Need Hope :(

[tummy.troubles]

HI All,

I haven't posted on this forum in months...so I'll give a brief background of my situation.

I was diagnosed with IBS when I was 15, I am now 24. 2 years ago I had my gallbladder removed and since then my "IBS" has been worse. For awhile now my doctors have been urging me to get a colonoscopy because they think I might have crohn's. I didn't believe them until recently.

Before, my symptoms were manageable; if I ate something bad, I'd have 'the runs' and I'd just take some medicine and be ok. This is how it was all through college. Now I'm worse. My flare-ups are happening more often and the pain is worse; if it was IBS, the symptoms would've stabilized, according to the doctors.

I pretty much have horrible lower abdominal cramping, it's so bad that it radiates to my back and makes me sweat and shake. I can be constipated and then have painful diarrhea a few days later. I also feel sick pretty much every day (cramping in my upper abdominal area after breakfast) and almost always feel the need to go to the bathroom after eating...it's a vicious cycle. The strange thing is, I feel best in the evenings, but am always so gassy...I also noticed that when I get these bad flare ups, I get sores in my mouth! I have one right now and haven't been able to stop running to the bathroom all day .

So my symptoms do sound a lot like IBS, but the lower abdominal pain sounds like crohn's...I should also note that a few years ago a stool test revealed that there was a high white blood cell count in my stool...another thing that concerned the doctors.

So why haven't I gone to get tested for crohn's?? I am a total wimp. I am a wimpy girl. I am so afraid of the colonoscopy prep! So so scared--I've heard horrible stories. Strange as it may sound, I am also afraid of finding out (but I also know that if I keep putting this off, I could end up much worse). Crazy, but I actually want to have a baby too, and am afraid it'll affect the pregnancy.

I don't have much of a life because of this; I've stopped making plans with people because they just don't get it . People don't know what it's like to have your life revolve around a toilet and stomach pain.

Can anyone relate to this story? Did anyone feel this scared about doing the colonoscopy prep before being diagnosed with crohn's?

 

[mommy1st]

I would get the colonscopy, but when you do ask for the miralax prep it is by far the easiest prep to do. I hate the preps but this one was the best one hands down. If you want to get pregnant I would get your medical condition under control first, it will be better for your baby. Good luck and let us know what you decide to do.

 

[tummy.troubles]

Thanks

Do you know if the pill is any good?

 

[D Bergy]

I did not look forward to the Colonoscopy, but it was preferable to death by an unknown disease. I am much more frightened by being ill and not knowing the cause. And I am a person that normally does not go to the doctor unless I have absolutely no other alternative.

You can treat the condition after you have a solid diagnosis. The alternative is to live your life around being sick and watching yourself waste away. That is not the life most of us would choose, and yet that really is what you are headed for if you do nothing.

I really think that once you frame the alternatives in a realistic fashion, the Colonoscopy seems not much more than a nuisance. Most people do not have any problems when they have it done. It is one of those cases of where thinking about it is actually worse than the actual prep and procedure.

I know you can take control of the situation and do what you need to do. Just make your decision and forge ahead. You would be surprised what you can do when you make up your mind. You already had Gallbladder surgery, and that was a much more risky procedure than the Colonoscopy.


Good Luck

Dan

 

[kello82]

hey TT
like the others said, the test will be way worth it. it will allow the doctors to see exactly whats wrong, and then they can work towards making it better for you.
no one deserves to have their life revolve around a toilet! there are solutions out there that might make it different for you.
the prep is obnoxious and uncomfortable, but it is just one day. youve already dealt with so much. so many days of feeling crappy, so know that youre definitly strong enough to handle this.
good luck. ypu deserve to start feeling better

 

[MINI Cooper]

A little pain in the behind, for a peace of mind!
A colonoscopy is the way to go for sure.

 

[mommy1st]

A little pain in the behind, for a peace of mind!
A colonoscopy is the way to go for sure.

That sounds like it should be a bumper sticker!!!

 

[jamie2462]

colonoscopy

Hi

Well my situation was different then yours but I had no problems getting a scope done. When you are in so much pain down there anyways one more little thing that can get you on the right meds didnt bug me at all...mind you I was admitted into the hospital and knew I was to raw for any "prep". I got the drinkable prep - a full fricking bottle of stuff to drink...don't ask me what it was called now, but I am certain that you would be able to do it that way as well if you are having some undo anxiety about the process.

As far as pregnancy...I was not as concerned about having Crohn's and pregnancy once I began reading some of the materials around the topic. It will of course depend on your treatment like right now I wouldnt be trying to get pregnant but I am just coming out of a flare up and am on 3 different antibiotics plus 2 other pills that say specifically that there are chances of birth defects but when you aren't on those meds I would not be overly concerned aside from the normal "what ifs"and conversations with my doctor which of course I would seek out before looking into getting pregnant anyway.

Even on Remicade my girlfriend had her baby and she is a big beautiful bundle of joy that is healthier then my friend or myself, and she's just 2 now.

I wouldn't worry too much, but the longer you put off getting the testing done the worse the damage done to your intestines could be. I am currently waiting to see how much if any (Hope for none for me) surgery I will need to have done from going undiagnosed for so long. I can only hope that you will get in and get 'er done. :smile: Because your health isn't worth waiting on, and it takes long enough to get some test results back as it is.

GO GET THAT COLONOSCOPY DONE BABY!!!!!

 

[cheeky]

Caution Novel Length Reply

Can anyone relate to this story? Did anyone feel this scared about doing the colonoscopy prep before being diagnosed with crohn's?

hey i was also worried about doing the colonoscopy prep, but it wasn't as bad as i thought. i bought the colyte prep, and i admit, after a while i got sick of drinking it BUT, the taste wasn't as horrible as i expected... just make sure it's mixed/shaken very well and leave the prep in the fridge overnight (the taste isn't as strong when it is chilled longer and the powder is completely disolved)...

the taste is kind of a pineapple taste... i also bought gatorade and jello (but you're not allowed to buy red coloured flavours) and that helped me bare the taste as well (e.g. i would have a big gulp of gatorade immediately after the glass of colyte)... but i've also had colyte without anything else... just straight colyte all day...and it was ok.

then the actual colonoscopy day arrived.... i was VERY nervous! i was not only nervous but also self-conscious (not only about something going up my butt but with my luck i ended up having my period so although i had a tampon in, it was kind of embarrassing to me)...

but the nurses/GI don't really get that up close and personal with your butt or lower area lol (they don't stare or inspect you thoroughly)... you get to be covered up with your gown and a sheet (they just have you turn on your side and they slightly move your gown in the back where the openning is) and for me, the nurses were very supportive, comforting and understanding... when the GI inserted the colonscopy thingy, it was quick.

but in my case it was very painful but that's only because i had a severe flare up which caused too much narrowing so my GI had to discontinue the procedure and call it a day.


i have to go back this summer to try it again.... but i've had other things up my butt since then (i.e. a water bag/tubing to stretch my instestines during a CT scan, unexpected a bit uncomfortable but i got through it).


good luck... please do look into seeking more medical assessments.

 

[mommy1st]

but in my case it was very painful but that's only because i had a severe flare up which caused too much narrowing so my GI had to discontinue the procedure and call it a day.

Didn't you have sedation? Even when my colon was completely swelled shut I didn't feel a thing.

 

[cheeky]

Didn't you have sedation? Even when my colon was completely swelled shut I didn't feel a thing.

they did put some iv thing in me but it didn't make a difference, or if it did, boy i would've been in MAJOR pain... even afterward, they kept me there and had me 'rest' in the bed for a while because of the meds or whatever it was that was supposed to affect me, but i felt no different.

 

[My Butt Hurts]

Hey TT,
I am confused as to what you are scared about. Are you scared of drinking all of the liquid, or the actual running to the bathroom part?

I have had 5 colonoscopies. Although the drinking is the worst part, it's not that bad if they give you the right prep.
1. GoLytely is very salty, and there is a LOT to drink.
2. HalfLytely is the same as the first, but half as much to drink (which is still a LOT) and 4 pills to take I think.
3. Miralax is a flavorless powder that you mix with Gatorade. It tastes fine as long as you like Gatorade (I don't) but it does make the liquid a bit thicker.
4. Magnesium Citrate (or citrate of magnesium) is a small 10 oz. (I think) bottle of super sour liquid. It's almost tastes good, like sour patch kids. A small amount to drink, but I was supposed to do 2 enemas before I went. (Yeah right - NOTHING was gonna go up THERE.)
5. Fleet something or other was a salty liquid that you could mix with any other beverage, but it has been taken off the market due to kidney failure I think.
So if you can have #3 or #4, they really aren't bad!
Most of us are used to running to the toilet, so that part isn't much different than we are used to. The IV is no big deal, and if you sleep through the whole thing, then that part isn't bad either.
(Hopefully all of those details are correct. my memory is horrible for some things.)

* BIG TIP * Eat as little and as mildly as possible the day before you start the prep. The less that has to come out, the better.

Hopefully I helped to calm some of your fears. Having answers will be so nice for you. Let us knwo how you make out!

Also, if you are wanting to have a baby, I would think you would want to be as close to remission as possible. The colonoscopy could help the docs better figure out your treatment plan.