I may be sane

Ive recently discovered the root of much of the problem I am suffering is Crohens disease.
Since 11 years old (now 36) I have felt ill and been told it's everything from food intolerence to arthritis or totally in my head depending on the doctor.
Winters are worse for the last 5 or 6 winters I have been bed ridden.
This year was 5 months of total incapacitation and I decided to become a medical investigator to get to the root cause of it, as I have kids and basically they have no mum when I am very ill.
Afflictions this winter included horrendous headache and dizzyness on standing up which is a first constant sinus infections along with tracheitis also firsts an inability to swallow anything more bulky than pulped foods as it got stuck or hurt alot... my gall bladder then decided to also throw a hissy fit along with the usual unexplained joint swelling and pain in the hands back and hip and feet this time and usual bleeding sore backside!
To cut to the chase I was ill and have suffered most of the things I got in one foul swoop in some way or another until on top of all this I also had eye problems in my right eye which has never ever been a problem till now.
There are huge vessels across it which pulsated making my eye vibrate when I lie down and really dry and irritated.
I went to the doctor in feb after suffering so much I literally begged for help and was sent for finally for a colonoscopy.
The prep they gave me for it made me ill and I mean ill I couldn't actually complete the prep I was that ill and at the hospital was treated with total contempt as if I was being dramatic I was ill for days afterwards to.
They took biopsies and glared at me till I left the hospital.
I then waited three months before I had had enough of total silence and chased up the biopsies ...roughly a week after harrasing a medical secretary I got a letter saying that they biopsies showed inflammation of the terminal illium and that I needed another colonoscopy as crohens is suspected they have changed the prep ive to take and sound far more sympathetic finally.
At 11 years old I attended a kids hospital for joint and stomache probs I was told I ate to much and had writers cramp and was sent away.
Since then I have had nothing but doctors showing me lack of intrest when I try and explain how I am feeling.
Like my body has been invaded by something that hates me! Like I am physically angry at myself.
Since reading up on Crohens I cannot believe how many symptoms I show especially with my skin it's really really sensitive to any chemical I get a variety of sores and spots the mouth ulcers too Ive always had them...One thing I am intrested to know from others is does anyone get problems with the saliavary glands?
Mines swell up and down ususally just before or during a flare up I was tested for this when I was 16 and it showed inflammation with no answer how to control it.
Again kidney problems anyone have problems there?
Mines are very sensitive to things I eat and drink coke is the route of all evil for both kidnies and my stomache processed foods have to avoided again both for my tummy and my kidnies I get nausea can't pee or pee all the time.
I get constant uti's which can only be controled with a constant antibiotic investigations again showed inflammation with no reason for it.
All in all I now feel I can possibley start to get better and not worry so much about how ill I will be in the winter or if I eat something processed or rough and that finally I can have a conversation with a doctor who will not look at me as if I am completely mental!

hi Wooby.

omg, you've had to suffer all those years, and without a proper diagnosis! in this day and age i find that absolutely disgusting - it shouldn't happen, but so sadly we often hear time and time again that it does to some extent.

i can understand you feeling that spark of hope, now that things could be pointing towards Crohn's.. i know nobody actually wishes to get diagnosed with it, but when there's been so much suffering as you've had, it's a relief to get told that there is a name & reason for it all.

i hope, once all the testing is done and results back, you can get on some sort of treatment regime which will address all the issues you've had to cope with, and get you your quality of life back.

welcome to the forum!

Thanks guys!
Ive been no meds as of yet I was given an antispasmodic (buscopan) for my gut to counteract the pain from the gallbladder problems and take co-codamol for my joint problems an anitbiotic at night before bed to support my kidnies keeping infection at bay.
I used to take ibuprofen until the gut problems from it outweighed the benefit to my joints I really have been stuck in a no mans land for the last few years as regards treatment and cause of the problems.
And that is exactly the problem I have had finding the right person to talk to who knows what they are talking about and listens ...so far anyway.
I go for my next colonoscopy on the 29th my own doctor has only just relented on refering me for a endoscopy as well after again just about being in tears over my rapidly shrinking diet...which at the moment consists of ripe pears and rice puddings tentative amounts of rice and chicken ... eggs being the newest omission which I am really upset I can't eat now...alcohol fats seasonings and bulk are all causing problems for me at the moment and for many years processed and sugary foods have been off the menu as are carbonated drinks and caffine which all leave me ill... another thing that is quite new is if I over eat and by that I mean eat enough to fill my gut shortly after I feel cold and have to go to my bed accompanied with a sudden headache and strange taste in my mouth. So now the size of what I eat is important too.I have a rapidly shrinking diet with more bloating and pain. I really do feel for people like myself but that are less insistent and determined or less tuned into the overall effects of such stuff it must be very confusing and bewildering at times I know it has been for myself.
Ive been reading through a few of the forum's and for the first time in ages I feel like I am not insane especially regarding how varied the effects can actually be.

Oh wow, I am so sorry you have been suffering for all of these years. I hope you get the much needed treatment that you deserve.

Hi Wooby! Welcome to the forum! I'm sorry to hear that you had to go through so much before they could figure out what was going on with you. Sometimes you wonder just how much a Dr knows right? Hopefully now they can give you treatment & you'll begin to feel much better!

Hi Wooby~
I am sooo sorrry that you have been sick for sooo long with no true answers!! I myself started to have symptoms at the age of 12 i think?? I just turned 37 and my flares are pretty up and down.. But you... Oh my gosh you poor thing!! Even though you are feeling so sick you have to be a bit demanding with your doctor or find another one that will take all of this serious. This NOT ok on so many levels! I don't know if this will help but if you can try to write things down like you did on this site so when you see your doctor you can be very specific and on track. This is sometimes very helpful to me so I know what to do next and the doctors know I am expecting answers and direction on my treatment. DON'T let them make you feel crazy or give you whatever...looks you can tell them in a nice but very direct way that you are not only a patient you are customer who needs service.. I hope what I have said doesn't make things more overwellming for you I just feel sooo BAD that you have been treated or I guess untreated for sooo long.... Please take care of you

W00BY said:

One thing I am intrested to know from others is does anyone get problems with the saliavary glands?

Click to expand...

im really glad you asked this, cause i do maybe but im really not sure!
what is it that makes you think you have a problem with them?
for me, about mid way between my chin and the very back tip of my jawbone (under your ear, you know?), right in between, on my right side face i got a swollen bump about 6 months back when i was starting to flare BAD and it was also a sore bump. also my face has been swollen both cheeks for a really long time, enough that people mistake me for being on pred.
i got the swollen bump checked out, even an ultrasound done on my cheek to see if there was something there, but it was totally clear, and someone briefly said it might be a swollen salivary gland?? is that where yours get swollen too, in the area i described?
since then the bump has gotten better, still there a little, but the facial swelling is still the same, and i really dont understand it. docs ask me if im on the pred and it drives me crazy that it is that swollen when im NOT on the pred.
whew.
i would love to know if a similar thing is happening to you too. its not a huge problem for me, kinda the least of my worries atm, but definitly i want it figured out!

im sorry that youve had such a frusterating time with the drs and hospitals, thats awful! i hate it when they dont treat us with the respect that we deserve...hello we are paying customers!?
i hope that your determination in it really makes them turn their act around.
tell your docs everything thats going on and ask about meds and treatmnents, etc. you dont feel good and you deserve to get better, so demand answers! either that, or find a doc who will.
good luck

Yep absolutely!
I also get the set of glands under the jaw midway between your ears and chin are constantly swollen I can put my finger under my tongue and pop em out from under my jaw bone about the size of a grape usually very painful to touch... there is also a set in the neck that swell up regular too and I also get glands in the back of my neck swell the ones in the cheeks always go when I start to feel ill you can feel them if I open my mouth wide they make a squishing sensation and can be pushed about! The strangest thing to happen in my mouth during these flare ups is cramp under my tongue when I yawn. I know it sounds strange but it's a really good indication for me that my mouth is going to have problems ulcers, gland swelling etc... It is absolutley excruciating when it happens and there is no way to look cool hopping about in pain with your tongue hanging out your mouth but for me it has always been the most instant indicator of trouble ahead with my mouth...I think the problem is that salivary glands are dealt with as a dental issue ( they were in my case) so linking them to other on going health problems just doesn't happen.
I had mines investigated in my mid teens radioactive dye was injected into them then xrayed. During it they swelled to the size of a football and I am not kidding. The xrays came back showing inflammation and all they could offer to do was take them out which I obviously declined.
Every problem I have ever had kidnies, joints, nerves and now my eyes have all come under the banner of inflammation now making me wonder if they all can be linked to my gastric problems.

whoooaaaa!
omg i cant believe that we have the same thing! well im so glad theres one person out there lol, but yours sounds way worse than mine, so im sorry that you have it too.
mine dont get THAT swollen to the point of hurting that much and squishing noises.
omg. i hate that theres no way to get rid of it either! except take out your salivary glands....yeahhh thats just what i want lol.

what kind of problems do you have with your eyes? i get these bumps right where the colored part meets the white. its reddish whitish bump, and it hurts and kinda just feels like you have something in your eye. very annoying. then it will get all bloodshot starting from the bump. similar thing for you?
if so, they give you steroid eye drops that really clear it up within a day. it was always instant relief for me.
difficult part is that you have to go get your eye looked at every single time you need the drops again as they dont just pass out those drops easily. i used to get the inflammation every other week, so it was really a bother to get the medecine. but now i havent had it for quite a few months.

i defninitly think that it is all rel,ated to the intestinal inflammation. doctors seem to agree on that, there is some info about it too--crohns causeing problems in weird places like the eyes, nose, sinuses, etc.

Welcome to the forum Wooby. I am so glad to hear that you finally have doctors that are looking into your condition a bit more. I think many of us have been told or felt that it was "all in our head." I hope that you find some relief soon. I talk about my body the same way you do. That it is angry. Kinda like it is it's own entity with a mind of it's own. Made me laugh when you said your gall bladder had a hissy fit. Whenever I eat something that upsets my tummy I always tell my husband that it is angry.

Good luck. Let us know the results of your endoscopy and next colonoscopy.

Well i've been for my colonoscopy and they gave me a gastroscopy too
I am now just waiting on the results and hopefully I will now finally get to see a consultant.
I actually had two colonoscopies as the pages of my notes were stuck together and they failed to notice this until I was in recovery... the stuck page had details of biopsies to be taken so I was promptly whipped back in for another exam *sighs*
I had terrible spasms throughout... there was alot of inflammation at the terminal ileum again and the valve was very inflammed but everywhere else looked not too bad.
Since then ive been really ill as soon as I eat anything I feel cold dizzy and so instantly tired I have to go to bed. I did think this was all in my head until this friday ...it was my birthday and I went out for a meal.
Very quickly after it I started to feel odd and by the time I got to my car I felt like i was drunk.
I had great difficulty concentrating on driving home I was swerving about and had difficulty staying awake almost... when I got home I went straight to bed and slept for 15 hours. I have tried to describe this to doctors before it's almost like I am sedated. (Does anyone suffer from dizzyness and lethargy ever?)
Anyway my point is i doubt it's in my head now as driving would not have presented such a difficulty for me had it been.

aw wooby sorry to hear about all the hangups
i cant believe they had to do it twice!
at least they did it right away and you didnt have to prep again, yeah? now THAT wouldve been some serious offense.

hmm ive never had that sedated feeling like youre describing. was this your first time being put under? some people have a difficult time with anestesia and/or sedation....it doesnt leave their systems quite right and they can be feeling odd even days later. this happened to my grandfather recently, he spent DAYS in a strange, sleepy, quiet daze following a surgery--they were afraid he had brain damage or something--but then he popped out of it and was back to himself.
maybe it is something like this?
just thinking out loud.

well, i hope that you start to feel better adn that the scope will give some good information to your docs.
let us know

No... I wasn't put under...
The sensation I am talking about is after eating particularly if eat bulky stodgy foods or alot volume wise.
I am now wondering if it is part of the overall way a flare up exhibits itself with myself as ive just got progressively iller with all the probems I had during the winter...I now am in awful pain when I swallow food from just about the collar bone to the center of my chest it's even tender to touch my skin has several itching oozing rashes and my eye which as I said had never ever been a problem till recently has started up again pulsing and trembling with lovely red vessels all over it!
So... am off to whine at the doctor tomorrow...I also phoned the secretary for the consultant at the hosp who informed me that my results are with the consultant at the moment and she will decide how quickly I need to be seen and then contact me!
TUT!
Ive decided pestering may help my cause and will phone her again today cause I really am sick of sitting about with my odd eyeball and awful skin :yrolleyes:

I finally have a date to see the consultant
and only a month away woo hoo!
I also wanted to put something out there I have stumbled across as I know a few of you have had some kind of surgery or face it in future
I have studied up extensively on the temperature problems I am having after eating the most common opinion is of the blood flow rushing to the stomache from the extremeties leaving you feeling cold upon eating...however I found this syndrome called "dumping" which more fits what is happening to me and usually is as a result of surgery it can happen without there ever being surgery but it is rarer... it is basicaly when food is dumped from the stomache into the small intestine either too early or to late and causes a whole load of odd symptoms mines I reckon is early dumping as it is so soon after eating accompanied with dizzyness disorientation etc
Anyway I just thought the information may be of some use to someone out there.

Wooby I really hope the consultant will have some answers for you. It sounds like you have been suffering terribly, and you just shouldn't have to. If it is crohns i hope it is *finally* diagnosed for you so you can start getting treatment and getting better. I will be keeping my fingers crossed for you!

Moving forward slowly me thinks...
I got a letter from the hospital confirming while my colon looked okay in the last colonoscopy...there was active inflammation at the ileo-caecal valve and terminal ileum
sooooo Ive to contact my doctor and I will be prescribed something for this.
Not to long till my first appointment with the GI doc either woo hoo!
I am particulary keen to see the GI as I have terrible inflammation of the left shoulder joint at the moment much like my hip feels when it starts up very weak can't lift weight and sore to move ...rather depressing and at this time of year is not a good sign it usually is bothersome from october onwards right through winter.
Anyway I'll keep you posted on what meds I am prescribed and what the consultant says.

Asacol

I got a letter from my own doctor to pick up a prescription... as the hospital had wrote to her.
I have been given Asacol (mesalazine) 400mg three tablets twice daily.
Anyone taking this?
Does it help if you do?
I have checked it out online and it seems okay as far as I can tell...

It's Probably a number of issues.....

Hello Ms.

You caught my attention when you mentioned "sinus infections". Along with the Crohn's this has been the most demonstrably frustrating health issue to come to terms with for me. I've done enough research to learn how to control it without the "antibiotics" that doctors want to use as they are only temporary fixes and actually worsen the condition over time.

Chronic sinus infections are caused by fungus. Do a web search for AFS (Allergic Fungal Sinusitis). The pain is unbearable when out of control. It's like having a headache in your cheeks which will not abate; completely distracting and hard to focus.

The only way to get rid of it is 1) STOP EATING SUGARS and WHITE FLOUR PRODUCTS 2) Take anti fungal medicines or supplements like Pau de Arco, Caprylic Acid, and others for days until the pain starts to subside.

You must accept the fact that your diet is what has to be changed immediately. It sounds like your doctor has already explained this to you. If you continue to drink colas and caffeine, and eat sugar products, even drinks with sugar addititives, you are going to be in for a lot of physical pain.

It also sounds like you may have systemic candida, which is also fungus based. Sugar feeds fungus; any sugar, even starches such as rice, pasta, and others. The challenge is to SUBSTITUTE into an entirely new food menu with copious vegetables, meats, and carbohydrates which are allowable within the spectrum of your new diet. This is a lifelong program because it will ALWAYS come back once you go off of your diet.

little further forward

seen the doctor at the hospital... who was actually of no help at all other than to tell me what the letter already had
that I had active inflammation of the terminal ileum and the valve
and that he was refering me to a specialist in crohns and ulcerative colitis...
so waiting again...but... getting nearer to the person who can help me!
The tablets have given me some nausea but have improved my skin and my anal tearing strangely.