Constant pain for 3 months
Posted , 4 users are following.
I was at a sporting event (watching), when all of the sudden, I felt like 5 people were stabbing me, I couldn't sit, stand or lay to find any comfort. I called my mom to come pick me up (I am 15 and do not have my license yet). I got into the car and started screaming. I didn't know what was happening, but there was a sharp pain in the center of my abdomen. My mom wanted to take me to the ER right then, but I told her I wanted to wait and see if the pain went away. It didn't leave, but it did move it's way over to the right side of my abdomen, and I kept feeling extremely nauseous. A day later at 4 in the morning, I finally let my mom take me to the ER. The first ER doctor told me I had "textbook appendicitis" and all we would need was a CT scan and the surgeons would take it out as soon as possible. They gave me a CT and they saw a small appenicolith and enlarged lymph nodes, but... they decided to wait until the next morning to make the ultimate decision and run a few tests to see if things got worse. So, they admitted me into the hospital, and I stayed the night. The next morning, they didn't see anything strange in my labs, so they really had no reason to take it out. No fever, no weird blood cell counts, and they honestly didn't know what to do with me. So, again, they had me spend the night. The next morning, I was feeling a little better, and they told me that it could be a number of things; ovarian cyst, mesenteric adnitis, and a few other things. They said that if it was mesenteric adnitis, that it would go away in less than 2 weeks. That day they sent me home. The day after that, I had the same sharp pain in my lower right abdomen, and since then, it hasn't gone away. I would go to appointments with my pediatrician and she would ask if things had gotten better, and each time, my answer was no. Every morning, I wake up sick and lean over the toilet and gag for around 15 minutes, and I'm always in pain, but some days it's a lot worse than others, and around 4 times a week, I will have a massive amount of pain for a few hours straight, then it dies down. A few weeks ago I had my first appointment with a GI specialist where he told me that he wanted another CT scan, and brought up a few things he thought it could be (mesenteric adnitis being one of them). I then was confused, saying that the doctors in the ER had told us mesenteric adnitis would last 2 weeks at most, and it has been A LOT longer than 2 weeks. He then told me he has seen it last up to a year and a half, and that it was a possibility that I had it. A day or so after that appointment, I was having really bad extreme pain, and I thought it would die down in an hour or so, but it didn't. It had been 2 days of the extreme pain with no relief, when I told my mom I needed to go to the ER. I went. They preformed another CT scan, and this time found nothing wrong with the appendix, but still enlarged lymph nodes. It's been a few weeks since the ER visit, and since then I have taken a serious turn for the worse. I also had a colonoscopy (that I should be getting the results back any day from). My doctor who did it, said that he didn't think he saw anything, but he sent it in to the labs to get it looked at. If nothing is found in the scope, they told me I would be diagnosed with mesenteric adnitis. I don't know what to do, I can barley function at school and haven't been able to go to a full day in 2 weeks (since I got worse). Does anybody have any ideas on what this is?
0 likes, 15 replies
lilian05079 french-fries
Posted
Vitamin and mineral deficiency can cause severe stomach pain....such as potassium deficiency, niacin deficiency and B12..get your doc to check them.....best wishes....
french-fries lilian05079
Posted
lilian05079 french-fries
Posted
You could be causing your own pain by eating too much french fries... because if root vegetables are cooked at high temperature to make them crispy a chemical compound forms called acrylamide and there have been studies on mice that have shown that high levels of acrylamide (which you are probably taking in because you eat alot of french fries) can cause neurological damage and it is a carcinogen. It also happens to other root vegetabes that are cooked at high temperature such as sweet potatoes, beetroot, turnip, swede and parsnips once they have been fried crispy or dark brown. Eaten in moderation is fine.....hope this helps...best wishes..
sanya11314 french-fries
Posted
Hi french-fries,
Horrible to have so much pain!
It did sound like a typical appendicitis....the appendicolith can cause it, sometimes a coincidental finding with no symptoms. But it should be found in both imaging. ??
so maybe the first was an artefact (and overinterpretation) or the second one missed it (radiologists are humans only, too).
I would kindly (carefully) ask, if you had an appendicolith now or not.
also,
if you go for imaging again, maybe if possible ask for an MRI if available.
It has zero radiation and can be done again and again.
After two abdo CTs this should be considered even the imaging in CT has its advantages but didn't bring you any further, and new MRI machines are very good and the radiation dose is something to consider in teenagers for full repeat abdo scans within short time frames.
Imaging can be very wrong regarding appendix, an appendix making problems can look normal still and by annoyed showing it only to the microscopic work-up (histology after removal), those little worms,
BUT the white blood cells or CRP have to be elevated when reading through studies and statistics.
I guess, your white blood cell count AND CRP (inflammation parameters) were normal, hence the wait by them not indicating an ACUTE appendicitis. Which is good, on the other hand, one would love a certain diagnose, remove it, problem fixed, isn't it.
We had normal VitB12, B6, electrolytes, but low VitD. Having said though, being up to VitD normal now, taking weekly Vitamin B complex patches, too and Mg citrate (for bowel movements actually) has not eliminated the right sided continuous (15months now) often excrutiating pelvic cramping pain at all for us, but we did give it a try for sure.
You could also ask for a celiac screening I think, a simple blood test first.
It came on so suddenly. That is the odd thing.
Hang in there! All the best!!
Hope if it was mesenteric adnitis, that this virus or bacteria is soon successfully battled and gone for good!
PS:
Another thought: ovarian cysts btw can be seen in CT imaging. If they were big enough and otherwise look like little pearls, which is normal. Also cysts up to 3cm are considered normal.
Some have Mittelschmerz (we have), menstruation pain AND cyst rupture pain (because experiencing functional hemorrhagic luteal cysts all the time in 2-3cm size, rupturing around 1-3 months time), which can be controlled by birth control pill (we take it continuously not wanting this additional pain as well, it's a very different pain compared to abdo cramping pain, different location and feel).
All the best!
french-fries sanya11314
Posted
sanya11314 french-fries
Posted
You might want to read through this recent 17 year old experience here, even quite different from yours.
https://patient.info/forums/discuss/urgent-please-help-559642,
but it shows the huge area of 'abdo pain' possibilities.
We had months of medication trials for
abdominal migraine
to neuropathic pain with zero effect.
My girl is your age and was off school for half a year due to severe cramping and vomiting etc last year. After more than a year now and a lot of trial and errors and some findings (her connective tissue is unfortunately weak/bad, very rare complication with intestine 1:10000; will be unlikely for you),
she is getting to a point to participate in life for about 4 hours per day before collapsing into bed being not only tired but in pain. This is already a win for us even nothing compared to life beforhand, finally getting independent, enjoying hanging out with friends, school camps, circus, excursions, looking forward to work at a farm at 15 for free even since she loves animals....and then zoom, on came excrutiating abdo pain, tearing of skin, gastroparesis, chronic fatigue, migraines, hip labra tears/bursitis a half year after being stuck at home...)
At least reading this forum one knows: you are not alone.
And I find even that helpful.
Very frustrating are all these 'Dr Feelgood' advices and 'psychologist' sessions where they try to tell you
'don't let pain rule your life'
and I believe that to some point, but not when it is excrutiating.
There is pain, and there is pain.
We had to go through with these 'green' options as otherwise we were not 'compliant'.
Sometimes it actually feels better, to be told 'yes, that sucks' than 'no, just go on with your life, do what you like doing and distract yourself'
as if that was possible when pain is really bad and one can't even sleep without meds.
(only opoids help in our case, but can't be taken, so stay with higher dose of Amitryptiline, just in case you come accross this word)
How are you sleeping?
Today's imaging and blood/stool/urine tests are really good and can at least exclude very severe things, like if an appendix ruptured, that would be well visible or a huge cyst or tumor pressing onto something.
I find it a big peace of mind. Really. Scopes, biopsies, awesome.
Problem though are still the fine molecular based interactions, chemical reactions, or nerve pulses or oxygen supplies, that are not obviously due to huge or narrow blood vessels, or viri, which can cause huge havoc too invisible to imaging.
There are rare abdo pain reasons
from autoimmune diseases to porphyria,
from heriditary angioedema (easily checked with a C1esterase inhibitor blood test, but until you get a doc to do it, phew) to mast cell disorders.
But first things first:
appendix
lymphnodes
cysts
celiac
and then go from there.
Maybe a 'calprotectin' in stool test, which is cheap and a good screen for inflammation of the bowel.
(We also had immuno occult blood in stool test, which was positive, but colonoscopy was clear...., then test was negative....uagh.)
I wish you a speedy either finding of issue or recovery from issue!
You should not experience that pain.
I really wish you all the best, french-fries
(what a funny formum name. Do you like eating them? Since the stomach upset we only bake them, no more oil, but they are yummy too)
Take care! Take it easy!
You are very brave because all these scopes and tests are no fun either.
But you girls are old enough to know, what it is good for and probably rather have a look and exclusion than something overlooked, that could have been treated. Different to small children, who get accused of 'being sick' due to all those procedures suggesting to be really sick (we were accused of that as well until I said 'guys, my girl is not a toddler anymore and she spoke up too, that she rather has tests, feeling being taken seriously than ignored with Dr.Feelgood advices, that did not work either after months)
french-fries sanya11314
Posted
I am so sorry to hear about your daughter
This stuff is so hard. Thank you so much for taking time to respond to this, I really do appreciate it! Yeah, I do feel that it's easier hearing from people "Wow, I'm so sorry" and things like "That sucks" than hearing "Oh, that's a bummer, but it's okay! Just keep moving on!". It's been so hard sleeping, some nights I take melitonin when the pain is really bad and I just need to sleep for some releif. Other nights I lay awake in bed just trying to fall asleep and sometimes it takes hours. It's then extremley hard waking up and staying awake during the day, and that makes school very diffucult. French fries are my favorite food! I absolutley love them! I haven't had them recently because all of the oils probably won't help me at all, so I have been staying away from them.
sanya11314 french-fries
Posted
Yes, so frustrating.
(Good if Melatonin helps you as it is a natural, by us actually produced sleep help. We tried too)
One day you shall try oven baked 'fries' and when all is good enjoy a nice serve.
All the best!!!
If your reason is (really) found or getting better, would you mind letting us know please (as an idea). TA!
french-fries sanya11314
Posted
I just got the results from my scope back on Monday. They did not see anything, so now they are calling it mesenteric adenitis. This is extremley frustrating for me, becaus as I have read up on the condition, I have seen many stories where the doctors essentialy will call anything that is GI related that they can't figure out mesenteric adenitis. Lots of the stories I have heard lead to people finding out 2 years later that there was something big that was wrong, but the past doctors diagnosed their condition as mesenteric adenitis. Of course, I know that there are many cases of legitamate appendisitis, and that might be what I have, but we just want to make sure the diagnosis is legitamate. My mom and I have been talking and we are going to a sergon today to see if he will remove my appendix, so we can rule out chronic appendisidis. If the sergon won't remove it, we are going to go to a major childrens hospital in our state to get a second oppinion
sanya11314 french-fries
Posted
Hi French-Fries!
How are you today regarding pain?
Was the scope 'just' gastroscopy or a colonoscopy (or both)?
There is one thing though proven in two CTs (please correct me if I got it wrong): enlarged mesenteric lymphnodes.
But if your pain was just due to those lymphnodes and will resolve on its own and when, finally when, is unclear, isn't it or the question.
ALSO the question if you had a stone now in the appendix or not.
Is anyone looking at the pics again?
Can the surgeon?
I would really point this out.
It is well known, that obstruction of the appendix can cause appendicitis like pain without inflammation.
At least you can provide a longer and longer duration of your symptoms.
YES, good move to get a second opinion.
Don't forget to take your blood results, biopsy results with you, an exact list of your symptoms with dates.
We had to wait for 8 months before the appendix with normal white blood cell count and normal CRP was removed but during an ordered diagnostic laparoscopy as a 'side work' not the main work.
There is a risk with every operation and I understand the surgeon who said, that they could get in a hell lot of trouble if anything went wrong (forbid, but they have to think the worst) and the operation had no indication whatsover.
Since appendicitis like pain in one spot persited, that factor 'time' was the indication for a diagnostic laparoscopy in our case.
So be prepared to be told to maybe have to wait a few months more.
They would have never just gone for a straight appendectomy with these blood values and that is more or less worldwide the case, but since they did an exploration via surgery anyway, my plead was, to remove the appendix even if it looked oh so harmless since being in there anyway, biggest operation risk already in process, so why not, I don't have the belief of a 'lost appendix' since the cecum is much, much higher in lymphatic tissue than this tiny worm, that was in our case already changed into fibrous tissue, hardly lymphcells left.
Yes to a second and third opinion! Very good. Very draining, time consuming....but important to feel heard and confirmed or other options given, other tests would be good, too. For me your little 'stone' in appendix is the first step to confirm or rule out.
Get well soon!!!
sanya11314 french-fries
Posted
ncbi just has the best studies in my opinion. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4416293/
french-fries sanya11314
Posted
Well, yesterday the sergon agreed to take it out and my surgery is schedued for tomorrow morning at 9:00. They are going to do an exploritory surgery while they're there, to see if anything else is wrong. At this point, my family and I just think that ruling out the appendix is the best idea before we go get a second opinion
No, they did not find another appenical stone, but they did tell us that chronic appendisitis wouldn't show up on a CT probably anyways, but they will have it tested once they take it out.
sanya11314 french-fries
Posted
All the best!!!
french-fries sanya11314
Posted
Update- It has almost been 2 weeks since the surgery and a few days ago we got labwork back from the appendix itself, and it tested positive for appendisidis. After we found this out, our local radiologist looked at the same CT scan that had "only shown inflamed lymp nodes" and saw 2 appendicoliths, and that my appendix had been inflamed (again). That means that the pediatric radiologists had read my CT wrong, (Which ended up getting me a wrong diagnosis) and that was extremley frustrating after figuring it out, because that means I could have had my appendix out sooner, and wouldnt have had to suffer for as long
but, we figured it out and thats all that matters! Recovery has taken a lot longer than expected though, which scared the doctors at first, but after having a follow up yesterday, everything looks great! 
I havent felt (the same) pain since and am so grateful for all of the doctors who have helped me and my family! I'm also thankful for the support of everyone around me as I went through this (very difficult) chapter of my life!
sanya11314 french-fries
Posted
Thank you for the update!
That's so, so kind of you!
Good to hear you finally recover !
(my daughter was very sick vomiting bile after operation, no fun with anyway belly pain, pale like a chalk, and every little bump in the car or wheelchair hurt a lot for weeks, but eventually got there. It's worth it, if afterwards things turn to the better. Unfortunately for my girl, after all this, nothing better regarding pain.)
Now two stones in the appendix!....
YES, that's exactly the thing with radiologists,
they are humans, they make mistakes, they are under time pressure, and also something sometimes doesn't actually show up on imaging or not clear enough. (Often appendices are only microscopically inflammed, not macroscopically.)
That was the odd thing with the stone in appendix, one said yes, the other one no, .... it can't just disappear. And now: there are two.
If it wasn't so sad, one could laugh.
Am I happy, that this is clarified!
Radiologists also tend to only see 'big' things, the obvious double as big blown up appendix or cyst and so on.
I am so frustrated with that approach, too.
I hope the radiologist who diagnosed wrongly, get's informed as a learning feedback, very important. They will not be held responsible especially that now everything is good and not life threatened, but I think it is immensely important since feedback can improve their experience, their mind and quality for further imaging to come.
I always run when I got misdiagnosed, not for compensation, no, but for improvement of quality regarding imaging since docs take their word as the philosopher's stone.
Good though in your case was, that it was not breaking through after all this time and that you are NOW finally relieved of the pain.
How cool is that!!!
Yipee!
The operation wound itself (inside) will hurt for weeks, take it easy,
you have done so well and so happy that you found the culprit, that the surgeon was ok about operating despite the imaging results.
Interesting would be, may I kindly ask please, if your white blood cell count or CRP were elevated. Do you know by any chance please?
All the best and you can enjoy (oven
) baked fries again!
Isn't it amazing how we get brushed off and so on,
you and your lymphnodes....duhduh, of course they were bigger, poor things were working...because of the appendix.
All good!
So happy to hear!
Well done!
It's frightening and painful with all the tubes and iv, but if problem solved: awesome! You did it!