Hello - first time posting here and looking for some advice.
I recently had a bout of what .I had previously been told was dysentery for the third time in 5 years, where I spend 18 hours V&D passing quite a lot of blood. My gp finally sent off tests this time which have come back negative for infection but fecal calprotectin of around 780, high crp, my ferritin has gone up to 386 and my folate has dropped to only just in range - my folate had dropped too low last summer with no explanation which I now think was probably connected. I had a fit test done 3 weeks later which also came back positive. There is a strong suspicion based on the tests and my history that I have IBD but no diagnosis yet.
Despite my tests coming back marked refer urgently to gastroenterology my gp totally messed up. I was only referred after I asked because they missed it and then they did it under the cancer pathway when apparently it should have been on a different gastro one. They also forgot to send in the urgent form for the 2 week wait team until I chased it 2 weeks later when I hadn’t heard anything and finally sent it just before the bank holiday weekend, delaying it further.
So to cut a long story short I have a colonoscopy booked for Monday afternoon which is some 3 weeks later than it should have been and I’m now crossing everything that there is still enough evidence visible to get a confirmed diagnosis and I’m hoping for some tips to help find the best way of making it go smoothly.
I have the prep to start from 6pm Sunday so my plan is to start reducing my intake from today. I had in my head to go with eating small amounts f toast, soup and either pasta or rice today, tomorrow and until around 2pm Sunday but if anyone can give any other advice to make that part as painless as possible that would be much appreciated.
Also I find if I’m not eating I get really shaky when my blood sugars drop and start to get bad acid. Does anyone know if I’d be ok drinking something like lucosade sport to help minimise it?
Many thanks in advance and crossing everything that I finally get some answers next week 🤞🏻
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Mifford
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Have you not been given any advice about the two days of low fibre diet (white bread, rice, pasta, chicken, fish etc) and when to stop eating altogether? If not, you're on the right track. I would stop eating after Sunday morning. Try clear fluids which can be any soft drink that isn't red or purple, black tea or coffee, clear soup. Sometimes people make jelly as a change from fluids. If you've got Moviprep, there is usually a timetable in the pack. Good luck!
it is odd that they would not have given you an instruction sheet with the requirements. Valbaty54 has given you some good advice. I am going for a colonoscopy next week as well and could type out the instructions I have but they may differ for the place you are having it done. My brother-in-law had one done a couple of weeks ago at a different hospital and his instructions were a bit different than mine so i think you should contact the place you are getting it done to get their instructions . Good luck and I hope all goes well for you.
Hi Mifford I had the procedure a couple of months ago.
My appointment was an afternoon one thus i started taking the preparation around 6pm the night before with the second dose around 6am the day of the procedure.
The first dose took about two hours to work, was easy to drink..just don’t wander too far from the toilet. Think it took roughly 3 hours to pass through. Next mornings dose worked more quickly and passed through in about two hours.
Food wise i had a light snack around 1pm the day before..white toast with jam (jelly)
Just follow the instructions on the pack.
It seems if you do the job properly it makes life easier for the consultant. I opted for sedation so was quite relaxed watching my insides on the monitor.
Hi Mifford, I have an appointment with the gastroenterologist this Wednesday to schedule my endoscopy and colonoscopy. The prep is the worst part. Your gastroenterologist should have given you instructions as to the liquid diet stay away from reds, blues, purple colors and coffee and tea. It has been a few years but basically yellow and green jello and gatorade are okay along with clear soups her in the US but like the others have said each place is a little different. I learned several years ago not to take laxative and prep at the same time. It caused incontinence for me so never took them together since. The gastroenterologist prescribed the two together. It was awful between the shower, toilet, dressed only to go through the process several times and laundry. My late husband stepped up to the plate and helped me with cleaning and laundry. I wish you the best and that all comes out well for your procedure. The doctor here takes pictures and tells you if he saw anything but pathology takes a few days to get results on that.
One more bit of advice.....a colonoscopy and endoscopy are a great start. Should things come back "negative" from an IBD perspective, it doesn't mean you don't have a serious issue. Insurance wouldn't cover the cost of a pill camera. This is the only way to see your small bowel and some Chron's is small bowel only. I paid for the test out of pocket as I have been through misery the past three years. What we learned is that my stomach is paralyzed. I was getting all the wrong meds from a GI perspective. The technical term is gastroparesis. There is another study that requires minimal prep called delay gastric emptying. Both the pill cam and that test look at things that your upcoming procedures won't be able to evaluate.
As for the prep, I to do not take the prep with a laxative. If you reduce your diet as folks are suggesting, you don't need to put your body through that much pain. The prep itself should do the trick as you eliminate food leading up to the procedure. Best of luck! This is a great site for support.
many thanks for the advice everyone. I think my post may have been misleading - I have the instructions for low fibre from today and no food from 3pm tomorrow plus what to drink etc it was more to see if anyone had any practical tips of anything they found that helped or even anything that they’d avoid in future.
I’ll definitely push for the pill camera if this shows nothing - my stomach takes a disproportionate amount of time to digest food so had this as a flag to raise once I see a consultant so thank you for the reminder.
I’ve cut my intake down quite a bit today in the hope that less in helps and also prepares me for being hungry once I stop eating so fingers crossed the prep tomorrow goes as smoothly as possible 🤞🏻 I’ve been given something called plenvu where I take the first one at 6pm tomorrow and the second one at 6am Monday - knowing I should be able to sleep tomorrow night without it being a problem is a relief - I’d imagined being up all night 🤦♀️
Had mine done a few weeks back. The first round of prep did not work for me probably because of the about 1/4 I couldn’t stomach and the anxiety that it was not going to work. Took the second round at 6a.m and it worked within 20min. Took about 2-3 hours to pass everything through and through. I thought it was going to be a painful experience with cramps similar to a gastroenteritis but surprising there was zero pain (however you need to be at a close proximity to a toilet). I would dare to say that it was almost cathartic and after the end of all, in retrospect I had not felt my self so light in years. The procedure it self was not as bad or embarrassing as I thought. There were tens of people of all ages waiting for the same thing and it was a little reassuring that I was not the only one. I opted for sedation (for which you need to have an escort at the time of checking in on the day) and was lucky to have a good team of staff. I only felt some discomfort for about 5-7sec and upon saying something they re-adjusted; so say something if you have to.
One advice would be to not skip any amount of the prep. I was shown pics of how a bowel needs to look so that they can have full view and an obstructed view is not only a hit and miss in diagnosis but if they can’t see clear you may also have to be seen again and go through the whole thing.
Overall there was no discomfort or bleeding afterwards but I stuck to soups for a couple of days just to be on the safe side.
I asked and was told that there were not indications for polyps or malignancies but neither a gastroenterologist or my gp have contacted me since, so I am still chasing the next steps.
Good luck with the colonoscopy and wish you best results.
thank you - after the cramps I’ve been getting lately and when I was bleeding a few weeks ago I must admit I think I was dreading feeling that bad and doubled up with pain again so good to know that shouldn’t be the case. And I get what you mean - I’m hoping it might remove some of the bloating!
thank you. I wasn’t too great and the second dose of plenvu made me sick then the colonoscopy had to be stopped because I was in too much pain - very unusual apparently and they think it was connected to old scar tissue. They picked up proctitis and took lots of biopsy’s to test (no polyps) but couldn’t complete the final section so last week I went through it all again but with moviprep and a capsule colonoscopy - I tolerated the moviprep a lot better thankfully. I threw up the meds they give you after you’ve swallowed the capsule as well so they’ve noted that in case it tells the consultant anything. Now I just have to wait 2 weeks for the results and hope the camera saw everything it needs to 🤞🏻. I think the IBD goes beyond proctitis and might be more widespread as when I get symptoms they also make me sick and with horrendously bad reflux but my go forgot to send in the urgent referral unbelievably so I think further inflammation may have gone down by the time they got to do the tests but we’ll see. I’m having a lupus flare at he moment as well so getting a steroid injection for that tomorrow which always helps with my stomach as well so should be feeling better by the end of the week hopefully 🤞🏻
I can’t imagine how disappointing it was to have to go through it all a second time. 😬
I have had many colonoscopies over the years and I always feel dreadful for a couple of weeks afterwards. It’s got to the stage where I ask to have an MRI instead. My 83 yr old MIL had one and breezed through it, no issues at all!Guess it’s just a Crohns thing..🙄
Here’s hoping that the steroid injection works it’s magic on you for your Lupus & stomach issues and that you can enjoy the upcoming bank holiday.😊
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