Serve undiagnosed abdominal pain

definatley feeling for you and your daughter !! i am only 16 years old , the pain has continued since having my appendix out which was done via nhs but as its a lenghty process with them ive ended up going onto private healthcare . I still have the same symptoms of appendixitis so the doctors keep saying 'if you hadnt already had them removed we'd think its that' , on opperation removing my appendix they found a cycst on my ovaries which was filled with blood and just monitered it , which ultra sounds then showed it had gone by itself as they commonly do . At my second opperation in feburary where they looked around my stomach my surgeon and i agreed to insert a coil , to prevent my periods so i didnt have any added pain , as my periods were very heavy and painful , so now we can rule out any ovulation or menstrual cycle playing a part to it . i dont normally feel better after going to the toilet as it can be painful . i see a chiropractor anyway and she commeneted that my pelvic has was misaligned on one of my visits and the doctors have commented on it being pelvic pain symdrone which is common in young women that have never touched based on that again . In my colonospy they ruled out chrons disease ... after i get my results from my biopsy if they come back clear they are planning on then looking down the route of ibs and food intolernces . The docotrs really dont want to do anything more regarding my cecum , as you said they are not 100% sure anymore and its a long challenging process . As ive finished school now recently ive been having a longer summer than most so im trying to get this sorted before i start college as i didnt have a fun yr11 in and out of hospital , scans , tests and opperations i missed over 2 months of school altogether which really isnt convenient ! (worried for results day) and i dont qualify for special consideration as its a 'long term illness' id be lucky to make to last 5 periods a day without having to withdraw myself to sleep as i was so exhasuted and drained , like your daughter i dont sleep well at all and yes havent done proper exercsise since prior to september last year , my pain is constant like your daughters and will peak once or twice a day . i am constantly in fetal position and cannot make it through most days without a  hot hot water bottle on me 24/7 . After being put on fibre gel , ibs tablets and another form of medication and anti depressents i felt like it was too much and wasnt working so i stopped these and began throwing up for a day straight , i was then put on paracetamol and codine but only problem is codine makes me very sleeping so wasnt useful for everday use . I have started using a tens machine on my stomach and do feel this is helping a little bit ! i have also found that my complexion has completely changed i use to have clear skin and now extremely spotty ... i dont know if this has occured in your daughter too ! ovbiously being a teen it makes you very self concious not to mention having to walk around hunched back with a hot water bottle in your hoddie , some days i have to resort to crutches for strength . i have also done food diaries with my mum but never stopped anything as i mostly always feel sickened by the thought , taste or smell of food and will be for a week week tops without eating and only being able to hold down water . 

OMG,

you two are quite in the same boat.

Just, that my daughter has quite a good appetite most of time now (sometimes not, March was horrible and lost weight)....and is sick of 'belly friendly' food, diets and teas since it comes up 'anyway' when it wants to.

Just very nauseous (she is confirmed chronic gastritis with bile reflux in gastroscopy) and if too bad, takes ondansetrone.

Did you try ondansetrone melting under your tounge for nausea?

It's just masking a symptom, but sometimes it's so good to get severness of symptoms a bit down even cause is not tackled.

(If you took other med, has to be cross checked for interaction.)

You managed to get to school for 5 periods? 

You are a hero!!! Pat yourself on your shoulder!

(Good that holidays are currently)

(My daughter is also embarrassed for the one hour at school- we are in Australia- that she barely manages and gags all the time being pale in her face, trying to avoid being hunched and holding belly -advice from physio and psycho (? in order to live with pain? yeah right)- as friends run up and ask 'what's up?' 

and....we have no nice diagnose/term to tell. So she feels as if she made it up or being treated as if it was all just in her head or attention seeking.

How do you let your friends know, what is up? 

What do we call this pain? 

She also withdraws herself at home from contact since she cannot keep up, can't go anywhere and feels 'boring' for her friends and anyway feels sick and tired, too exhausting. All these side issues that come with this condition are really heartbreaking to watch. 

Girls you shouldn't be in this situation....)

Same, during laparoscopy a blood filled ca 3cm cyst was found on right ovary and left (for gastroenterologist THE reason, .... rubbish), which has by now long gone and symptoms stayed.

.... [rolleyes]

As you had a second laparoscopy after appendectomy, that excludes that adhesions after surgery could have caused the pain.

Did they mention to have had a good look for (atypical appearance! you young girls do often not have the black/blue typical endometriosis) endometriosis during your lap? 

Could they access the cul-de-sac region to have a look for it?

(they didn't in my daughter's case and I am furious)

The 'coil', it stops having periods? (I thought even the hormonal coil still made you have periods, makes bleeding for heavy bleeders lighter, but does not neccessarily prevent cysts/ovulation? No idea or experience with coils. But good, anything that helps with painful and heavy menstruations.)

So far she is not breaking out more than usual as teenagehood can be a bit pimply anyway. She has a certain ascorbic acid = VitC facial wash (I think I cannot mention brand name here), that helps her quite well with her facial pimples. Her back skin suffers more. Then again it does not get the same attention.

What do we do with a 'pelvic pain syndrom' in order to treat symptoms?

Hm, yes, nice term and then?

Does the chiropracticer help you with certain exercises or treatment?

I have to say, now that you mention, that my daughter always had a bad posture, always a hunched back walking or especially sitting (nagging mum reminding to straighten it) when healthy and in every MRI now her hips are not aligned, she lies crooked.

You said the pain started after appendix removal, but there must have been a reason prior to remove it, I guess. Did you have appendicitis?

You had a second lap, so if a 'stump' of appendix was left and inflammed, would have been visible.

Like you, she has had appendicitis like pain (but no appendicitis).....

We are extremely happy that the appendix is out (during diagnostic laparoscopy) and cannot be the reason. It's still a peace of mind, if no stump was left.

We had also PIZITOFEN (anti migraine) and PROPRANOLOL (beta-blocker) medication trial for treating a possibility of abdominal migraine (due to headach as well).

It didn't help. Gave up after 4 weeks each. 

I have to search 'tens' machine now, what is this? 

Can you buy it for yourself or is it a treatment at chiro?

As to pain med: ibuprofen paracetamol do not help her. Paracetamol with codein only makes her tired but does not help her pain. Codein has a bad impact on guts. (constipation) So we should not take it anyway.

Only oxycodone (a narcotic) would help for 3 hours, but this has a big impact on gut function (and dependency). Hence after 10 tablets in 4 months do not take them alltogether anymore.

(her gastric emptying study: delayed, explains nausea, vomiting to some degree)

Please consider ondansetrone if it could help with a nausea/appetite symptom. (?) Pizitofen is also known to increase appetite.

We have done all food tests via elemination diets, breath tests and celiac is ruled out via 3 tests (antibody blood, biopsy and genetically) to no avail.

Also no small intestine overgrowth found.

We keep on taking probiotics on a daily basis anyway.

The small intestine though is still unlooked at (no capsule endoscopy)

Hope you have better luck finding something helpful via food malabsorbtion testing.

Maybe soon you will find your culprit and be able to tackle it!!!!!

We also had a urine porphyria test (since some versions can cause abdominal pain only), I asked for C1Esterase Inhibitor test to exclude heriditary angioedema, but was said not to be likely anyway due to duration of symptoms. Her ANA was positive, but dismissed as unspecific.

My daughter also struggles with temperature, not really fever, but often has 38C.

Wishing you all, all the best

and yes, please keep us posted!

As we will too if we find some success or even had no success with something.

ALL THE BEST!

oh bless her i can relate to that !! have to be so carfeul of what i eat as more unhealthy things can make me feel worse some days...

i have not tried ondansetrone but may have to look into it !! definalty .. thats all you can really try to do as ive accepted that i can fully get rid of that pain until a proper diagnoises so i can use the correct treatment .

when i was actually in school yes.. i did try very hard as its such an important year to. My school was very understanding and didnt mind if i needed to have a nap instead .

i feel for her its horrible as in school especially you dont want to draw attention to yourself as so many may interupt it as attention seeking thats why i just removewd myslef from the situation as we had a area you could go to that was still supervised . My friends are very understanding of it some more so than others and have been through it with me since it started , but some have gotten to the point they dont know what to say to me anymore so dont really mention it or try and do anything if im visably upset as they know there is nothing they can do ... so like your daughter i do spend most of my day in my room curled up just trying to sleep it all away , but do have days im extremely low and will not want to speak to anyone , i mainly dont go out as i dont have enough energy to do so as walking down my stairs alone takes it out of me so i dont want to be a fun ruiner for all my mobile friends .

yes so im my second laparoscopy they found that my stomach muscle was abit inflamed and infected so treated that and that my appendix stump was infected , secondly that did fine 3 spots of emdrometriosis which they burnt off in the lap. 

The coil is suppose to just lighten it but im many cases it does stop it all in all , you just have to wait and see really even if it doesnt stop completely blood is literally minimal ..  so after 3 months of having it put in i stopped bleeding all together which was a result as my laps ( or so they doctors directed it to ) messed up my cycle and i was bleeding weeks on and off or 24/7 for 2 weeks all very confusing but recently this week i have started bleeding again so just waiting to see how long it lasts .

they never really said more about the pelvic pain symdrone to be honest was a one of mention ... how ever if you see a chiropracter as i beleive in MY OPINION they are abit harder than physio , im assuming they are the same in austrailia as in the uk they feel pressure points and crunch and crack you in different places , mine spotted my missalgined pelvis and was able to realign it for me and havent had a problem since ... it sounds more painful than it is !! your daughter would be fine i can almost gaurentee the pain shes in now is worse and it does make you feel better after just need to drink loads of water . They can offer different ways of treatment and can almost tell from painpoints on the head of your head where they need to focus on , i'd highly recommend it . 

so yes sorry i wasnt very clear i had appendixcictis and then was rushed to a&e had the emergency opperations but the symptons stuck with me since , some gettting worse , some getting abit better .

A TENS machine is typically used in pregancies but you can buy hand held devices online or in pharmacies , i got mine off amazon and was a 'lloyds pharmacy' one you have gel pad's which you stick to the problem area so for me its right lower side and under belly button and lower , you slowly increase intensity from zero and can control how intense it gets and it sends electric shocks/impules which numbs the area (downside is you are recommened to only do 30 mins max a day ) the whole point of one isto 'block the bodys pain signals which are normally transmitted from damage area, the tens machine interupts these and secondly it stimulates the bodys production of endorphins - its own natural painkiller '

ill definatley consider and research it yes thank you !

im open to the food test's but i dont think it is related as i dont have to eat or have eaten to begin the pain its constant ....

i beleive they looked at small intestine in colonopscy but didnt see anything , when you have a colonoscpy you have to prep your stomach day before by only drinking this stuff but it takes it out of you .. i lost 5 kilos in a day and my surgeon says as its classed as a reset of the stomach sometimes that sorts it out but so far it hasnt ... mhhhh

i also struggle with tempreture sometimes dont often but twice a week or soo ... 

all they best to you and you daughter and i hope you get somewhere soon as i would hate for her to have to carry on with it in older years of school as i have , i know my mum is emtionally struglling alot .

ill keep you both posted and yes please keep me posted to .

all the best x

Thank you so much!

Ah, yes, a lot is clearer and I am sorry, that they did not laser the endometriosis in the first lap and left an appendix stump....

if only everything was better by now after second lap.....

I wonder if you will be trialed for neuropathic pain treatment, too.

It hasn't done much for us, but you had pain that can be traced back to real physical issues and might have upset a lot.

We will try a physio, who does pilates and has experience with pelvic pain patients to be very, very careful. She needs to build up her belly/back muscles since her hypermobile ligaments throughout her body (as was just confirmed. Can you put your thumb backwards onto your underarm?)

are not supporting anything in pelvis and belly either.

(Her transverse colon is prolapsed, it was not mentioned in report, I saw it and now with some ligament tests its getting clearer, all could be physically at least an additional factor as well)

From there ask a chiro, who is experienced, to look at her pelvis once her muscles are a bit stronger, otherwise it will not hold anyway. Thank you for this idea!!

Thank you so much!

She had a gastro- and colonoscopy btw (nothing explaining pain).

Via those two scopes they cannot reach the whole small intestine,

only the start and end of it (the end reached via colonoscopy and is by statistic the most common area for Crohn's disease, but it is not the only area), not the long part in the middle of small intestine.

So the small intestine is not looked at in any endoscopy, except capsule camera can look at the surface directly of all the intestine.

Wishing you all all the best!!!!!

Hope ondansetrone will give you some relief for nausea at least.

Take good care!!!!

Ugh, my brain, just to clarify a minor side note:

I borrowed my daughter's face wash today,

it has salicylic acid in it

(my skin care has ascorbic acid-vitC in it).

It's a real pain isnt it !! its just the not knowing of what it is makes it harder to cope with .... they've already told me they reckon its nothing to do with my nerves but who knows....