Colonoscopy Help!

[ICPrincess]

You guys are always so helpful out here, so I'm hoping someone will have a suggestion. I have severe IC and just had a Hydro done August 27 (a few weeks ago). I was in horrible pain for weeks, but finally had a few flare free days recently and was feeling great (got an infection after the hydro which finally cleared due to Cipro).

Well I have a Colonoscopy scheduled for October 16 and thought I would test drive a little Miralax and Gatorade just to make sure I was not allergic to Miralax (the last thing you want is to learn you are allergic to something you just ingested 64 ounces of). My prep consists of using Miralax after taking (2) Dulcolax tablets. I am to mix one 4 ounce bottle of Miralax into 64 ounces of Gatorade at 4PM the night before and then mix another 4 ounce bottle into another 64 ounces of Gatorade at 2AM (I leave for the procedure at 9:AM which makes me nervous as that is cutting it close there after doing all that Miralax again). That's a lot of PEG which makes me very uneasy as I know that is not good for our kidneys, but the part that has me worried is the Powerade or Gatorade needed.

After drinking two 8 ounce glasses of Grape Powerade this morning, I am in a huge flare now.

I ran an AZO test strip just in case it was the UTI coming back, but it was squeaky clean so no infection (knock on wood).

I was feeling perfect before I drank those two glasses of grape Powerade (am not allowed anything with red dye in it, but they said grape and orange was OK). I was only test driving one dose of Miralax, but the Powerade tasted so good (and I am supposed to drink 64 ounces) that I drank another glass of it. It was so thirst quenching, but I could tell it had tons of citric acid in it and left my tongue with that tart sensation (I knew then that I had made a mistake but it was too late). I have to ride it out now, but what do I when it comes to the day of the prep! If two glasses can make me flare this badly, I will be on fire with (2) 64 ounce jugs of that stuff (I noticed that both Powerade and Gatorade have the same ingredients except that the Powerade has less Potassium, which is why I chose it).

Has anyone else tried mixing it into something else that did not cause major flaring? It has to be something that will at least cover up the taste a bit. I was thinking of doing what I saw one person say out here about apple juice but that's a lot of apple juice you know. This sucks because I totally know it was the Powerade that set this off. It was delicious going down, but I could taste the tartness. Are there any that do not use all that citric acid? Is there anyone that used the Miralax prep and put it into something else? Just trying to figure out what to do ahead of time. I know they want us to drink Gatorade due to the electrolytes, but I am flaring badly here and it was after drinking only two glasses!

Any idea's? If you only knew how many times I have thought of canceling this procedure. I canceled my first appointment a week before the first time because I was that scared of the prep and getting sick from it, but never guessed the Gatorade would make me flare this badly yikes! I have to find something that I can drink 128 ounces of within 24 hours that won't have me doubled over in pain. Your suggestions would be greatly appreciated.

Also I have heard several people say that Dulcolax caused them ultra severe cramping. Has anyone substituted Phillips Milk Of Magnesia tablets instead out here as the prep start (frankly I wish that's what we could use solely for our preps because that never causes me any cramping or pain). Given a choice, I would much rather fast or be on a liquid diet an extra day and use something less severe, but that does not seem to be an option.

P.S. I can't tolerate light stuff with Aspartame.

[Skynard]

I'm not going to be much help on this one, but when I was real sick with one of my IBS flare ups, I was told to drink Gatorade. Well it about killed my bladder. My sister who also has IC but not IBS told me that if you drink the lime green, but cut it in half with water, that it does not make you flare. She was right. I am not sure, but I thought that there were other prep options. You might have to call the doctor and explain to them that what they want you to do prep-wise will have an adverse effect on your IC. There must be another way.

Wishing you well.

God Bless

[ICNDonna]

When I had my colonoscopy I had to drink a large amount of something called nu-litely or go-litely (name at least similar). They did put a little bit of orange flavoring in it, but it still tasted awful. I had to do it the late afternoon before the procedure then nothing to eat before I had the scope. The good thing is that it didn't flare my IC.

Donna

[dg2901]

I've had to do 2 bowel preps since IC. The first I was given a packet called LoSoPrep. it consisted of a powder to be mixed with 8oz of clear liquid, several pills (was either 4 or 8--cant remember), and a suppository. It didnt bother me.
The second time was two 8 oz bottles of magnesium citrate (bought at any pharmacy) mixed with a clear beverage of choice. While I struggled to choke it down, again it didnt bother my bladder.

There are numerous laxatives that can be used for a bowel prep; give your DR a call stating your issues, then ask for another suggestion.

[ICPrincess]

Thank you all so much for your help. Greatly appreciated! I just got off the phone with the doctors nurse and she said that I can mix the Miralax with plain water if I wanted. That it can be mixed with anything I can tolerate. They prefer electrolytes, but that it is not crucial. I asked about the lo so prep and she said that the doctor is avoiding all the sodium phosphate stuff because it is now known to cause kidney disease (and it involves lots of Viscodal or whatever it is that is generic for Dulcolax). She said that the Golytly, Nulytly and Colyte and all of that are all basically PEG3350 which is what Miralax is.

I told her about the flare and we came up with some ideas. It will make me flare, but at least not as badly as if I drink it straight hopefully. I am thinking of mixing only (1) 32 ounce Powerade into a pitcher of equal parts bottled water and dilute it before mixing in the Miralax. That way it has some flavor to chase away that taste and still give me some electrolytes. I am going to try that Lime Gatorade mentioned here too.

I have severe cramping with Dulolax and asked her if I can take Phillips MOM Caplets instead and she said that the doctor said it was fine. Yay! That is so much easier to use (no cramping or anything). I think I will start eating very light a day ahead of time and take a few Phillips the night before the prep to get things moving and skip the Dulcolax now that they told me I could.

I just have to believe it was that Powerade and not the PEG3350 that caused this flare. I really wish they would come up with safer preps. Even PEG can damage the kidneys so this whole thing has me freaked. I have enough damage in my body so I tend to sweat these things. My breast cancer wiped me out.

I am also having a GRD that day. He said they would give me Propofal (kind of freaked me out..especially because I am a huge Michael Jackson fan and never even want to hear that word again) and then they would put the scope down my throat and I won't even know it's there under the Propofal. Then they will turn me over and do the colonoscopy. What I really need is an out of body experience about then!

Once I am done with all of this that I had been putting off forever, I go for that Bone scan to get a closer look at the spot they saw glowing on my PET scan on my T10 spine. I pray it is just arthritis and not a reocurrence, but I just feel like I have been on some non-stop rollercoaster here. Just gets so frustrating.

Thanks again for sharing and trying to give me some ideas.

[Skynard]

When I had my Cysto done on July 10th, they gave me Propofal. I did not have any type of problems with it. I think you will be fine.

Wishing you well on your journey.

God Bless.

[ICPrincess]

Thank you for that Skynard, but I am not worried about the Propofal. That's the least of my concerns (I have had Propofal once before and was fine). It's the other stuff that has me worried. The only thing about Propofal is the sad association I will forever make with it now that one of the greatest entertainers that ever lived is gone. Very sad and so unnecessary.

[ICPrincess]

yay! I found a brand here locally "Lucky Leaf/Musselman" of Apple Juice that contains no potassium and vey low sodium. Nothing else but pure apples. I think I will do what one lady did out here that I saw in another colonoscopy thread and dilute the apple juice and drink my prep that way. I think it will be gentler than the potassium laden Gatorades and Powerades. If I dilute it, at least I won't go in to a sugar coma here or something! Can't wait until this thing is over!!

[ICPrincess]

P.S. Well now I feel like a complete nimrod. The company just got back to em via email to tell me that it does contain potassium. I then looked up the nutritional make up of apples and sure enough...potassium. Guess it will still be better than Gatorade, so I'll just bite the bullet and make sure I dilute it. I don't like the taste of Pear juice at all otherwise I would have thought of that one. Blueberry juice is so intense and I need to be able to get down a lot of liquid from whatever it is I pick, so I guess I will just keep my fingers crossed and do the diluted apple.

I feel like a schmuck now as I should have realized that apple juice would of course contain potassium!

[em1]

I wish you the best of luck. I've cancelled 3 CS because of allergies to the preps & also passing out during the prep from low blood sugar. There is several organic juices that will have nothing but pure juice. I had a bad headache from Miralax but it has no taste so it mixes well with juice. The thing that taste best to me was lemonade but of course will probably cause a flare also. There was so much to drink I was going to try part of it in lemonade & part in ginger ale just for variety. I wasn't dreading the actual CS just the prep. I know I've still got it to do.

[ICPrincess]

Wow just an update on the prep here. I had been dreading this day like no other, but so far its been a breeze basically! I'm shocked and grateful. I just hope the colonoscopy and EGD go just as well tomorrow (They are going down my throat to take a look before the colonoscopy). I was so scared of the prep, but I've had no nausea or cramping! I am a little weak and hungry, but I am going to splurge and get a pizza after the procedure. I know its not good IC food, but I want to celebrate making it through and have been craving one for days!

The nurse I spoke to the other day by phone told me the Miralax was truly the best prep and that many are going to that now, but I didn't believe her at first (I'm a believer now)! I guess because it's not some icky bag full of shelf stable solution that could have been sitting there for months, it makes a lot of difference when you mix your own fresh. She told me that she had one done two years ago and drank that stuff and got very sick to her stomach, but that the Miralax was a breeze. I kept thinking yeah she is just trying to calm my nerves but she was right! Its all the same drug (PEG3350) in all of these liquid preps now (they have taken Sodium Phosphate based ones off the market).

The Miralax is just the straight PEG3350 powder, only you get to mix it with what you want and it tastes great! That I did not expect! I bought a 32 ounce Orange, a 32 ounce grape and a 32 ounce Mountain Berry (blue looking-no red) and just mixed a glass as I went along alternating between the flavors and it was delicious (I used Powerade because it tastes so much better than Gatorade to me). I used the regular because artificial sugars and I do not get along. It just feels like I have been on a juice fast all day (not a nasty prep). The Miralax granules almost taste like sugar crystals in the sugary Powerade so it does not taste like prep at all.

I am finally clear now and didn't even need to drink the last two glasses (I have not eaten anything else, not even jello so maybe that's why). Just putting this out there if it can help someone when they come here and do a search for Colonoscopy like I did. Miralax is the bomb! Not nearly as bad as I thought (knock on wood)!

After this its onto the bone scan to see what that spot was on my PET (praying its not a reoccurence) and then an abdominal/Pelvic CT (that I am looking forward to like the plague). I've heard that stuff they make you drink is truly nasty and I am not happy about the iodine injection because that stuff can harm perfectly healthy kidneys so its not just people with present kidney trouble (that's why my Oncologist recommended I take a couple of NAC pills before and after the test to help my kidneys process and detoxify after getting the injection).

Here goes nothing (just want tomorrow to be over with)!

P.S. I decided to use the Powerade after all because I figured I would flare anyway and this will at least keep my electrolytes up, but so far no flare so I guess there is a GOD!

[sailawaygrl]

If you have to drink the stuff I did for the CT it is like a foamy nasty stuff. They say it is flavored but I just tasted ick. At least they kept it cold. I finished the whole cup and then they gave me another one!! That was not fun, but it is doable. I think the dye your are talking about is the one I had too. They told me that I would feel like I wet my pants but I wouldn't, they weren't kidding!! I seriously was so convinced I had peed on the table. I had to do that one twice. I didn't like that at all. But as I said before, I got through it fine and I am sure you will too. I hate having to do things like that. Don't we all, but thankfully we have the technology, it saves many lives.

Last week, after my outpatient surgery, I had to pee before I could go home. I wanted to pee so bad. I drank sooo much and still couldn't pee. The nurse ran water, put some stuff in the little bowl and then finally after two hours they told me to put my fingers under the running water and I peed enough to go home!!!

I hope everything goes well for you with your tests.

[ICPrincess]

Well I made it through! The nurses were all so nice (and the doctor I have is a doll). Much nicer than that horrible new urologist I went to for my last hydro in August. I was so nervous, but its over! They found a few polyps but they were very small (they will get back to me to let me know if everything is OK with those). They also took biopsies in my stomach of the tissue through the endoscope. They didn't see anything serious so that's a blessing (I have IBS and it can cause me a lot of distress, but thank God its not Crohns or Ulcerative Colitis as we have Crohns in our family). Just hope the polyps are nothing.

The only bummer is that the EGD (the endoscope that went down my throat) left me with a sore throat. I did just notice a little bleeding but not much. The only other thing is that they had me on my left side for everything and that's where my left arm is where all my lymphnodes were taken (and I have severe fibro) so I have major aches there today and in that shoulder. Hopefully that will go away here soon. Just so glad its over!

Now its the Bone scan next and the abdominal CT and my yearly mammogram and then I can finally exhale! Its been a rough few months.

Sailawaygirl that sounds awful. Are you sure it was a CT Iodine contrast? I say that because it sounds more like a Kidney IVP or something. I had one years ago and just remember feeling very warm as it ran through me, but luckily nothing major by way of side effects. I am worried about my kidneys though because that contrast is not good for them (even worse is the MRI contrast which I have refused to do). The drink sounds yucky. I think its worth it through because it will tell answer the remaining questions my Oncologist has about my enlarged Adrenal Gland and that sharp pain I always get on my right side. Also will give is another look at that spot on my spine that showed up on the PET scan (though the bone scan is mainly for that).