Please tell me if I am NUTS !!

[candy158]

by candy158
Blank
, 11 minutes ago
To: Please tell me I`m NOT nuts ??
Hi guys,
This is bit of a vent, and questions too.  I just got my colonography done  this week.  That in itself was horrible., but, on returning home today, my specialist called ( well their secretary) , and said `we have the results of your test,`  .... and everything was NORMAL !!  I said, `How can that be`she said `I don`t know, but it is, and you don`t need to come in for your appointment`..... now, most people would be thrilled with this phone call.   But, not me.  

I have been going through HELL with my bowels for over a year now.  Spent time in hospital and everything, only to be told that everything is Normal.  Well, you don`t go 10 times in a 5 hour period, and then have little to no stool, just pain and yellow mucous !!  They did some other tests as well awhile ago, and no parasites, or anything nasty that I might have picked up from Mexico or somewhere else that we went, but NO, that was fine too.

So, after this, I DON`T know what to do.  I was told a year or so ago, when I was having my abdominal pain, that after 5 months of testing everything was fine, and it was my MS, that was all it could be, then one doctor did one finala test, and found a 9cm, tumor on my ovary and I had surgery within a week.  

Now, do I have to go through this type of months of pain and engagement to the toilet, for them to say something.  ???

My question is `Do any of you have this type of problem, and finally been told that it IS MS ??
I don`t want to become complacent to this, and just learn to handle it, if something is really wrong?

I am so  not sure what to do now, I don`t trust Dr`s, needless to say, and yet we need them.

Please someone have a suggestion or answer for me, I really need some comforting words today ........thanks guys, !!!

Candy

[candy158]

thank you guys so much, and YES JJ I am going to give it a try.  I am not that much of a milk drinker , but I do put 2% or 1% milk in my tea and coffee.  I love to eat frozen yogurt though, and cheese.  So, I will give it a go, and see if it helps.

Bob, thanks for your support.  I will ask for the full test, but they say that I need a specialist to order it, and the gastroentrologist that I was seeing, doesn`t want to see me anymore, and it is silly, cause he only really ever saw me in the hospital last year, and he was the sub for he guy usually on call, so we went with him.  He has cancelled every appt. that we have had with him over the lst 8 minths.... and now yesterday, when the secretary called to saya the test was fine, and I said, it can`t be, I`m not fine.... and she said, well, it is what it is, and he doesn`t need to see you, then I asked her about my appt, the end of July that was already booked, and she said, Nope you don`t need that one either..... so, hubby is now seeing the GP and trying to get some answers for us, and then maybe we can start this process over again.  It was a horrible test, and yes it was the CT colonography and they took 4 pictures, after putting in 4 litres of CO2 gas, then a balloon to hold dthings open, and it was painful, and terrible not comfortable, and apparently, it was ok, but it does not go all the way up to the colon and I know that, but we have to go with what the Dr`s are willing to do.  So, now we wait, and use the facilities ALOT and lots of creams and such, and try to carry on.

It seems to keep me close to home though, and I am kinda afraid of that being an issue.  But, again, time will tell.

Lulu, thanks for your note the other day, things are better in that dept. and I think that the forum cleared up some of the issues.  But, I really appreciate your message, it meant alot.

thanks again, and we will keep in touch,
*HUGS* to all,
Candy

[supermum_ms]

I'm going to give you an alternative that is unrelated to MS but it will give you something to try and see if it helps any.

When my daughter was little her bowel issues began, its been an on going problem and she's 25 now so her experience may be of some help. What they suspected in the begining was that a small little section on her bowel didn't work and everything would back up until eventually her bowel was full causing cramping and bloating etc. I'll skip through her teen years of screaming and turning into a she monster lol i know it was really painful but i could of happily excluded the constipation or diarea part of parenting lol

Little brother comes a long and he's as healthy as a horse until after he's turned 3 and he turns into an allergy freakaziod so hes now throwing up, skin rashes and agro agro after he's had milk, so not even thinking about DD i changed our milk to lactose free. Funny think happened DD's bowel issues cleared up too, it took a few years for her to accept that something as silly as milk could be the cause of her bowel problems.

There's been years of (anacdotal) evidence that milk negatively affects her, she even had her (healthy) appendix taken out because the doubled over spasmic bowel cramps looked like her appendix was about to burst. She's worked out now that she can have 2 cups of coffee in a day using normal milk but not the 3rd and she can't do this more than a couple of days in a row or have more than this little bit of normal milk with out causing her self a heck of a lot of pain and unmentionable probs.

Lactose & Gluten caused bowel issues often go hand in hand so its worth trying one of the elimination diets for about a month to see if it makes any difference. If it is going to help you'll know by the second week, though i've heard some say they knew after a few days, I think its an individual thing but still worth sticking it out for a month. Sue Dengate has good starting points on her web site if your interested in giving this a go.

I look at it this way, it cant hurt and may be of some help, so worth the effort of having a try!

Cheers........JJ

[Lulu54]

Bob nailed this one - the colography is not as good of a test as the colonoscopy. I've heard recently that it should be left as an option onlhy for those people who can't tolerate the colonoscopy or prep for a specific medical reason.

You really want to have the full scope test performed to look for your problems.  If this gastroenterologist won't do it, then you need to move on and find another GI doc.  

good luck, Lulu

[COBOB]

By colonography, I'm guessing you mean virtual CT colonoscopy.  It could very well be normal when a Colonoscopy might not be.  CT scan can not see the same thing as endoscopy.  Virtual Colonoscopy may be fine for finding polyps and cancer, but may miss things like shedding of the intestinal lining (as in Crohn's Disease or ulcerative colitis.)  CT is usually only useful in evaluating Crohn's Disease of the the stomach and small bowl and ulcerative colitis of the small bowel.  Most of the time (I think it is > 70%) endoscopy shows the typical mucosal shedding.

When you complain of pain and mucus on deification, those are the two things that jump into my head.   During an endoscopy, biopsies can be taken to look for Giant Cells and other immune system byproducts that can help in the diagnosis.

Gross stuff but pretty important.  Your gut makes up a major portion of the bodies immune system.  I think I'd follow up with a gastroenterologist and look for a cause.  This could be anything from a regional enteritis, to a parasitic infection to an autoimmune issue.

Bob

[candy158]

Hi Meg, yes, I had a colonography on Tuesday, and it was horrible.  

Then they said it would be 1 week for the results, then they called in 2 days, and it was the gastroentrologist, ( they did not order the test, and have not seen me in a year since I was in the hospital with the same kinda thing) .....

I see my GP next week, so we will see where we go from there.  

But, I think 15 times in 4 hours is ALOT, and all that comes out is pain, and mucus.... ( gross I know, but it is what it is , right?) .....

Thanks for the support,
*HUGS* back at cha
Candy

[meg321]

first off...YOU ARE NOT NUTS !!

there is something wrong but finding out why is the tough part.  What specialist are you seeing for it ?  You didnt say...and it was a colonoscopy?

hang in there, so many of us are going thru a lot of different issues..I am sure someone will know more.

hugs, meg

[candy158]

Thanks Wobbly, I`m afraid that it is MS and that we have to live like this.  I have been doing lots more research, and just because we have ! colonography OK, doesn`t mean that it is, apparently.  I just don`t want to EVER do that again, but I feel that something is wrong, and I don`t know how to tell people about it.  

I`m also nervous about what happened with the abdomanal pain last year, and it was serious, I don`t want the same thing happening again,

I`m concerned, and think I have reason to be...... be so tired of them making me feel that I am NUTS and wanting something to be wrong...... grrrrrrrrrrrrrrrrr
!!

[Wobbly]

Hi Candy, I have been having problem like this for a few years and have been in the hospital with abdom pains... they kept me in the hospital for a few days and didn't test... came back Normal.  They told me to take more fiber?  I was going three times a day at least...sometimes every time I went to the bathroom I had to go.  (2)... you know..

I still get some pains once in awhile, but don't want to see anyone, cause I'm tired of hearing, everything is normal... so I'm putting it up to my diet or age?  

sorry can't help more.
wobbly