OH MY God...Bless you......I wish Doctors could figure me out too....

Peace

Cherie

thanks.

are you having similar issues?   it took 10 yrs to get my issues resolved.  I am so glad i took that trip to the ER.  had i waited for my upcoming dr's appt, who knows what would have happened.  it's not a well know, acknowledged thing to have chronic appendicitis.  I am sure the reg gi would not have thought of it.

if you having similar issues with pains, get the vit d checked.  i am amazed at HOW many people have this.  esp if you don't live in a sunny place. 

Hi Annon,

My name is Kristin im a 44 yr. old single mom from Illinois.  Thats fantastic that you got your problem resolved, thats half the battle.    I to suspect i have fibromyalgia but have been brushed off by my regular doc for years.          What is it with this diagnosis?    My doc is a great guy in many ways, but i was hoping to maybe try that lyrica as its for Fibro. I believe.     Im also recovering from my third neck surgery  that i had two months ago.    Now the waiting comes again.  My first surgeon put the wrong size titanium plate in my neck so for eight yrs.  i suffered needlessly. I  have been in pain since 1992.   Ive always believed my suspected fibromyalgia (sp?)   started because of the stress from pain and it caused my body to send so many pain signals and become out of "whack" so to speak!     When i get up in the morning i feel like i have been hit by a semi truck every single day.     Im never ready to start day and am also on strong meds.    I have been on so many meds. since then and still am on, that i also have stomach pain.    My stomachache comes and goes and is also in the middle of my belly.      Like you Im vit. D deficient and my surgeon also has me on vit. C , a multi, and magnesium and calcium help Vit. D be absorbed.      Just thought id share with you a little of my story as it is similar in some ways  to yours.   Sorry this is so long....... Good Luck with everything=)

Kristin, thanks for the comment.    I hope that by balancing your vits you actually lose some of those pains.   I have only taking advil or motrin for my supposed fibro.   i was given an antidepressant drug once for it, but didn't take it.. i really don't like taking medicines, so i avoid them at all costs.   fibro is such a new illness and takes a lot to diaognose it.  basically because they do so many tests to out rule so many other illnesses with the same symptoms.. like arthritis, lupus, lyme disease, etc.  i have been tested for everything..  tumor in my pancreas, gall bladder... just everything.  lol.   

i think you are correct in that if you do have fibro, that it started when you suffered will all that stree and pain.  mine was thought to have been started after being in a car accident that hurt my back (not badly).    But, IMO, i don't think that is what i ever had.  i really think it's due to the vit d def.   and the older we get, the more harm being def in vit d can cause.. from what i have read.   but, like i said, my sister feels wonderful!  she's even joined curves recently and is able to do the classes!!!   :D

so.. i hope by taking the vit's you are helped and given some releif!   best of luch!!  :)

annon

  Thanks for your message  i so enjoy hearing about other peoples journeys because as my friend says  "We're all alike only different"  It kinda takes a couple min. to sink in (at least it did for me..ha!)  You know I recently heard that a very large number...(the number was astounding !)  are deficient in vit. D...have you heard about the virtues of taking calcium and magnesium wth Vit. D  my doc says it aids in the absorption..I know wat you mean  about taking meds....is not good  my liver has been overworked since i got hurt  It   was nice chatting with you  good luck and god bless

Hi, Annon, I saw your post on the merryprin blog. That's so amazing because I had chronic appendicitis for months before it became acute and required surgery. I kept being turned away until I was brought into emergency in a state of delerium and unable to hold anything down. I certainly wonder if my vitamin D deficiency had been found earlier that I might till have my appendix. Good for you for searching for answers in terms of the IBS and fibromyalgia. I'm so glad to hear that you and your sister got your vitamin D checked and that it's helping. Be sure to keep taking vitamin D after you stop the 50K pill.  My endocrinologist recommends 2,000-4,000 IU's per day for maintenance, depending on the person.  After another 4-8 weeks, get re-tested to make sure your level hasn't dropped, and keep doing this for awhile to make sure your levels remain in the normal range.  I just took a friend to my endocrinologist to get proper treatment for a severe vitamin D deficiency. Her doctor had had her on the 50K pill once a week for 6 weeks and dropped her down to 1,000 IU's per day.  She started with a blood level of 5 ng/ml, went up to 32 ng/ml, and, after 4 months on 1,000 IU's, upon my insistence to get re-tested, her level dropped to 22 ng/ml.   My endo now has her back on the 50K pill, wants her to get her level to 50-100 ng/ml, and wants her to take 4,000 IU's/day maintenance after she gets up to that level.  I highly recommend getting your and your sister's levels into this range as well.  Also, for those who wrote about calcium and magnesium, yes, you need to take the USDA of calcium through food or supplements so vitamin D can maximize getting calcium from the diet instead of the parathyroid glands having to get it from the bone.  And, magnesium, how I have not found yet, helps with vitamin D absorption.  Take care, and I hope you keep getting better!!!!!

larrisalle, thanks for your comments.

yes, i am scheduled to be checked again after taking the 50.  then will go on a daily and be checked monthly for.. however long.   my sister is being checked on a regular basis and feels great.

the appendicitus was a shock.  i literlly had these pains for years.  the surgeon was pretty amazed.  lol.  he said based on my symptoms and the way my appendiz looked when he removed it that i should have been much sicker.   well, my family is a medical mystery!  lol.   i am so glad i just decided to go to the ER.  had i just continued going back to my GI dr, who knows how much longer till they discovered the problem.

glad you are doing well, also.  :)

larrisalle, can i ask how long it took you to recover?

i have has very little pain.  they wanted to send me home hours after the surgery, but the surgeon said no.   i still have a little pinch of pain here (where the appendix was) or there (where one of the incisions was), but nothing more.  I was just wondering if that was normal.    every time i get a pinch of pain where the appendix was, i fear they didn't get it all.  

Hi, Annon, yes, it's really amazing when you find someone who has gone through this.  You feel (and the doctors who don't know what they are doing make you feel) incredibly alone.  About your appendicitis, when was your surgery?  In term of my recovery, it was pretty quick.  The surgery was at 3am.  I was back home by 3pm the next day.  It took about a week to be able to get around on my feet reasonably well and was able to go my classes.  It took two weeks to feel pretty stable on my feet.  But, I never quite had a good digestion after the surgery, and I had frequent, low grade nausea (these cleared up with the vitamin D).  i don't remember a pinch of pain like you're describing.  If you keep feeling it, I'd get it checked out, and keep tabs on your temperature to make sure it isn't rising, which would be one sign of infection.  Your doctor probably told you this, but also check that the area of the incision is not getting red/inflamed/swollen -- if it is definitely get it checked out, especially if there are any red streaks radiating away from the area (a doctor once told me that this is a sign of an infection that has spread into the bloodstream).  Ask your doctor if you can use hot compresses on the incision area.

A friend and I are starting a vitamin D support group.  Would you and/or your sister be interested in joining and sharing your story?  We're just getting started, but if you would like, please email me at larissalle@hotmail.com.  We are keeping everyone's stories anonymous.  I can let you know more offline about what we're hoping to accomplish. 

Larisalle, thanks again for the comments.  :)

well I guess I am probably right on track.  LOL.  I had my surgery about a week and a halg ago.  I really had like NO pain.   just a pinch or it here and there.  maybe pinch isn't a great word to use?!   But not bad at all.   I saw my doctor today and he said all seems fine.. although i may have a bladder infection!!  ugh.   I only have a complaint .. a question with my Dr.. re the pain by the Rt side where the appendix was.. apparently that takes about 6 wks to be fully healed.  so i guess all is well.  :)

Welll.. here is something weird..  I went to the ER around 10:45 sunday night..  the Dr came in at 3am to tell me i needed by appendix removed... i was in the OR by 3:30... i was home by around 3 the following day.  How weird is THAT??? :D

Ok.. thanks for the invite.. I'll let you know. :)

Whoah! Annon, I guess you'd call that a psychic appendix connection. Ho ho!! About the bladder infection, keep tabs on this, especially if no infection is ever found. Many of the vit D deficient people in my chronic pain class have bladder issues (and some recurring pain) even after correcting the deficiency. I'm now investigating guaifenesin for this. It comes from the bark of a type of tree and has been used for ages in cough medicine to loosen mucus. I learned recently that many people with chronic pain get pain relief from guaifenesin. Fibromyalgia patients, who all have very low vitamin D if they are lucky enough to get tested, have a problem with excessive and inappropriate calcium and phosphate retention in the tissues. When D is low, the body can't absorb much calcium and phosphorous no matter how much of these minerals are ingested (and magnesium, but that seems to be a different story). It seems that if you have low vit D, your body goes into survival mode and hordes away whatever calcium and phosphorous (in the form of phosphate) it can since it's not getting enough new supplies. Some calcium is normally retained by the kidneys, which is a temporary, normal storage place. But, with low vit D, calcium and phosphate get stored inappropriately in the tissues, such as muscle tissue. The tissues harden, and researchers are now learning that this is where a lot of the chronic pain comes from. The guaifenesin releases the inappropriate calcium and phosphates from the tissues and thereby reduces pain (with some amount of side effects as the stuff makes its way out of your body). You and your sister might want to look into this if you have any recurring pain or bladder issues after getting your D levels up and keeping them up. The main researcher involved in this is Dr. Paul St. Armand, an Assistant Clinical Professor of Medicine at Harbor-UCLA. I wish you a successful recovery, appendicitis and vit D!

I just realized i wrote chornix instead of chronic!  lol

I have had a bladder infections before.  Not too bad.  brobably about three total.  I do worry about the bladder though because my mother has bladder cancer.   And when I have had infections, they don't show in a urine test.  I know this dr, the surgeon, doesn't want to prescribe me anything unless I show a positive result in the urine test.. even though I told him they never show a positive result.   so I wil def. keep an eye on it! 

thanks for the well wishes and all the info.  it's much appreciated.  ;)

Ahhhh... Annon, if your bladder infections come back negative, I have been told over and over in my own case of this that this is not an infection.  It is increasingly clear that, since chronic pain patients tend to have this condition, it is highly likely that it was caused by the vitamin D deficiency.  I really think that you should check with your doctor, who seems to be quite good and open, about the guaifenesin to see if it will alleviate the bladder problems.  I am theorizing that the bladder problems are due to the build-up of calcium and phosphates from the vitamin D deficiency and which are typically found in abnormal amounts in fibromyalgia patients.  I am going to be starting guaifenesin in the next week, and I will keep you up to date in case it helps you.  For your doctor, or you, in case you didn't see this in one of my posts, the researcher for guaifenesin is Dr. R.P. St. Armand at UCLA. 

Oh, gosh, I'm so sorry about your mom's condition.  Definitely get her vit D level checked as the Bone and Cancer Foundation says that all cancer patients have low vit D and correcting it can help relieve the patients' pain.  There is research being done on vitamin D compounds for treating cancer.  You may want to do some searches on this in case there are any clinical trials that your mom might qualify for.  Best of luck to you all, and I hope we keep in touch.

read book by Dr. St. Amand What Your Doctor may not tell You About Fibromyalgia and then log on to their website where you will be help with their protocol and how to start getting better. they have a 24 hour chat message board on their webiste which hooks you up with 4 or 5 amazing assistants (as well as Claudia Merek who co-authored the book with Dr. St. Amand and travels across N. America lecturing to Doctors along with Dr. St. Amand) from Dr St. Amands office to give ongoing advice. It will change your life. Look up Dr. St. Amand's website and find out how to hook up with this 24 hour help board and read  as many daily questions and answers from the staff as possible, you can ask questions too. These people are amazing. You will read many posts fom women like you who have been compleltey recovered for years due to this doctors research. He has fibro as well by the way! It Will change your life

good luck 

I just had the same thing.   Retrocecal appendicitis - that's when the appendix is turned up behind the cecum (right large intestine).    It came and went for nearly a year.   Efforts to diagnose it turned up nothing except diverticula in the sigmoid colon.   Pain always ended up similar to appendicitis but never in the right spot, and it was all over.   Dr and I both thought I had diverticulitis.   Finally one day I developed the classic terrible pain in teh right spot.   I had a ruptured appendix that had abscessed and nearby parts of my abdomen were full of infected fluid.   Luckily this responded to antibiotics and surgery after only four days in hospital.  

Retrocecal appendicitis is hard to diagnose, it's routinely misdiagnosed, and it seems to be prone to this coming and going antic.   They think that mine actually ruptured and healed several times.  It did get treated with antibiotics each time, mind you.   I always had a high fever and sky high white blood count.   But without insurance it was never even imaged when I was sick.  ER doctors always said you're fine, go home.   Come and go appendicitis can be fine when it's not flaring up.  A CT scan when I was in a well phase found nothing.   A barium enema imaged only the first part of my appendix, which apparently was the only part that was not affected.  Teh rest was ragged and necrotic by the time it was removed. 

I really suspect that the notion that chronic appendicitis is rare is nothing mroe than "standard medical wisdom".   You know, like how often to get a mammogram.  

Most surgery for appendicitis is laparascopic nowadays - I was fine an hour after surgery.   Had to be in the hospital an extra day because I'd had a severe infection.   Actually went home sooner than I would have because doctor wouldn't let me have my asthma meds.   Two weeks later I just have a pinch where the appendix was too - wondering how long that is supposed to take to go away.   System taking a while to recover, which I'm told is normal.   I still have diarrhea and not quite back on a normal diet.   As to bladder infections, they're very common after any abdominal surgery because of routine catheteriziation.   You may not have been told they did that.  

Villandra, that's amazing.  I can't believe I have been finding people with this same problem.  I am glad you finally were able to have yours taken care of.   that's great.  it's been 7 wks for me.  I still get a small pinch where the appendix was.  but it's so much better!!!  

thanks for sharing your story.   I am thinking along the same lines as you.. this is not as rare as they think.