Any double preppers out there?

[Entchen]

Hi all: Because 4 litres of Colyte didn't work last time (sigh!), this time (double balloon c-scope next week), the tentative plan from the GI's office is for me to do a double prep. I'll be cutting out all fibre on Sunday, going on clear fluids + Ensure on Monday, drinking a bottle of mag citrate on Tuesday, and drinking 4 litres of Colyte on Wednesday (procedure the next day). This might change, pending further conversation with the GI (my usual guy doesn't do double balloon, so this is someone else).

Do any of you do double prep like this? Any tips on getting through it and dealing with possible headache, etc.? I'm told that this time I can mix in Crystal Light with the Colyte, which should be a real help, and I've purchased Gravol to help with nausea from both preps.

Thanks heaps!

 

[Crohn's 35]

Kelly that is alot! Mag citrate alone is a prep. Do you constipate? I have never had a double prep, always used Pico Salax and always clear. Dulcolax the night before the prep. Good gracious girl I hope you are ok with all this! :hang:

 

[Entchen]

Hey Penny: I've got nausea just thinking about it!!! I'm practicing telling myself that it will be just fine and that I can approach this with a sense of humour. But to be honest, drinking the bottle of Mag Citrate last April rated high on my list of life's most unpleasant experiences (nausea x lots). Drinking the 4 litres of Colyte last May equalled or possibly surpassed the Mag Citrate in unpleasantness. Doing both in two days? I kinda want to cry. Am choosing to focus on getting the things done that need to be done (ex: canceling my Weds night class if the GI says that I can't shift my prep time) and also focus on being thankful that my GI is willing to keep looking to get me back to a level of good day-to-day health. But...hmmm....not thrilled.

 

[Rebecca85]

Oh man, good luck with that! I just managed to get clear, I was still going to the toilet at the hospital and my bowel still had material in but it was liquid so they suctioned it out as they went. Next time I will start the prep a little earlier. But all I can say is, best stock up on those clear fluids! You will have to drink drink drink! Maybe get some dioralyte (or whatever its equivakent is where you live). If you do take any meds, get soluble or liquid ones or crush any tablets, otherwise you have no chance of absorbing them!

 

[Cat-a-Tonic]

Wow, I can't even imagine doing a double prep. I just had to do 1/2 prep for my pill cam last week, and even that was enough to make me really dehydrated to the point where I had to have IV fluids. Hopefully your docs understand that A. the stuff is horrible and nausea-inducing and B. you're only human and it would be hard even for Superman to drink that amount of it. Just do what you can, I'm guessing they'll be understanding if you can't drink the full double amount! Good luck, I hope it goes as well as it possibly can!

 

[Entchen]

Thanks for the responses. Info about pill absorption is good to know! I'll be sure to stock up on extra fluids. I am not concerned about dehydration from the Colyte since it's balanced w/ salt, etc., but I do tend to vomit from Mag Citrate, so I'll be sure to up the fluid intake before doing the first prep.

But...has ANYONE done a double prep? I really really want to make sure that I am cleaned out since the nurse indicated that it's especially important for a double balloon procedure. I need to do this for me and would greatly benefit from hearing about others' experiences. Thanks!

 

[Entchen]

Hi all, and a quick update: I got the GI's blessing to do Pico Salax instead of Citro-Mag as the first of the two preps. So nice!!! The taste was perfectly fine, only 300 mg across two doses anyway, and it's been reasonably effective. I won't be, uh, cleaned out, by the Pico Salax, but there's still 4 litres of Colyte to drink tomorrow night. Am hopeful that the combination of the two preps will be enough! The Pico Salax has gotten me far enough along that at least I'm not too anxious about the procedure being cancelled. The pharmacist I spoke with yesterday said he's NEVER heard of the Colyte not working for someone. How special I am.

I've already had my usual prep cheater snack, a couple tablespoons of chicken wing sauce, and am allowing myself a small amount of Ensure today, plus maybe one before class tomorrow night. I have permission to drink the Colyte at 9:30 p.m. (after class) instead of the usual suppertime start time, which I thought was very kind of the GI to allow since often these routines are pretty set in stone.

 

[2thFairy]

Geez Louise! I really feel for ya!

I'm in the middle of a split-night prep today. This isn't so bad, but I have done 3 liters of Golytely before and was absolutely miserable doing it. I was completely cleaned out, however.

 

[Entchen]

Hiya: A split night prep would be just as much work -- you have to set aside so many hours each time! Hope it goes very well for you. A little while ago, I did a taste test of unflavoured Golightly + lots (lots) of dragon fruit and mango Crystal Light and it's...not too bad! I didn't gag, and I gagged through the entire 4 litres of pineapple Colyte last time. I'm pretty good at doing prep and drinking the various things they make us drink, but it was awful.

 

[Shannon]

Ah just reading this makes me nauseous. I'm really sorry you have to go through with all that. I am still in Pediatrics and for my scope prep, they just mix Miralax in two pitchers of Gatorade, and have me take two Dulcolax tablets before and after I down it. I thought THAT was bad, and now I'm very humbled!

 

[Entchen]

Hey Shannon: Two pitchers is a lot of work, too! We all have our own individual challenges (and, re. your signature line, a lot of fervent prayer has gone into this - such a help).

I've finished 5 out of 16 cups of the Golightly. Getting permission to add Crystal Lite has made all the difference in the world: haven't gagged or thrown up once thus far! I think because I'm already pre-prepped (Pico Salax), things are working more quickly this time, too. Might not even have to drink all 4 litres.


QUESTION for the group: I've been instructed to drink 2 litres now and 2 litres in the morning. I have to be on the road at 8 a.m. to make it to the hospital in time for my appointment (rush hour = longer trip and more difficult time finding parking). Do you think it will be okay for me to drink all 4 litres tonight???? I'm only 10 hours away from the appointment time right now. Thanks!

 

[Shannon]

Hey Shannon: Two pitchers is a lot of work, too! We all have our own individual challenges (and, re. your signature line, a lot of fervent prayer has gone into this - such a help).

Very true! God is faithful to add strength and sufficiency.

 

[Dallies]

Hiya Kelly, sorry I can't offer you any advice, but just wanted you to know I'm thinking of ya!!!! XXXXXXXXXXXXXXX

 

[laura4232]

The first colonoscopy I had 5 years ago I prepped with a small 4oz bottle of fleets phospho soda. I just had one two days ago and they gave me a prescription for pills. It was called OsmoPrep. This was fabulous compared to having to drink some nasty crap. You have to take 20 pills in an hour starting at 4pm the day before and the other 12 at 9pm.

 

[Crohn's 35]

Hey Kelly did you get the test done? What was the results? And was your prep good?

 

[Entchen]

Hi Penny: Thanks so much for checking in. I really appreciate it!

Double balloon colonoscopy found 15 cm very active ulceration in small intestine (starting at terminal ileum), extensive past (healed) damage in small intestine, and colon is currently perfectly normal. Wonderful news re. colon, and a bit surprised about the small intestine -- suspect it could be mostly new stuff from the major pain episodes I experienced last month, because past tests hadn't indicated much at all (although it's never been directly imaged before today).

Will be discussing options with my GI at an appt in near future (his colleague did today's procedure). Today's GI said I'll likely be placed on one or more of Pentasa, Entocort, and/or Imuran. My vote will be to go with the least toxic (i.e., not Imuran) to see how that goes. Pred + Salofalk was sufficient for the colon, so maybe the same will hold true for the small intestine; i.e., that the milder and safer meds will work.

My diagnosis is now officially moderate Crohn's. No more mild, sigh! But, we learned important information today and it's good to have a plan for moving forward.

Still recovering from dizziness and nausea as result of general anaesthetic. I was supposed to be out of hospital at 12:15, but stayed till close to 4 pm, with my sister feeding my ice chips. What a hero she was! She hauled me to her car in a wheelchair and everything. Now (9:30 p.m.), as long as I stay still and move slowly if I have to move, I'm doing all right. Sipping water and eating small amounts of soft food.

Oooh, and I have a fat lip and bruises on my neck from the general anaesthetic!

The challenging news that I got today is that my blood pressure is high (164/128 or 118, I forget which, across several measurements throughout the day). In fact, there was some question about whether I could even have the procedure today because of the blood pressure. Prednisone is almost certainly contributing to the high number, but it was edging higher before the Pred, too. I am hopeful that my physicians (family + GI) will now take me seriously when I express my concerns about the continued weight gain since I devleoped Crohn's -- and its potential for long term effects. I was told flat-out today that I am at risk for a stroke. Oh, my soul! What happened to the half marathon runner who lived on salad? Am going to see my family doctor on Saturday to ask for her help (the people at the hospital strongly recommend going on blood pressure medication right away). Till now, my concerns have been largely dismissed since "people with Crohn's lose weight."

 

[DustyKat]

Hey Kelly,

So good to hear that they were able to scope your "loopy and floppy".

Sorry to hear about the upgrade and I hope that the meds bring things back into check. Fingers and toes crossed!!!

Oh, that is challenging news about the BP, thank god you finally have your concerns validated. I wish you all the luck in the world with doctors appointment Saturday, please keep us posted!

:goodluck::goodluck::goodluck:

Take care, :hug:
Dusty

 

[Entchen]

Will do, and hugs to you, Dusty!

 

[Shannon]

Thinking of you and I'm glad you got needed info - now the emotional healing process can begin, with the physical catching up soon I hope! Yes the Pred elevates my blood pressure as well, racing heart beat, the works. I'm only 17 so I know how you feel about 'what happened to the healthy me!' Truthfully though I feel like this has been my plague for some time, was always a tired kid. Getting an accurate name for it has helped, and narrowing down the specifics of my case has as well - so I'm glad you're getting there too. Keep us updated!

 

[Crohn's 35]

Thanks for telling us your results Kelly.. well one good thing is your colon is ok, but I also had the same areas affect. I agree for you to be on milder meds, just hope no more pred, it really does a number on our bodies.

I am opposite to your blood pressure,mine is always text book, my last scope 112/65. If you have diahreah I would use Questran because it is also good for reducing cholesterol. My 75 yr old ,mother is on it and she has to be careful of her weight, which is high.

My mild pill would be pentasa and Entocort. But those dont work for me any more. I gather you prep was sufficient?

I dont have anaethesia, I get 3 needles and two are demerol and a forget drug , but dont know the other...no nausea or dizziness, I am wide awake and ready to get food lol. Let us know what your Gi says how you will be getting treated. Hugs!

 

[Entchen]

Hey Penny: They brought out a water flusher tube thingie to use during the procedure when I warned them about the poor prep, haha. I am totally going to remember in future that they have this option.

Re. the general anaesthesia, it sounds like this is common practice for double balloon procedures at my hospital. I am not sure which I would prefer in future: having no pain during procedure but being sick for a day afterward (general anaesthesia) or having some pain for the 60-90 minutes that they are going through colon and small intestine but a fast recovery afterward (conscious sedation). Then again, given the pain in my core area whenever I cough today, I have a feeling the balloons and tube might have gone to town in there and it's good I was fully out!!!

My cholesterol is excellent, which is another reason the high bp is surprising. I really hope that it goes back to normal once I'm off the Pred and once we figure out a way for me to lose some weight. Unlike my last few multi-day preps, though, I did actually lose some weight this time, so maybe my body is finally ready to respond and stop hoarding all the weight it can get. It's discouraging to go to the gym a little bit fatter every time! My instructors are giving me looks and I was ordered to pedal less quickly last week in spin class.

 

[Entchen]

Hi, and a doctor visit update: My blood pressure is still above the safe range, but not scary high today. I'm going to monitor it for a month and then check in with my GP again, but especially if it goes down after Prednisone, I'll be able to avoid blood pressure meds. Fingers crossed!

 

[Shannon]

I'm sure Pred has a lot to do with it - no worries! Sometimes I feel like I'm having heart palpatations on it. I'm on my way down the taper too, though.

 

[DustyKat]

Right there along with you Kelly! Keeping my fingers and toes crossed that your BP problems are caused by Pred and you can avoid antihypertensives!

:goodluck::goodluck:

Thinking of you, :hug:
Dusty

 

[Entchen]

Hi again -- quick update: Stomach pain and other Crohn's symptoms are slowly but steadily increasing as the Prednisone dose continues to decrease. Pain isn't debilitating but there are several daily episodes when I just need to verbalize the pain and then breath through it. Thankfully, each individual episode is not generally very long-lasting right now.

Blood pressure is still high but still --usually-- under the levels that will get me placed on medication if those levels become consistent. The good news is that, if I measure in the "call the doctor" zone (per GP instructions) at one time point, I'm always in a safer zone at the next time point.

Will be at 20 mg of Pred when I take the next dose several hours from now, which is EXCITING because it means soon I'll get to do a big switch and try a medication tailored to the small intestine - for the first time! But at the same time, now the lower doses I'm now going back and forth between days spent in bed sleeping (12+ hours, like Tuesday) and days of sleepnessness and high anxiety (like today -- even my dreams last night were high anxiety dreams). I've been feeling sad, too, a kind of overarching sadness that's sticking around no matter what I'm doing. My happy-go-lucky self isn't comfortable with this state. This inconsistency in sleep, mood, etc. is challenging and I am looking forward to regaining equilibrium in 4 weeks when the taper has finished, if not sooner. I seemed to do really well on the Prednisone at the 35 and 30 mg doses: higher than that and it was racing heart and swelling cheeks and joints, and lower than that and I'm tired and sore and anxious. Really, it's the anxiety and sadness that are the toughest, even harder than pain, but I'm trying hard to remind myself that it's the medication causing this, even though it's still a very real experience to be going through.

Anyway - 2:30 a.m. here and I'm going to try to sleep (7:30 wake-up call). I couldn't sleep earlier because the anxiety was bringing up long past bad memories and making me...more anxious. Now that I'm exhausted, maybe I'll simply drop off before my mind has a chance to start racing again.

 

[DustyKat]

Hi Kelly,

I so hope the transition from Pred to your new meds is successful and allows to find both relief and peace. I'll be thinking about you and keeping my fingers and toes crossed! Sending loads of squishy hugs your way.................

:hug::hug::hug::hug::hug::hug::hug::hug:

:hang:

Sweet dreams,
Dusty

 

[Dexky]

Kelly, I hope you are sound asleep!! I'm sorry I didn't know you were having these other problems. Don't let the sadness get too deep!! Seek help if you need it!! Wish I could do more!! Am here if a chat will help anytime!!

 

[Entchen]

Thanks so much, you two. Hugs caught and used to fullest benefit. Mark, I will ABSOLUTELY see someone if the sadness lingers past a couple of weeks. No problem taking full advantage of any and all resources available for challenging times. I can track it to starting when I switched Pred doses so I'm pretty sure it's from that,although of course getting it fixed is more important than tracking a source. Today I spent time with friends (nice to work at a place filled with them!) and am going to spin class this evening. The combination of the two should be pretty effective.

 

[Entchen]

Quick update: Sadness gone (yay!) but I'm a bit mean these days and it doesn't even seem to bother me. Must stop, think, take breath, think again, and hold tongue, whether I care to or not. Only two more weeks on Prednisone!!!!! I gained another kilo last week despite being careful with food and getting in lots of YMCA visits and bike rides. Hopeful that I'll be able to bring the weight down quickly (not to mention stop being mean!).

But the best news of all is that I have had virtually NO PAIN for 8 whole days now. I had daily pain for 54 weeks, with perhaps 4 or 5 exceptions (days without significant pain). And now 8 whole days off? Wow. I've been squeezing in as much activity as possible, and getting lots of work done, too! All of my other symptoms remain unchanged, but I care much less now that I'm not hampered by pain. Plus, I've discovered that regular short videos during lecture are a great way to work in time for bathroom trips, for the days (like today) when I can't make it through the whole hour.

 

[DustyKat]

Fab news Kelly! :emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance:

Good on you and may it last and last...............

So happy for you,
Dusty

 

[Dexky]

Good deal Kelly!! I hope it continues post-pred Kelly!! How's the sleeping been?

 

[rottengut91]

That's great news. I bet you feel like a whole new person.
I know what you mean about being mean...pred does that to me as well. I'm finding myself being meaner and shorter with those around me lately, and I'm not even on pred right now. Living in pain for so long finally starts to get to you. Plus I'm about a week out from that time of the month, I always notice these types of feelings around this time anyway, but it's seem compounded by already not feeling well to begin with.
Anyway, I hope you continue to feel well.

 

[Entchen]

Aw, thanks, all!

Rottengut, you've hit the nail on the head.

Mark, it's improving -- less waking up through the night, fewer nights when it takes hours to get to sleep.

Starting to see the light at the end of this tunnel.