Any tips?

[iCrohnie]

Alright, I'm not sure how long this is going to be, but here it goes.

I'm 15 years old, and I was diagnosed with Crohn's Disease about 4 years ago, Ileitis to be exact. I was in remission for about a few monthes (that's typically how long they last for me) but I started flaring up again in December of 07, and ever since it's been getting worse and worse. All my medications have been raised (Pentasa [3,000mg] and Azasan (generic for Imuran) [100mg], as well as 2 vitamins, 2 calcium supplements, and one fish oil tablet.) but this hasn't seemed to make any difference. I have constant stomach pain to the point where I can barely walk or get out of bed. On May 12th [Monday] I had an Upper GI to see if my narrowing in my small intestine has changed at all, and the radiologist who looked at my pictures from before and the ones from now says that he sees no change. My doctor, who's beginning to think that surgery is my last option, has been out of town the past couple of weeks so we've had to deal with his nurse [That's a whole other story, which would probably belong in the ranting section.] who made me an appointment with a surgeon at the closest Children's Hospital so I can become an established patient [May 13] and I FINALLY get to see my doctor [Who hasn't even seen my pictures yet.] on the 15th, which is when he will determine whether he wants another colonoscopy done [I haven't had one since I was first diagnosed.] or if he wants to go through with the surgery. Have any of you gone through a similar situation? If so, how did it turn out?

Another thing: I kinda figure he'll want to do the colonoscopy, but I have a LOT of trouble drinking the medication. I just can't keep it in my stomach. And it's not just the taste, I think it's my tolerance too. During my last colonoscopy, we had to call the doctor and ask it I could stop drinking it because I was crying with all the force of my vomiting. Now, I've heard of a pill that has the medication in it, and if you take it with your other clear liquids your required to drink, you don't have to take the mega nasty liquid. From what I've read though, it says that it's an adult medication. Would I be able to take this instead? (I'm taking an adult RAISED dosage of Pentasa and pain medication)

Any help would be appreciated. I'm a little desperate.:confused2:

 

[katiesue1506]

You can only ask if they can provide you with the pill form of the prep. If not, you can help yourself along by not eating very heavy foods and sticking to lightly colored foods for the few days before the prep. Then you won't need to drink all of the prep. Of course this is all a risk game... because if you end up not clearing yourself out enough, you'll just have to reschedule and restart the prep process.

I will tell you that I had mine and I hadn't been eating much of anything anyways due to my condition, and I drank about 1/3rd of the gallon of prep and I was cleaned out alright.

 

[Jeff D.]

Welcome to the forum. What are you using for prep? I use miralax and take a dose once every hour for five hours and that cleans me up. Ask if you can take that. It mixes with any drink well and the only thing different about hte drink is it is a little thicker. I wouldn't recommend taking it with water though but gatorade or crangrape juice work very well. Best of luck and keep us posted with how your doing.

 

[butt-eze]

I would think that you could talk your doctor into taking the pills. I tried last prep and they said no. I think they like us to drink the nasty stuff because it's actually more mild on our symptoms. I Agree with KatieSue on the amount you have to drink. I drank only half of mine last time because I could tell that things were all clear.
I'm sorry you're having to deal with this. I can't imagine how hard this must be for a teenager. I'm proud of you for seeking advice!

 

[iCrohnie]

@KatieSue - How do you know if your completely cleaned out and you can stop drinking? During my first, I was told that I had to keep drinking no matter what. I only got though about 3/4, but I'm sure some of it came back up too.

@Jeff D. - I take Miralax all the time, but I never knew you could use it for a colonoscopy prep! I'll have to look into that. (We have the economy sized bottles for because I need it so much. )

@butt-eze - Do you know exactly how to tell? Like I said before, I was told that no matter how I was feeling I had to drink the whole bottle, and that didn't turn out too well.


Thank you all for your advice and kind words, it's really helping me alot.

 

[katiesue1506]

Until you're "running clear".... or yellow like I was. All that came out was a yellow liquid

 

[Kev]

Well. one time.. can't recall whether it was my 2nd or 3rd scope prep... but I was at a stage where I literally couldn't eat anything anyway.. drinking was no joy either.. But anyway, a wise old nurse at the GI clinic told me to try drinking 1/2 the solution a day ahead of my 'prep' day... stick to clear fluids for the balance of that day, then drink the remainder of the solution on the 'normal' prep day. sure was a godsend at the time. And, tho it is extremely hard to do, the more your system is cleaned out, the better; more accurate the view they get during the scope. I am guessing they want to do the scope to see if your disease has now involved the colon. but it wouldnt' hurt to pose the question about the alternate pill scope prep method to your doctors before the exam.

As for resection surgery, I had it, and it was literally the 'easiest' operation I've ever had. Then again, I did exactly as I was told, and had no complications. I know other folks on here who have had complications, some pretty severe. Its just a guess, but I believe those are the exception to the rule in resections, IF one takes precautions, AND if the operation is planned, not an emergency one.

 

[coachvee]

Re the prep thing... On my first colonoscopy I remember that I was so very close to being sick. We were asked to drink 3 litres, so 3 jugfuls - I managed to hoik down two, but when I came to the third I felt sure I would be sick. I figured it would be better for me to keep down what I'd already drank, instead of throwing it up, so I skipped the 3rd litre, and actually it was fine.

On my second colonoscopy (a few months back) I was so proud that I managed to get down all of it (hold the nose, get it down, drink a bit of water and spit it out.. repeat!) - unfortunately, it didn't matter anyway, because they couldn't get all the way around to my small bowel anyway (despite being sedated twice it was causing me too much pain, I guess they couldnt fit the bloody hose through) and I had to have a barium enema on the same day. -_-

On a tangent... that stuff is so disgusting (Kleen-Prep) - I told my boyfriend I have to drink 3 litres of it, got him to smell it and he was almost sick just from the smell - so he was properly sympathetic!!!

The best rule of thumb though is what Katiesue said, about "running clear" - well, the explanation it gave in the leaflet was "Look in the toilet bowl and see if there are any solid bits" - nice >.>

I hope everything goes good for you & keep us posted - sounds like your symptoms are more severe than mine but I am in that similar, airy-fairy stage of "Do we carry on with meds or go for surgery" as well.

 

[iCrohnie]

Just an update for anyone that may be curious:

Sunday night, I was rushed to Children's Hospital due to severe stomach pain. I was curled up in a ball, unable to move and barely able to breath. When I got there, all they said to do was raise my dosage of prednisone (25mg at the time, my doctor was tapering me off of it because it wasn't working and had too many side affects). Of course, we called the nurse and she said to keep the dosage the same.

I also had my appointment with the surgeon at Children's today, and I have surgery to remove the disease part of my small intestine scheduled for June 18th.

Your prayers would be appreciated.

 

[Guest]

hi - sorry i'm late to your thread & to welcome you.

i'll be thinking of you & sending my very best wishes for the op and a straightforward, speedy recovery. just look forward to the day when its all done, the diseased part has gone, & you're sitting in your hospital bed actually looking forward to, and enjoying, mealtimes. its an awesome feeling, after suffering at the mercy of crohns - and one well worth keeping as a goal in your mind. good luck

 

[elp888]

Are you still having the colonscopy? i had my first 2 months ago and instead of the Kleanprep everybody warned me about, i was given 2 small bottles of laxative (to be deluded with water), which wasn't bad at all, just a bit salty ... i just wish i could remember the name (starts with a p or ph).

i'll be having surgery soon too, so thinking of you.

good luck,
e.

 

[elp888]

Are you still having the colonscopy? i had my first 2 months ago and instead of the Kleanprep everybody warned me about, i was given 2 small bottles of laxative (to be deluded with water), which wasn't bad at all, just a bit salty ... i just wish i could remember the name (starts with a p or ph).

i'll be having surgery soon too, so thinking of you.

good luck,
e.

 

[pennywanna]

Are you still having the colonscopy? i had my first 2 months ago and instead of the Kleanprep everybody warned me about, i was given 2 small bottles of laxative (to be deluded with water), which wasn't bad at all, just a bit salty ... i just wish i could remember the name (starts with a p or ph).

i'll be having surgery soon too, so thinking of you.

good luck,
e.

I had the same concoction you had, and the ph your are trying to remember is Physosoda, I think small bottle but yuck, but I do take a laxative cause I only drink 3/4 of the kleenprep, gross eh.

penny

 

[pennywanna]

Hey Icrohnie, I am sending some angels your way, and prayers, but dont worry you will be just fine. A little tender, but just think how good you will be for awhile!

luck and Laughter , Penny

 

[Reese1603]

I was given GoLytely and it was horrible. I had my first colonocopy on the 18th of June and that was the same day I was diagnosed with Crohn's. So, I am new to this.

I drank about 1/3- 1/2 on the first night - I got it down but I did not follow the 8oz every 15 minute time frame like they told me. I had horrible nausea and could harly keep myself from throwing up.

The next morning I was supposed to do the second half. I got two glasses into it and threw it up - drank some more after the half hour break they give ya - threw that up, then decided I had enough. My stools were clear yellow, with the occasional "solid" but very little.

When I got to the hospital I told the nurse I was still having the urge to go and that I couldn't finish the prep - she said not to worry, that most people cant (espeically women - they said that most women can't keep the prep down either) and that during the procedure they could suck up any "stuff" that was still in there.

I was WIDE awake during the whole thing. They had an IV in my arm and supposedly gave me several rounds of sedatives....but my theory is there was a leak somewhere or the needle wasn't in my vein. All I felt was a little light headed but nothing else. IT was PAINFUL! (I've had an endoscopy before as well, so I know what the sedative feels like. I only was given slightly less than I got for my endoscopy - so the feeling should have been close. I was OUT COLD for my endoscopy. )

I was wondering - how often to people with this disease have to have a colonoscopy? I was hoping I wouldn't have to have another one....welll.....in forever...but apparently that won't be the case. I just think that sometimes the prep for the procedure is worse than the condition itself! Ahhhh.

 

[Guest]

i'm having my 2nd one in 12 months, in a few weeks. my consultant wanted me under a general anaesthetic for it, but i asked if i can just have heavy sedation instead. hope i don't regret that lol. the one i had last year was more traumatic for me just before it took place - i sat in the waiting room and read the risks of the procedure, and then announced to the receptionist i'd decided not to have it & was going home. the doctor & two nurses talked to me for ages, calmed me down, and i eventually stopped crying like a big baby and went through with it. it did hurt, but it was over in minutes, thank goodness.

 

[BWS1982]

Colonoscopies for me have just been blurry, vague memories, like some messed up dream of government agents searching my ass for weapons of mass destruction. I wouldn't be surprised if I one day have a hazy recollection of Bush saying "they gotta be there, I know we can't get oil outta 'em"!

I've always been way "out of it" for my scopes, but not "under".

 

[Reese1603]

I am hoping that if I have to have another one I won't be quite so "awake" for it. That was traumatic for me!