I’m trying to avoid a biopsy of my Jejunum by double balloon endoscopy to diagnose Crohns/rule it out. It just so happens that I have developed ulcers on my tongue and a very sore throat; PCP checked for strep and covid- negative. PCP said it doesn’t look viral. PCP wants GI to consult with him on my case. I have an odd presentation for Crohns- 35 female with 10cm segment inflammation and thickening of proximal Jejunum. Onset of symptoms was 03/2021. Can my GI maybe biopsy my tongue??? And avoid this balloon procedure? Thoughts? Thank you!
Onset of tongue ulcers and throat pain prior to biopsy of Jejunum
- Thread starter Brandi111
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Hello,
I have suffered with ulcers in my mouth and on my lips for years, it was one of the first indicators of the major flare that lead to my diagnosis. My IBD nurse has since diagnosed me with oral Crohn's. It is fairly common for people with IBD to get sores in the mouth and even the throat, but I've only heard of one person getting it biopsied and that was only because her mouth was bleeding all the time and not responding to any treatments. Even if they agree to biopsy your tongue, it's highly unlikely it will be a substitute for other testing, as well as taking a biopsy of the jejunum your doctor needs to get a good view of it to make sure there aren't any worrying signs. I know these procedures are unpleasant and they can be scary, but your doctor wouldn't suggest it if they didn't think it was really necessary.
I have suffered with ulcers in my mouth and on my lips for years, it was one of the first indicators of the major flare that lead to my diagnosis. My IBD nurse has since diagnosed me with oral Crohn's. It is fairly common for people with IBD to get sores in the mouth and even the throat, but I've only heard of one person getting it biopsied and that was only because her mouth was bleeding all the time and not responding to any treatments. Even if they agree to biopsy your tongue, it's highly unlikely it will be a substitute for other testing, as well as taking a biopsy of the jejunum your doctor needs to get a good view of it to make sure there aren't any worrying signs. I know these procedures are unpleasant and they can be scary, but your doctor wouldn't suggest it if they didn't think it was really necessary.
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I know they can biopsy mouth ulcers but typically they use ones inside the lip or cheek .
Not sure what type of biopsy they would need
Punch biopsies are deep
I wouldn’t want that on the tongue
My kiddo has Sweets syndrome in addition to crohns
It was dx by biopsy but a skin lesion
We did not let them biopsy his mouth
I would get a second opinion Gi if your not comfortable with the jejunum Biopsy
Not sure what type of biopsy they would need
Punch biopsies are deep
I wouldn’t want that on the tongue
My kiddo has Sweets syndrome in addition to crohns
It was dx by biopsy but a skin lesion
We did not let them biopsy his mouth
I would get a second opinion Gi if your not comfortable with the jejunum Biopsy
Thank you so much. I guess I’m just so desperate I’m like oh this might work lol thank you for your input I understand why I would need to have them be able to view it anyways… and I’m not a candidate for pill cam due to possible strictures, so he will prob want to view it even more so. I’m very ill and desperate for treatment. Thanks again!
I’m just so desperate. I’m scared of the balloon procedure, but I’m running out of options minus a resection. Which I may end up needing anyways due to intermittent partial obstructions. My ESR and ANA came back normal from my appt Monday surprisingly. My white count was slightly low- which is odd for me. My labs were drawn 2 days before the onset of the ulcers and sore throat. I see the teaching hospital GI dept for consult on 08/19. Praying for answers and relief soon. Thank you so much for all of your help!
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I totally understand, I went undiagnosed for almost 5 years and by the time I knew what was wrong I was desperate for help and to just feel better, most of us here can relate to that in one way or another. It's really hard waiting for treatment when you're struggling but having a good idea of what's happening may help get the correct treatment straight away.
I am so sorry. I’ve never seen such a goose chase lol It is crazy. Looking back, I’ve had symptoms for around 6-7 years intermittently. But this March, I got sick and never recovered. It’s been very difficult. I’m ready to feel well again! Thank you!
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We have all been there
My kiddo started Gi issues at 2 weeks old
He wasn’t dx until age 7
His pediatrician told us he was just a skinny kid abd to get over it
Thankfully the Gi listened at age 7 and finally figured it out .
it’s really tough without a dx and even tough once you start meds but you will get there
My kiddo started Gi issues at 2 weeks old
He wasn’t dx until age 7
His pediatrician told us he was just a skinny kid abd to get over it
Thankfully the Gi listened at age 7 and finally figured it out .
it’s really tough without a dx and even tough once you start meds but you will get there
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I have had several ballon dilations in the past.
There is a risk of preforarion this can lead to emergency surgery, this ranges from 1-5%
They usually want steroids or infliximab first to reduce inflammation to reduce preforarion risk, however its low ish 1-5%
But on a positive note the feeling I felt after the ballon dilation was very nice, felt a lot better after.
I had one dilation last 2 years on one stricture, and another last ten years in on another, often they are a short term fix and don't last long sometimes just 2 months and narrowing is back.
Some steroids and infliximab and a ballon dilation can be a life changing bit of treatment in a lot of people, and day to day life becomes much better, with the chance to delay or avoid surgery.
I went about 12 years undiagnosed, remember being very young thinking how are all these people eating all these foods looking happy and smiley with no issues.
There is a newish procedure needle knife I think it's called, the chance to avoid surgery and a bit lower risk with longer lasting results via same tools and ballon.
The dream for strictures, would be an injection into the stricture tissue under endoscopy or colonoscopy, and the injection of medication enables the tissue to repair.
Hope you get well soon.
There is a risk of preforarion this can lead to emergency surgery, this ranges from 1-5%
They usually want steroids or infliximab first to reduce inflammation to reduce preforarion risk, however its low ish 1-5%
But on a positive note the feeling I felt after the ballon dilation was very nice, felt a lot better after.
I had one dilation last 2 years on one stricture, and another last ten years in on another, often they are a short term fix and don't last long sometimes just 2 months and narrowing is back.
Some steroids and infliximab and a ballon dilation can be a life changing bit of treatment in a lot of people, and day to day life becomes much better, with the chance to delay or avoid surgery.
I went about 12 years undiagnosed, remember being very young thinking how are all these people eating all these foods looking happy and smiley with no issues.
There is a newish procedure needle knife I think it's called, the chance to avoid surgery and a bit lower risk with longer lasting results via same tools and ballon.
The dream for strictures, would be an injection into the stricture tissue under endoscopy or colonoscopy, and the injection of medication enables the tissue to repair.
Hope you get well soon.
I agree 100 percent, after 2 balloon dilations the stricture went from 3 mm to 12mm to 15 mm....almost normal.
I got my life is back....I can eat whatever I want and no more blockages, no more cramps, no more vomiting....the only problem is that I am gaining weight too fast....!!!
After just the 1 dilation Crohns lessions almost dissapeared....I am wondering if this happened because of the balloon dilation.....maybe when food got stuck in the stricture bad bacteria proliferated there.
I tried finding a Doc that would do the needle knife surgery but its difficult to find one...I went to the local Cleveland clinic but they dont do it there....you have to travel to Ohio actually.
I just noticed that the post originator maybe was not talking about a balloon dilation but about a double balloon endoscopy??
I got my life is back....I can eat whatever I want and no more blockages, no more cramps, no more vomiting....the only problem is that I am gaining weight too fast....!!!
After just the 1 dilation Crohns lessions almost dissapeared....I am wondering if this happened because of the balloon dilation.....maybe when food got stuck in the stricture bad bacteria proliferated there.
I tried finding a Doc that would do the needle knife surgery but its difficult to find one...I went to the local Cleveland clinic but they dont do it there....you have to travel to Ohio actually.
I just noticed that the post originator maybe was not talking about a balloon dilation but about a double balloon endoscopy??
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I think your right kannassee, I have replied about the wrong ballon procedure.
Appears you can do a lot with ballons and crohns, who would have thought haha.
Are you on any medication kannassee before and after your ballon dilation ?
Appears you can do a lot with ballons and crohns, who would have thought haha.
Are you on any medication kannassee before and after your ballon dilation ?
When the Dr. found the stricture (and Crohns!!) with ulcerations etc he told me that he wanted me to start me on Remicade….I did not want to but he told me, no Remicade=no balloon dilation Lol so I started Remicade and also Prefnisone 20 mg for 2 weeks, after that 9 mg Budesonide and after a couple of months he did the first balloon dilation, after that 50 mg of prednisone for 2 weeks..…when he did the second dilation he also injected Kenalog into the stricture so no Prednisone!!!!…..I feel great now!!!….only on Remicade every 8 weeks…..I hope I will be able to stop that too if my calprotectin levels are low.
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Hmm you will need something to maintain the remission.
Elemental 028 or modulin ibd 25-50% and a food diet. These are medications just food medications and are specially formulated for crohns.
Or a biologic, have they not added azathioprine to your remicade so you don't get antibodies ?
To manage crohns without meds and on diet only I think would be very hard, the diet would almost have to be a spiritual or religious procedure very strict without slipping up, and there are a lot of distractions in the world.
Elemental 028 or modulin ibd 25-50% and a food diet. These are medications just food medications and are specially formulated for crohns.
Or a biologic, have they not added azathioprine to your remicade so you don't get antibodies ?
To manage crohns without meds and on diet only I think would be very hard, the diet would almost have to be a spiritual or religious procedure very strict without slipping up, and there are a lot of distractions in the world.
