnesium and b1, hi fibre gluten free cerial, walking for an hour plus pilates every day. I was exercising, gaining muscle. Things were looking good.

Then wham. An (assumed) sphincter of oddi event. - Pain, nausea, diarrhoea.
Which didn't really stop. I also get a sort of mental confusion with it - maybe related to the liver enzmyes or the inflammation?
I had had bloods done the previous week to monitor my hba1c, and liver etc.
GGT: 35 U/L (10-35)
AST: 30 U/L (10-50)
ALT: 35 U/L *** (0-30)
Amylase normal
CRP was not done, everything else normal

Had blood done a couple of days after the change

GGT: 44 U/L *** (10-35)
AST: 23 U/L (10-50)
ALT: 31 U/L *** (0-30)
CRP: 9 mg/L *** ( <5)
Amylase and lipase normal

I now only have dirrahoea, and food goes straight through. Normally things go back to normal within 36 hours and they have not.
Even chicken stock, dry crackers go straight through me. I had been limiting food intake and will have to now stop entirely as I have to travel tomorrow. I don't want to go back to loperimide because the previous massive issues with constipation.
To top it all off, I had an episode of night time fecal incontinence while I was asleep. Bit of a low point to be honest.

I have emailed my gastro specialist and he said he will have a look through my records and get back to me.
At this point I am even questioning whether this is sphincter of oddi.
I realise that the CRP is not a massive elevation - as with the liver numbers.
I had made some peace with the d. Better than Constipation I thought ( until the night time issue)

Anyway, feeling like I am going mad. And a bit alone.

Hoping other's bodies are making more sense that mine at the mo.

 

[Jo-mom]

I'm so sorry you are going through this and feel this way. I don't have any info to offer you but just wanted you to know that we are here for you. I hope someone with experience on this front will be able to help you. Your blood panels are within normal so hopefully whatever this is will pass soon.

 

[gotumtum]

Have heard back from the specialist.

We are looking into doing another ercp and sphincterotomy on the liver side, however we are approaching with caution because of the risks. I requested/suggested a scan to check that there are no other factors aggravating the sphincter of oddi and given my left sided front pelvis pain, back of pelvis pain ( and also I wanted small intestine checked because of the continuing puzzling constipation/and diarrhoea), and the specialist has referred me for a CT of abdo and pelvis - I will have this next friday.

Meanwhile it has been a beautiful early spring day today. I have been stuck in bed in horrific back of pelvis pain with assumed constipation and taking many stool softeners. I had reduced the stool softeners because of diarrhoea, which was a mistake. I have only just emerged from the confusion/fog I get with this, which seems to be a lack of magnesium/thiamine absorbtion or both. The last few days have been spent trying to prevent my SOOD from flaring.

Today I am grateful that I have that CT soon, grateful that the Specialist is willing to communicate by email, and grateful that he (finally) felt the scan was worthwhile doing. Hoping for less pain tomorrow and more sun. Taking each day as it comes at the moment.

 

[gotumtum]

Well, an interesting development.

I was desperate for some relief with the pelvis pain and thought the chiropractor might be worth a try (although I was sure it was completely digestive). I also saw something on here about Ankylosing Spondylitis and wanted to ask the chiro about it. I managed somehow to get an appointment for the same day with the chiropractor as there was a cancellation. This was a small miracle in itself.

She discovered that the front of my pelvis is significantly misaligned. And the si joints are pretty unhappy too. ( along with the usual 'neck holding stress' issue.) She did a small adjustment on each part of the pelvis as we will have to make changes in small steps.

It was a little surreal. I had to take the kids wth me as it was short notice, and I try and minimise the 'sick Mummy' stuff around them. She is covering for my normal chiro who is out on long term leave, and I had only seen this new one once before. But she is kind and listens. At the beginning I explained the situation while gingerly trying to sit down, and I asked about Ankylosing Spondylitis and she did the, 'um I don't think so, wrong age' ( i'm not in my 20's) etc But she said that pelvises are her specialty, and that not many chiros deal with the symphasis pubis, so it could work out quite well that she is covering.

Then as she checked my pelvis her ...voice... changed. The kids wanted to watch her 'straighten mummy out' so they were back in the room, she was trying to explain to me that this (symphasis pubis misalignment) was the worst she has ever seen. 'I don't think you understand' she repeated. 'This_is_the_worst_I_have_ever_seen'. - In a quiet voice so this kids didn't cotton on, whilst looking at me with 'intense serious dr face'. ( I may have had a small smile on my face) She seemed kind of blown away.

There is something wrong with a healthcare journey, when you are trying not to cry with happiness and relief while experiencing significant pain ( and doing labour breathing) while they are treating you, because something is the 'worst they have ever seen'. Because they have found part of the problem. And that means you are not crazy.

So anyway, she is interested to see the upcoming CT results and mentioned them multiple times so we will see.

And in the meantime, I still am in pain, but knowing part of the why makes all the difference.

 

[Jo-mom]

Have you ever been to a rheumatologist? You might want to see one. Thanks for sharing your experience with us.

 

[gotumtum]

So results are back from the CT. Digestive system appears fine. The CT report does not mention my skeletal system at all.
The Chiro looked at the CT and let me know that my pelvis is twisted, the symphasis pubis is misaligned as she diagnosed before, I have bone spurs on my pelvis near the symphasis pubis, and also on my spine and there is also a very obvious issue with the curve of the lower spine - more of an angle, than a nice curve.
It is weird to have a test confirm that something is not right.

Anyway, She reccommended an si belt in the interim to help keep the humpty dumpty situation together better, and help support but not take over from the muscles etc in the area. She believes that over the next few months adjustments will help.

I have the belt, and will continue seeing her as it does help a little, but I am also trying to arrange a referral to a rheumatologist. Am mentally preparing to 'advocate for myself' / fight for this referral. Could be complicated as the CT report does not mention any of the above issues. I am wary of relying on the chiro as I have been having my pelvis adjusted for the last 4/5 years and we don't seem to have made any lasting progress by the look of that scan. I have an appt to request referral on Tues.

Am now in daily pain. Attached to hot water bottle. I do try and go for a daily walk which does help a bit.
Does anyone know if ibuprofen or other anti inflammatories come in a patch form?