Newbie and Need Help!

[ZooMa]

Hi Everyone, I really need some help from people who know what I'm dealing with!! I have so much information I want to share- I don't know where to start...
I have been the sickest I have ever been since Xmas 2011. Suspected colitis flare- I've had them for years and have always been able to pull out of them (by eating potatoes/yogurt/rice only for a few days). I didn't have a Dr up here (moved here 7 yrs ago my old GI is 160 miles away-he had suspected colitis) So mid-Feb rolls around and I am so sick- watery D, knife pain starting at 6 am- left me going to the bathroom and curled up usually from 6am to 12-1pm EVERY DAY. I started to get real wobbly and depressed. I couldnt stand without support, I was really weak and shaky. Made an appointment with a new GP and it's not for 5 more weeks!! So I asked my DH to bring me some Boost. He brought Boost with fiber (bad bad-gas, pain. cramping). Drank them anyway then I started drinking these meal replacement shakes that I feel literally saved my life- definitely kept me out of the hospital- because that's where I should've been! I got my strength back. Gained my weight back. Get in to see the GP and he sends me to a GI. SIX more weeks until this appointment!! I also have asked this GP guy to get my medical records up here- we have a family history of IBD and my Mother is dead and so is my grandmother (colon cancer)
Did I mention I live in the boonies??!! I'm also travelling 30-40 miles each way to see these Dr's and to the hospital. That's fun when you have watery D let me tell you! :P
So I get in to see her and ask if they have my medical records and she says no not yet- I try to tell her my family history- and my history and she up and leaves and sends the nurse in to finish with me. -I take note of this.
Wow- the next nightmare- I will save for another post because I had the colonoscopy from hell as far as admitting- it was a freaking fiasco!
So, I wake up from my colonoscopy and someone tells me they suspected Celiac, In my head, I'm like no way....the one thing i can eat is saltine crackers- but then my head says- but you're not better...
So next I get home and start looking into this celiac thing. WOW- I have NO DOUBT- I have had this my whole life....so did my mom...so did my grandma- Looking at my medical history It's ALL THERE.
I was a preemie (2lbs 3oz-1964 they didnt expect me to make it) I was told they had to have special formula for me. I have had a rash/allergies on me somewhere my whole life. I had 2 "rotten" baby teeth. I had extreme leg bone pains my whole childhood and they adults would say- that sounds like rickets- she can't have rickets...SHE HAD RICKETS!! :( I had my tonsils removed. I used to miss the bus all the time in the morning because I was on the potty. In 7th and 8th grade I had extreme dermatitis and exzema- all over my body-especially inside knees and elbows. I had been allergy tested at age 4 and supposedly was allergic to a bunch of things that I knew didn't make me sick. So I was punished repeatedly for "eating chocolate" --so let's add the stress and anxiety to my life since about then. In 11th grade I got extremely sick again-under a lot of stress...I had bronchitis, eye infections, sinus infection, ear infection and laryngitis all in a 3-4 month span. They tested me for mono and EBV. Eventually I got better. Suffered from extreme menstrual pain 3 out of 4 weeks a month- also D and cramping. Finally I had a GYN who listened to me when I told him I was in pain every month. He did a laproscopy and d/c and I never stopped bleeding after that. He removed my uterus and said that it "looked like swiss cheese" THIS has always bothered me- WHY??!! That sounds like an auto-immune response to me- like my body is attacking it- SO WHY??!!
Huge amount of stress in my life at the cookie store I was trying to manage- with idiot employees. I crashed again. GYN sent me to a GI he suspected colitis. Did a sig scope in the office and didnt see anything. He put me on some meds to control-nausea and D and some nexium. Having body aches and pains. GYN now sends me to a Reum specialist where I am xrayed all over and examined. I don't recall any blood work being done in that office. Meanwhile- I go to a new chiropractor. He tells me I have degeneration of a 60 yr old (i'm abt 40 at this point) in my lower back- have I ever been in an accident? NO.
So now back to the colonoscopy. I wake up and she tells me this info-suspect celiac. THEY TOLD ME TO GO HOME AND EAT CRACKERS AND TOAST!!!!! grrrrr!! Say okay- let's see then. I cut out the gluten...in 48 hours I had normal BM!! WOW- okay that speaks volumes- gonna stick with it.
Since my colonscopy- WHICH is supposed to be painless?? I HAVE BEEN IN PAIN!! 21 days! I told the Dr AND her nurse when I was there on friday. THEY IGNORED ME!!> I just want to add that I have been on pain meds maybe 8 times in my life- I am the last person to want drugs, I like to take the natural route if I can-my Mom was a walking pharmacy and I refuse to go there.
So I get home and look at the area and my lower left pelvic and that area is clearly swollen, hubby agrees. DAMMIT!! NOW WHAT!!??
I have to get the endoscope biopsies tomorrow! Do I ask to speak to another Dr or maybe a patient advocate at the hospital?
I want this on my file that I have had pain since the last surgery--in case something happens!
Oh and on top of that- I had been gluten-free for 20 days and now I had to eat a cookie (she didnt tell me to do that either!) so that I get a positive read. Should I eat another cookie today? (or can I just lick it- it makes me sick :( - but I want my test results to be correct!) When I are the cookie on friday? Within THREE MINUTES- i was having a reaction. I was shaking in THREE MINUTES!! Then in 5 minutes the loud gurgling started....you all know what happens next!
Also- the GI Dr Tells Me-grr- I am hesitant to label you Celiac because "it is a difficult lifestyle" OMFG!!!! ARE YOU KIDDING ME??!!
Like my body destroying itself isnt more difficult!!?? So I tell the nurse I went gluten-free. She says oh one of my friends is on that fad diet. SAY WHAT? You mean to tell me...1 in 133 people have this- 97% undiagnosed...and NONE of your patients are on gluten free???? CAN'T WRAP MY HEAD AROUND THAT ONE!! She did diagnose me with LC per the colonoscopy results.
Also forgot to add- NEITHER of these Dr's have taken a drop of blood to test. All I did was a stool test. Shouldn't they be looking at my blood??
...so that's my crazy introduction- i know it's all over the place there's just so much more info I am leaving out...
It's really nice to be with people who I know understand. Thanks for reading. xxoo
next post- will be Mom's history...she was a mess. poor lady :( i am having a real hard time with that. AND THE FRIGGING DR TOLD ME TO CALM DOWN WHEN I TRIED TO TELL HER. FML. I don't know what to do or where to turn.
~Andi

[ZooMa]

My poor Mom was sick my whole life. She was always a skinny little thing, had trouble with her weight-was labeled anorexic at one point. She had 2 premies and a miscarriage. She was given a hystorectomy after my sister was born at age 25. She had para-thyroid disease. She had to have her stomach removed at age 29 because it was "ulcerated". I remember numerous surgeries- they gave her a goat's stomach but ended up making her a pouch I believe. She also had colitis & crohn's. Allergies/rashes. She had kidney stones for as long as I can remember. She had back and bone problems- had to have multiple fusions on her neck and back. Her teeth were breaking- she eventually got dentures. She got breast cancer and beat it. At age 64 her little heart gave out. She just didn't wake up one day.
She has a Twin- but I want to post about their Mom first.
My gma was always cranky and ornery. She had thyroid issue, fibroids and had to have her gall bladder removed. She would always say she hurt and was tired. They found a tumor in her intestines- colon cancer. She had surgery and flourished afterwards.
She looked and felt better than she had her whole life- she's been on a liquid and soft diet for those months. Cancer came back and it killed her. I read that undetected Celiac leads to colon cancer!
My Aunt (mom's twin) We are going through many of the same issues at the same time-right now. She has MC also!! She has rashes and edema for a couple of years now. She has also beaten breast cancer. She has trouble with weight gain and bloating and watery D daily as well. I am working on getting her tested for Celiac as well. Her new GP told her he didn't think she had it. I read if you have MC you should be tested for celiac--trying to get her to get tested!!!
Also- My Mom, Aunt and I have all had to have hystorectomies by the age of 40- red flag there!!
I truly believe we all have this. Does anyone else think so? TIA
~Andi

[mzh]

What a nightmare! Maybe the pain will go away if you stay gluten-free. But you might have other allergies like, milk, eggs , and soy. Those are the basics you can have tested by Enterolab. They do more but that adds to the cost.

One thing is for sure; don't eat wheat crackers. Happily, there are now plenty of G-F crackers and foods that you *can* eat; it's really not a difficult life style. Sorry your medical care has been abysmal but we can help you. You will learn plenty just by going through the forum discussions and we'll help you when you post questions too.

One thing is for sure. You don't have to get tested for celiac; just go gluten-free on your own. Many of us are gluten-sensitive, not celiac, but if we touch wheat we get sick anyway. Don't touch the stuff and see what happens.

Oh yeah - welcome to the forum!

[ZooMa]

Thank You for the welcome! :) Yeah, the wheat is a definite NO-NO!! Since the beginning of the year, I have cut out alcohol, I quit smoking (4-6 a day 27 yrs). I gave up caffeine 7 yrs ago- it's also A NO-NO.
After my colonscopy I went GF. Within 48 hrs I had normal BM's and have had them ever since. Unless I eat gluten- re: the cookie I made myself eat. I am so convinced that it's the gluten that I bought all of the rice flours and the Zojirushi to make our own breads. I have been slowly replacing my cookware, containers, pots, cutting boards, ect. It's not that HARD> Being SICK is hard!
As far as the soy and dairy. I mentioned a meal replacement shake that saved me. I don't want to name products here in case it's against guidelines- but it is the best stuff ever!! I do shout it from the rooftops- it really, really saved me. I was drinking a quart of 2% milk a day mixed with these shakes that contains both soys and all of the nutrients I needed to get my strength back.
It comes in a powder and I blend up a blender full a day and fill my blender ball bottles and pop them in the fridge. I was so malnourished- I could barely stand on my own- and I am back to close to normal. Except for the pain I have in lower left since my colonscopy. Still a possibility though, I am sure. Had crazy "allergy" crap my whole life- wth knows??
I'd like to get some of the lab tests done- problem is I have no income. I'd have to liquidate stock to be able to do that...something that I need to discuss with DH. He's not around much.
Meanwhile tomorrow they are doing the endoscopy to check for celiac. My 2nd test where they are knocking me out and taking flesh when I still think my blood should have been looked at by now! I am positive deficiencies willl show up there.
It's exhausting policing this- :( I do not trust these people!
Going to try to pull up my nightmare colonoscopy post I had posted after on FB and will copy/post it here... xxoo thanks again!

[ZooMa]

My experience at the hospital the other day...names have been changed to protect the innocent...!!
first of all- the thing that is not their fault is that mcXXXXX has taken over mid-mi hosp as of January and they have nothing but problems with their new computer system.
so Tuesday after the home phone being out and me covering my butt getting my tracfone number to them (gi's office)...when i spoke to girl Monday to give my cell number- she says she has my ph call apt down for 1:30. I HAVE A CARBON-YELLOW+ they have the original- it says 12 freaking 30 on it.
so tues- 12:10 i go offline (i live rural-dial-up only here) and wait for the phone to ring- by 2pm i am pissed (also dealing with att right?another long story!!) so i call- she apologizes and says sorry she has had a hard time getting me to come up in the system. so she still can't - gets my birthdate and says she will call me back. (chick also had probs when i went for my ekg the week before-same hosp) so half hour later she calls and i spend 40 minutes with her on the phone answering questions. OH- and I have answered ALL of these questions twice already on paper- in GP dr office and in GI office!!
so i get to hosp and admitting tells me she had the hardest time finding me in system. she gives me my wristband- it says (both my last names together) no hyphen. no biggie they don't always let you hyphenate. so they call me back and nice nurse lady cant find me in the computer-fml i only moved 80 feet from the last lady and i am lost again. she takes my blood pressure and ask if i on high bp med, i say no i dont have hbp- i am stressed btwn this fiasco and screaming at att all morning. so anesthia dr comes and says just relax i'll start your iv and you'll feel better. so then they move me to a bed- and at least 2 other people come to start my iv- who started her iv?? blah blah. GOOD THING I KNOW! FML!!! new nurse comes and starts on the computer. asking me when i last drank and i said i have to pee though and she looks at my iv and says no wonder he has that all the way open and it just dumped 10 oz of fluid into you already. (versed) so then she cant find all my info on the computer- from the pre screening 40 minute phone call. so we have to do that all over again!! it was 1:45 by the time they took me! next thing i know they're waking me up and someone tells me they suspect celiac and not going to talk to me see me in 20 days no greasy or spicy food and go home and eat broth toast and crackers. CELIAC AND TOAST AND CRACKERS IN THE SAME SENTENCE!! i dont even remember getting dressed. so then i get to come home and deal with att again! and that's another whole bunch of freaking incompetent IDIOTS!! i'm ready for a padded room now. as long as i can have it gluten free. lol

~that's my story and I'm sticking to it ;)
Also- had my BP ck at the Dr on Fri. Perfect- no HBP. (yay! something good)

[tex]

Hi Andi,

After reading your history, all I can say is that you really should give some serious thought to writing a book about your experiences with the medical industry. If there were a global competition for the most incompetent group of medical professionals at a single institution, the group you have described would almost surely walk away with all of the top awards. They are an almost perfect example of how not to run a clinic or hospital. Did you happen to notice if any of them had each of their shoes on the correct foot (that is, the right shoe on the right foot)?

My guess is that the reason they never can find your account in the computer system is because the system won't accept the way that your name is being entered, but the database program they're using sucks, so it doesn't display an error message, so no one ever knows that it's not being accepted/filed correctly. But it could be due to various other problems with the data entry that any 8-year old could spot and correct instantly.

Anyway, to get to more important items, here are my first impressions: I'm not a doctor, but it doesn't take a rocket scientist to recognize that at least everyone on your mother's side of the family (for whom you listed a history) clearly has celiac disease, (including yourself), and the lifelong damage caused by untreated gluten-sensitivity has lead to many other autoimmune issues.

I had many of the early-life markers that you mentioned (skin problems, allergies, tooth enamel issues,etc.), but other than prior problems with C, my GI issues didn't begin until I was in my 50's. I've never been diagnosed (celiac disease and gluten sensitivity just aren't on the radar for most doctors, so my doctors never tested me), but I'm almost positive that I'm a celiac, and I have the neurological damage to prove it. By the time my GI symptoms began, I had already apparently developed MC, (because I had too many food sensitivities for a plain old everyday celiac. ). The point is, looking back, the markers along the way were there, if anyone had ever bothered to notice (but of course, no one noticed, and back then, I didn't know the difference, either).

For thousands of years, gluten sensitivity has been treated as sort of a "pothole in the road" by the medical community. It's not considered to be a life-threatening disease, and the treatment doesn't require a prescription, so rather than to fix the pothole, most doctors have been conditioned to just ignore it and drive around it.

The lower back issues may be due to ankylosing spondylitis, which sometimes develops as a side effect of IBDs/gluten-sensitivity.

The residual pain that you experienced following the colonoscopy may be due to a tear in the mucosa of your colon caused by a combination of the passage of the scope tube and overinflation (the colon is usually inflated with air pressure during the exam, to make the entire surface easier to see with the scope). The tear is usually in the form of a longitudinal split, but as far as I'm aware, it rarely goes deeper than the submucosal layer. Unfortunately, this is not a rare occurrence, but most doctors tend to downplay it, since they don't want the patient to know that something they did during the procedure caused damage. Usually, those splits heal after a few days to a week or so (depending on size and circumstances), but if they become infected, complications can result. Occasionally, the colon is perforated during the exam, but when that happens, symptoms usually become very serious very quickly, and emergency surgery is required to repair the damage, in order to save the patient's life. Research shows that this happens more often than most GI docs will typically admit (in 3 to 6% of cases), and the problem is much worse at some hospitals than at others. I'm not aware of any "official" statistics on the percentages of colonoscopy procedures that result in splits, but I would guess that it probably occurs in roughly 10 to 20% of procedures, on the average. In most cases, the splits are very minor, and the patient will not even be aware of them, because they don't cause any discomfort or other symptoms.

Welcome aboard, and please feel free to ask anything.

Tex

[ZooMa]

Thanks again. It feels like such a relief to have validation- that I'm not CRAZY!! I have huge anxiety- always have...can't wait for that part to go away!! I told the GI Dr. I have always got sick when overburdened with stress. She says NO. I said YES-nodding my head and looking into her eyes!!
She is not listening to me. But she is also of western culture so I am TRYING to believe she is just "different". That she just wants to see the biologic tests. Fine, but, I hurt since the last procedure and that needs to be addressed.
I have shared your post with my DH, in case I need backup- but he has been with me for 17 years, he knows all ;)
We plan on going to the hospital early tomorrow and I want to speak with an advocate or another Dr to express my concerns with this painful area.
Tex, a split makes perfect sense. I have been telling my DH since it started hurting that it felt like she took a strip out of me- thinking it was the biopsied area that was hurting. I can actually see - a swollen strip, on top of- the whole side being inflamed. AND you know what has helped it? ICE. Icing it is the only thing that takes the pain away. I believe you are right and thank you so much for the information. I'm a little more than pissed to think that they were running late due to my admission and may have rushed me through the procedure causing damage!!
They DO NOT want to know who I know as far as Med-Mal attorneys. My Sister was THE HEAD med-mal attny's secretary in MI for 6 years. Yeah- they know me-and if this hospital admin was smart- they'd be kissing ass right now...This attny is famous world wide.
I don't want to get dirty I just want help but all of this crap is majorly pissing me off...and ya don't mess with IRISH.
phew- that vent felt GOOD!! :)
Thanks you guys! It feels so good to be somewhere where people get it!! xxoo ~Andi

[brandy]

Hi Andi,

I wanted to welcome you and there is a wealth of info to be learned here! Brandy

Tex,

I was talking to one of my customers in Texas--Los Fresnos to be exact. He was out on medical leave and it turns out he had a routine colonoscopy on a Wednesday. He woke up Thursday in extreme pain. Friday he was having emergency surgery for hernia that came from the colonoscopy procedure most likely due to over-inflation. He was out of work for 10 weeks. He said the worst part about it wasn't losing 10 weeks of pay, wasn't dealing with the insurance companies, wasn't the fact that a mistake was made but was the totally uncaring attitude of the hernia surgeon. My customer had severe pain for weeks. Went in twice to talk with the surgeon to try to get a handle on the pain. The pain was so severe he couldn't walk around the house and needed assistance to get up and down from the toilet. My customer is still extremely angry over the 1 minute of time the surgeon gave him at each dr visit to try to get a handle on the pain and the total uncaring attitutude of the surgeon. Brandy

[tex]

Andi,

Please be aware that splits can sometimes happen even though the examining doctor may go to great pains to prevent it from happening. No doctor in his or her right mind would intentionally do anything to increase the risk, because they are well aware of the litigation risks. The lower left quadrant contains the sigmoid colon, which I would presume is the most likely place for splits to occur, since it is typically the region of the colon subject to the most stress during normal BMs, it contains the most curves, and this is where most diverticular pockets are likely to develop (if a patient has diverticulosis). A colonoscopy procedure is actually a somewhat risky procedure (that's why you have to sign a consent form beforehand). Stuff can happen, despite the best of intentions. And some of us have intestines that are more fragile than others. That's why it's not a good idea to agree to a routine colonoscopy exam just to satisfy some doctors curiosity, because he is writing a book, and needs a guinea pig. Unless it's necessary for diagnostic purposes, it's best to postpone such intrusive exams until there is a good reason for doing it.

Pain in that area could also be due to an attack of acute diverticulitis. Diverticulitis can be extremely painful. However, if the pain began immediately after the procedure, that's a smoking gun that points to the procedure.

Tex

[tex]

Brandy,

What a bummer. I don't blame him for being upset. I guess I've been lucky. The surgeons who have sliced around on me have always been more than willing to discuss the procedure and answer any questions that I had, both before and after the surgery. Anything less is inexcusable, IMO.

Tex

[ZooMa]

Tex, I wouldn't say the pain is extremely painful- or I would've sought ER help. It hurts and it's in a line/strip. The pain does tend to disappear sometimes, I will notice it is not bugging me at the moment but soon it flares again. It feels like a bee sting sometimes- throbbing and inflamed or it pinches sometimes. I had hoped it would be better by the time I went back to GI, (thought i was healing from the gluten damage- wth do i know?) but it hasn't so I wanted to tell her about it. I was ignored when I did and DH and I have both looked at it and that side is clearly more swollen than the other side-although it is clear both sides are inflamed...I am going to bring it up tomorrow. We are going early and will decide from there. Thank you all so much. It really helps to hear the voice of reason because I think I'm going crazy sometimes for sure!! --on top of that--did i mention i suffer from fog brain? wow- it's part of the disease and I'm not just a dizzy blonde?!!?! thanks- iamsostressssssed!! xxoo

[Leah]

OMG Andi. What a nightmare! Welcome to our family. It is so obvious that you have Celiac and should never touch gluten again. As for all the other foods that many of us can't handle because of the MC, you can wait on those. After I gave up Gluten and dairy, I felt so much better, but then soy started to bother me, so that's pretty much gone too now. Listen to your body - not your incompetent doctors. Right now, I suspect that one of my daughters has Celiac. Waiting for the tests. You should have your B-12 levels checked.

Good luck and keep us posted on your progress
Leah

[mzh]

Tex, I wouldn't say the pain is extremely painful- or I would've sought ER help. It hurts and it's in a line/strip. The pain does tend to disappear sometimes, I will notice it is not bugging me at the moment but soon it flares again. It feels like a bee sting sometimes- throbbing and inflamed or it pinches sometimes. I had hoped it would be better by the time I went back to GI, (thought i was healing from the gluten damage- wth do i know?) but it hasn't so I wanted to tell her about it. I was ignored when I did and DH and I have both looked at it and that side is clearly more swollen than the other side-although it is clear both sides are inflamed...I am going to bring it up tomorrow. We are going early and will decide from there. Thank you all so much. It really helps to hear the voice of reason because I think I'm going crazy sometimes for sure!! --on top of that--did i mention i suffer from fog brain? wow- it's part of the disease and I'm not just a dizzy blonde?!!?! thanks- iamsostressssssed!! xxoo

When I'm in a flare - I have minor diverticulosis too - I feel a searing pain in the lower left that sometimes goes towards the belly button. When the flare is over, so is the pain. This may not be your issue but we can hope it is.

[Deb]

Did you happen to notice if any of them had each of their shoes on the correct foot (that is, the right shoe on the right foot)?

Okay, so I had them on the right feet but they were different colors (in church, no less!). Brain fog???? :)

[tex]

Okay, so I had them on the right feet but they were different colors (in church, no less!). Brain fog???? :)

Probably.

Tex