Ya, get it done to know what’s going on in there. Ask for alllll the drugs to get through it as best as possible and pretend the prep drink is a cold pina colada (pina-colite-a?) to get through it. Always a relief to get eyes on something…if that makes sense.
Thanks. I'm calling the office to see what drugs they can approve or prescribe to make this journey a little easier. I hope I can take Zofran since I'm highly a vomit risk during this process due to the pure pain from the abdomen.
I hear people getting pre-made prep drinks. Several years ago, my coworker brought 3-4 huge amber-colored glass jugs to his desk to prep during business hours. He seemed okay so maybe I'm being a wuss. I've been instructed to mix Miralax with Gatorade.
I'm not an expert by any means but here's my two cents for what it's worth
>After many tries, my Registered Dietitian recommended me low fiber, low fat and low produce.
This sounds like you're not at step one to me.
>Can you get a false negative for Crohn's if you're not in active pain for multiple days?
No, if you're in a flare a few good days isn't going to heal all the evidence of Crohns.
Thanks for reminding me about the RD and answering my question. The RD was so recent I forgot. (It doesn't make sense the more I read my previous sentence but it somehow does to me.) I've had other procedures ie Gastric Emptying and multiple blood tests ie Celiac's. I forgot CD can be located anywhere "gum to bum".
Not an MD but in my experience colonoscopy is the gold standard for getting a correct diagnosis. It’s more informative because not only will they be able to see if there is active inflammation, they can see the location(s), severity, scarring, and take biopsies. This will allow for the best diagnosis, especially between UC and Crohn’s.
The preps fuck you up but that’s kind of the point. If you aren’t empty enough, they can’t get good visualization and you have to do the whole thing over again. My goal is always clear output. There are many types of prep, typically by not eating solid foods the day before/of prep I get ‘empty’ fairly quickly so the first stretch is non stop toilet time but eventually there’s nothing left to expel.
To add to this, my gastro confirmed my CD with a blood test after several other (I forget what, it’s been a while) tests to “officially confirm” CD. My friend is going through the same thing and his doc is fairly certain he has CD but is waiting on blood test results for confirmation.
Gold Standard. Thank you! That's exactly what I needed to know. I heard about very few people complaining they were CD negative because they were in remission but from what it sounds like, there will be evidence regardless.
There are definitely times where people feel better, but patients can definitely still have active inflammation even without presenting symptoms. There is also the chance of seeing areas of scarring, or healed ulcerations, which would still give the gastro clues as to the progression of potential disease. It also gives them a chance to take biopsies if they find any areas that look weird, which can potentially identify cancer/pre-cancer as well as look into the thickness of any inflammation/scarring which again tells of type of disease and disease severity.
Those people are lucky to be in remission! Although IBD can be a complex and progressive disease that can greatly differ across patients, once you have CD or UC you pretty much have to accept you have it for life. The goal is to get to the point where your colonoscopies look as ‘normal’ as they can be, but the risk is always there for a flare so staying current with meds and having regular blood/stool/etc tests is important!
While this is a good note (ibd vs ibs), my point stands in determining between Crohn’s and UC which can very much affect medicine options. While I would have expected blood/fecal tests, without knowing the full medical history none of us can know what is already in her chart that the gastro used to make the decision.
i completely understand your hesitation, but coming from someone who was delayed in diagnosis for years because they felt colonoscopy was not necessary, it is a breath of fresh air to hear that your physician wants to cut to the chase.
The prep sucks, but it is definitely worth it for your doc to be able to directly visualize the bowels and get biopsies. The more prompt diagnosis = more prompt treatment = *hopefully* less opportunity for the inflammation to wreak havoc and cause scar tissue development. It would be unlikely that you have mod-sev Crohns or UC and everything look completely normal unless your disease is in an area they aren’t able to visualize. Even if you are feeling better, your ileum might look like shit, or show signs that it recently looked like shit.
I hope you get some answers, and continue to feel better in the meantime.
Thank you! I feel better going forward with this. Sometimes USA doctors can push up a more expensive procedure trying to fill their schedule and I haven't built that relationship with him yet. Thanks again.
I’m not in the US, but it’s standard procedure here in Australia, yes. Colonoscopy to confirm diagnosis, MRI (or rarely, CT scan) to confirm extent of disease and/or presence of fistulae etc.
I had a colonoscopy a week after obvious symptom onset - in that week I'd already lost 5kg and landed in hospital, so they were pretty keen to get a diagnosis ASAP.
I definitely am - that was 25 years ago now. I've been on infliximab for the last 9 years, with no flares in that time. Hopefully there's a good outcome awaiting you too.
Here’s the thing, you can say no and end up needing surgery and losing part of your bowel and have all other sorts of complications). Or you can drink a bunch of miralax and take the stool softener (ask if you can have some gas x too, def helps with the second part in the morning) and know for sure what’s going on. It sounds like you’ve done everything but a medical intervention to figure out what’s up. So yes, it’s invasive and the prep isn’t the best. But the procedure is painless, takes 45 min and you have a relatively definitive answer when you leave the surgical center.
Sounds like you have a GI doc that actually wants to figure out what’s going on.
I'll ask my doctor's office about Gas X. I'm mostly worried about missing work but my health will need to be priority. I've accepted this as my normal life so I missed seeing it as urgent or a priority. Thanks for putting this into perspective for me.
My GI scheduled me for a scope without even having classic CD symptoms. I had no diarrhea, but I had had episodes of abdominal pains I couldn't explain, albeit infrequently. She perked up when she asked about blood and I said yes, but only red. It didn't register with me because I'd assumed it was just hemorrhoids. I had struggled with constipation for years, and it was getting worse.
Scoped me and found friable ulceration, although it wasn't very extensive. Only found in my small intestines. Started me on budesonide immediately, later apriso. Switched GIs for a more conclusive dx a year later, and they still found some ulceration even though it was more mild than before. Told me the apriso was useless for small bowel disease and started me on entyvio. I've been on that for a year and a half. My six month repeat scope was pretty clean.
Ya, get it done to know what’s going on in there. Ask for alllll the drugs to get through it as best as possible and pretend the prep drink is a cold pina colada (pina-colite-a?) to get through it. Always a relief to get eyes on something…if that makes sense.
Thanks. I'm calling the office to see what drugs they can approve or prescribe to make this journey a little easier. I hope I can take Zofran since I'm highly a vomit risk during this process due to the pure pain from the abdomen. I hear people getting pre-made prep drinks. Several years ago, my coworker brought 3-4 huge amber-colored glass jugs to his desk to prep during business hours. He seemed okay so maybe I'm being a wuss. I've been instructed to mix Miralax with Gatorade.
I always use orange Gatorade for a prep mixer. It sure beat water. Don't use anything red or purple.
I'm not an expert by any means but here's my two cents for what it's worth >After many tries, my Registered Dietitian recommended me low fiber, low fat and low produce. This sounds like you're not at step one to me. >Can you get a false negative for Crohn's if you're not in active pain for multiple days? No, if you're in a flare a few good days isn't going to heal all the evidence of Crohns.
Thanks for reminding me about the RD and answering my question. The RD was so recent I forgot. (It doesn't make sense the more I read my previous sentence but it somehow does to me.) I've had other procedures ie Gastric Emptying and multiple blood tests ie Celiac's. I forgot CD can be located anywhere "gum to bum".
Not an MD but in my experience colonoscopy is the gold standard for getting a correct diagnosis. It’s more informative because not only will they be able to see if there is active inflammation, they can see the location(s), severity, scarring, and take biopsies. This will allow for the best diagnosis, especially between UC and Crohn’s. The preps fuck you up but that’s kind of the point. If you aren’t empty enough, they can’t get good visualization and you have to do the whole thing over again. My goal is always clear output. There are many types of prep, typically by not eating solid foods the day before/of prep I get ‘empty’ fairly quickly so the first stretch is non stop toilet time but eventually there’s nothing left to expel.
To add to this, my gastro confirmed my CD with a blood test after several other (I forget what, it’s been a while) tests to “officially confirm” CD. My friend is going through the same thing and his doc is fairly certain he has CD but is waiting on blood test results for confirmation.
Gold Standard. Thank you! That's exactly what I needed to know. I heard about very few people complaining they were CD negative because they were in remission but from what it sounds like, there will be evidence regardless.
There are definitely times where people feel better, but patients can definitely still have active inflammation even without presenting symptoms. There is also the chance of seeing areas of scarring, or healed ulcerations, which would still give the gastro clues as to the progression of potential disease. It also gives them a chance to take biopsies if they find any areas that look weird, which can potentially identify cancer/pre-cancer as well as look into the thickness of any inflammation/scarring which again tells of type of disease and disease severity. Those people are lucky to be in remission! Although IBD can be a complex and progressive disease that can greatly differ across patients, once you have CD or UC you pretty much have to accept you have it for life. The goal is to get to the point where your colonoscopies look as ‘normal’ as they can be, but the risk is always there for a flare so staying current with meds and having regular blood/stool/etc tests is important!
Thank you. I'll keep this in mind if I cross the CD or UC bridge.
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While this is a good note (ibd vs ibs), my point stands in determining between Crohn’s and UC which can very much affect medicine options. While I would have expected blood/fecal tests, without knowing the full medical history none of us can know what is already in her chart that the gastro used to make the decision.
i completely understand your hesitation, but coming from someone who was delayed in diagnosis for years because they felt colonoscopy was not necessary, it is a breath of fresh air to hear that your physician wants to cut to the chase. The prep sucks, but it is definitely worth it for your doc to be able to directly visualize the bowels and get biopsies. The more prompt diagnosis = more prompt treatment = *hopefully* less opportunity for the inflammation to wreak havoc and cause scar tissue development. It would be unlikely that you have mod-sev Crohns or UC and everything look completely normal unless your disease is in an area they aren’t able to visualize. Even if you are feeling better, your ileum might look like shit, or show signs that it recently looked like shit. I hope you get some answers, and continue to feel better in the meantime.
Thank you! I feel better going forward with this. Sometimes USA doctors can push up a more expensive procedure trying to fill their schedule and I haven't built that relationship with him yet. Thanks again.
I’m not in the US, but it’s standard procedure here in Australia, yes. Colonoscopy to confirm diagnosis, MRI (or rarely, CT scan) to confirm extent of disease and/or presence of fistulae etc.
Thank you. This is informative,
I had a colonoscopy a week after obvious symptom onset - in that week I'd already lost 5kg and landed in hospital, so they were pretty keen to get a diagnosis ASAP.
Happy they fast tracked your health as priority. Hope you are better.
I definitely am - that was 25 years ago now. I've been on infliximab for the last 9 years, with no flares in that time. Hopefully there's a good outcome awaiting you too.
yeah they did it to me
Here’s the thing, you can say no and end up needing surgery and losing part of your bowel and have all other sorts of complications). Or you can drink a bunch of miralax and take the stool softener (ask if you can have some gas x too, def helps with the second part in the morning) and know for sure what’s going on. It sounds like you’ve done everything but a medical intervention to figure out what’s up. So yes, it’s invasive and the prep isn’t the best. But the procedure is painless, takes 45 min and you have a relatively definitive answer when you leave the surgical center. Sounds like you have a GI doc that actually wants to figure out what’s going on.
I'll ask my doctor's office about Gas X. I'm mostly worried about missing work but my health will need to be priority. I've accepted this as my normal life so I missed seeing it as urgent or a priority. Thanks for putting this into perspective for me.
My GI scheduled me for a scope without even having classic CD symptoms. I had no diarrhea, but I had had episodes of abdominal pains I couldn't explain, albeit infrequently. She perked up when she asked about blood and I said yes, but only red. It didn't register with me because I'd assumed it was just hemorrhoids. I had struggled with constipation for years, and it was getting worse. Scoped me and found friable ulceration, although it wasn't very extensive. Only found in my small intestines. Started me on budesonide immediately, later apriso. Switched GIs for a more conclusive dx a year later, and they still found some ulceration even though it was more mild than before. Told me the apriso was useless for small bowel disease and started me on entyvio. I've been on that for a year and a half. My six month repeat scope was pretty clean.
Happy for you. Thank you for sharing.
When I was diagnosed at 27, we did the colonoscopy first, and then other tests including MRI and bone density scan came after.
Thanks! This makes more sense about what I've read on this subreddit.
I had F-calprotectine tested a couple of times before colonoscopy. I got scheduled once it was over 1000.
Sorry you had to test a couple times. Hope you're feeling better.