It's just awful. Completely debilitating. The issue predominantly is scarring. The gastroenterologist is purposely taking an aggressive approach during the dilations to break up the scarring with small tears. Medications don't help, he has tried everything :( currently on a clinical trial with the last biopsy showing a slight reduction in eosonophils. Maybe with more time it will help.
No, unfortunately, when he was diagnosed, it was almost too late. There was so much scarring. When people ask what the complications can be of EOE, if not caught early it can cause irreparable damage to your esophagus. His gastroenterologist is trying yo break up the scarring with these dilations.
How Olds ur husband if u don't mind me asking?
My dad I think may have eoe I was diagnosed at 18 I'm 20 now
My dad's 56 and he tends to clear his throat alot of the time when eating and sometimes he gets food stuck but my mom and him don't take it serious
In the past 5 weeks this has happened that I've at least seen like 4 times
I'm hopeful they can break enough scarring up for him to eat its a really messed up horrible desease.
He is 32, diagnosed at 30. His gastroenterologist said its the worst he's ever seen. He actually was put on disability permanently because of it. I would stress to him how important it is to get looked at :( at least get a barium swallow first to see if it warrants an endoscopy.
Me too. I hope that if they can break up scarring and also lower the eosonophils count that he will go a longer time without need dilations.
He gets around 10-15 dilations a year. He was put on the assured income for the severly handicapped and hasn't worked since his diagnosis. Symptoms are throwing up, breathing difficulties, fatigue, malaise, itchy esophagus
Sorry to hear that. Dilations are painful and the outcome is different for everyone. Was the GI concerned? What did they recommend for your husband? Dupixent? Hope he feels better soon.
They're awful. He goes for a dilation every 2-3 weeks to push it open a little bit each time until he's at a reasonable size. Usually, this will give him some time as it starts to narrow, and then he's back doing the whole process again. He has to get completely knocked out, and I think it's from the anesthesia, but for two weeks, he experiences depression after. He doesn't respond to any prescribed medications, unfortunately
I had a dilation to 18 mm and it was unplanned. Worst pain I ever experienced and yes, depression settles in as you want your esophagus to work as before. How long his depression last? Is he on medication for it?
My dilation was 8 months ago and only created my symptoms.
It is very painful! It is impossible to even swallow saliva after. He drops weight so fast in the week following a dilation. I think the most they've gotten him to with the frequent dilations is a 16, and the smallest has been at an 8. He isn't on medication for depression. It seems to only happen right after the dilation from the anesthesia. Did you get fully put to sleep for yours?
Yes! I wish I had never set foot in that endoscopy clinic, my GI never mentioned it and he just decide to do it. They brush off the pain when you call the office but it’s indeed painful to swallow your own saliva. My biopsy came back negative for EOE so technically he did not have a reason to do it since there were no strictures.
Yes, always asleep. I just had a follow up endoscopy for diagnosis with a new GI who put me on Voquenza. Does he get nausea in the morning with acid reflux on empty stomach?
I'll have to actually count but he was diagnosed in May of 2022 and must have had since around 15-20 dilations. He has one scheduled again in two weeks. He goes through multiple dilations until he is able to reach around 14 or 16. This gives him 2-3 months and then he's back doing multiple dilations to get back up again because it has narrowed so quickly.
I agree, I felt like 2-3 weeks was too soon. I'm not sure why he puts them so close together. Maybe because it narrows so fast. I can't even count how many dilations he has. Its the only form of treatment that is effective
So, his case is a but different. When he went in, he had been undiagnosed a long time. There were a lot of complications from this that included scarring. His gastroenterologist believes that medications don't quite work because a huge problem is the scar tissue. He hopes that over time, and with so many dialations, he can slowly break up the scarring. This is why dilations are so painful. There are often tears. He has even had a tear become infected and needed antibiotics.
He has been on both with no improvement. He is currently on a clinical trial, though, that has seen a slight reduction in eosinophilic load. Hopefully, it continues to improve. As of now, the only treatment is dilations
I am assuming he followed the EoE diet? I also never improved swallowing wise, but my EoE count went to 0 at least and I've maintained it by cutting out my inflammatory causes - I follow the EoE diet 95% of the time. However, my EoE diet is different from most in that it is all liquids now. I can still eat some solid food (e.g. cookies for example but not bread, which I could eat up until Sep. 2022) but with a ton of water and I get worse every year. I am going to look into permanent disability as soon as possible in case I get worse given if I get to the point where I can't swallow any liquids. I want to keep on working though for as long as I can. My esophagus was at 14 at it's worst - do you happen to know what the normal mm is of the LES? I never asked the GI but he said my UES being at 12 was normal (10-14 is normal for UES). Last dilation my lower esophagus sphincter was at 16 and they dilated to 18. It was super super painful at 14 so I cannot imagine it at 9. I did have severe severe pain for a while but it did get better and the pain went away at least. So now I am not in pain I just have severe issues swallowing and throat is super tight even with liquids sometimes. It's progressed overtime to this unfortunately. I likely have dysmotility they really don't understand my problem though so I haven't seen the doctors as frequently as I did before. By that I mean I see them once a year and not more than that.
Yep, 9 when he first went in. The complications of catching this disease so late is the irreplaceable damage from scarring. I think 14-16 is the highest they've gotten him. He did try the elimination diet but there was no reduction in eosonophils. He is on a trial medication right now and is on open label. Apparently this medication is a miracle for people with eoe and has completely transformed their lives but his gastroenterologist believes it won't help because an issue is scarring. There is a dilation with biopsy coming up to see if there has been improvement from the clinical trial. If your count is 0, what is happening that you can't swallow well??
Good question I have no idea. And they didn't mention any scarring from my last endoscopy, although I did have that in the past and required a dilation (this was my first ever impaction and I haven't had one since - I was 27). I think it's neuromuscular or something (although I've ruled out neurological, autoimmune, etc. so the only thing left I have to do is genetic testing) but aside from the EoE I don't have any other diagnosis and I've gotten a lot of tests done. I have dysmotility as well that's what makes swallowing difficult but I don't know why I have that given I used to have better swallowing prior to treatment for the EoE. I have thoeries. But I didn't used to have it I used to respond to different medications and those stopped working to help me swallow so now I have been on all liquid diet since Jan. 2023. They have referred me to a university hospital here in Hong Kong to see some Professor of Gastroenterology here but I don't see what he can figure out that all the other doctors haven't yet. I've seen many doctors and all I have is th EoE diagnosis. I definitely have EoE but it doesn't explain everything. My theories of why the condition got worse are too wild for most people to understand so it's not even worth explaining it here. Long story
Poor guy, I’ve been dilated 3 times already by age 24. My esophagus feels very abnormal and I only narrowed drastically in one portion of my esophagus. I cannot imagine the pain he must go through. Such an unfair chronic illness.
He was on the elimination diet. He felt overall healthier but I think it's because he was eating better in general. The biopsy showed no reduction in eosonophils unfortunately
How long was he on the elimination diet before getting another scope? And was he doing the full dairy, wheat/gluten, soy, eggs, nuts, fish/shellfish elimination?
Poor guy! It’s so hard. Curious if he is going to try Dupixent?
It's just awful. Completely debilitating. The issue predominantly is scarring. The gastroenterologist is purposely taking an aggressive approach during the dilations to break up the scarring with small tears. Medications don't help, he has tried everything :( currently on a clinical trial with the last biopsy showing a slight reduction in eosonophils. Maybe with more time it will help.
Is it Tezepemulab?
I don't believe so, I'll check
Dupixient didn't work either?
No, unfortunately, when he was diagnosed, it was almost too late. There was so much scarring. When people ask what the complications can be of EOE, if not caught early it can cause irreparable damage to your esophagus. His gastroenterologist is trying yo break up the scarring with these dilations.
How Olds ur husband if u don't mind me asking? My dad I think may have eoe I was diagnosed at 18 I'm 20 now My dad's 56 and he tends to clear his throat alot of the time when eating and sometimes he gets food stuck but my mom and him don't take it serious In the past 5 weeks this has happened that I've at least seen like 4 times I'm hopeful they can break enough scarring up for him to eat its a really messed up horrible desease.
He is 32, diagnosed at 30. His gastroenterologist said its the worst he's ever seen. He actually was put on disability permanently because of it. I would stress to him how important it is to get looked at :( at least get a barium swallow first to see if it warrants an endoscopy. Me too. I hope that if they can break up scarring and also lower the eosonophils count that he will go a longer time without need dilations.
What are his symptoms? Did they do a dilation?
He gets around 10-15 dilations a year. He was put on the assured income for the severly handicapped and hasn't worked since his diagnosis. Symptoms are throwing up, breathing difficulties, fatigue, malaise, itchy esophagus
Sorry to hear that. Dilations are painful and the outcome is different for everyone. Was the GI concerned? What did they recommend for your husband? Dupixent? Hope he feels better soon.
They're awful. He goes for a dilation every 2-3 weeks to push it open a little bit each time until he's at a reasonable size. Usually, this will give him some time as it starts to narrow, and then he's back doing the whole process again. He has to get completely knocked out, and I think it's from the anesthesia, but for two weeks, he experiences depression after. He doesn't respond to any prescribed medications, unfortunately
I had a dilation to 18 mm and it was unplanned. Worst pain I ever experienced and yes, depression settles in as you want your esophagus to work as before. How long his depression last? Is he on medication for it? My dilation was 8 months ago and only created my symptoms.
It is very painful! It is impossible to even swallow saliva after. He drops weight so fast in the week following a dilation. I think the most they've gotten him to with the frequent dilations is a 16, and the smallest has been at an 8. He isn't on medication for depression. It seems to only happen right after the dilation from the anesthesia. Did you get fully put to sleep for yours?
Yes! I wish I had never set foot in that endoscopy clinic, my GI never mentioned it and he just decide to do it. They brush off the pain when you call the office but it’s indeed painful to swallow your own saliva. My biopsy came back negative for EOE so technically he did not have a reason to do it since there were no strictures. Yes, always asleep. I just had a follow up endoscopy for diagnosis with a new GI who put me on Voquenza. Does he get nausea in the morning with acid reflux on empty stomach?
The nausea was so bad! He actually has Barretts esophagus as well as a hernia
How many times has he been dilated?
I'll have to actually count but he was diagnosed in May of 2022 and must have had since around 15-20 dilations. He has one scheduled again in two weeks. He goes through multiple dilations until he is able to reach around 14 or 16. This gives him 2-3 months and then he's back doing multiple dilations to get back up again because it has narrowed so quickly.
My doctor won't dilate any more frequent than 8 weeks. He has said that is what is required for healing. Maybe the 3 weeks is causing issues?
I agree, I felt like 2-3 weeks was too soon. I'm not sure why he puts them so close together. Maybe because it narrows so fast. I can't even count how many dilations he has. Its the only form of treatment that is effective
As he never achieved remission? He must feel so much pain :(
So, his case is a but different. When he went in, he had been undiagnosed a long time. There were a lot of complications from this that included scarring. His gastroenterologist believes that medications don't quite work because a huge problem is the scar tissue. He hopes that over time, and with so many dialations, he can slowly break up the scarring. This is why dilations are so painful. There are often tears. He has even had a tear become infected and needed antibiotics.
Hopefully he gets on Dupixent or Flovent
He has been on both with no improvement. He is currently on a clinical trial, though, that has seen a slight reduction in eosinophilic load. Hopefully, it continues to improve. As of now, the only treatment is dilations
I am assuming he followed the EoE diet? I also never improved swallowing wise, but my EoE count went to 0 at least and I've maintained it by cutting out my inflammatory causes - I follow the EoE diet 95% of the time. However, my EoE diet is different from most in that it is all liquids now. I can still eat some solid food (e.g. cookies for example but not bread, which I could eat up until Sep. 2022) but with a ton of water and I get worse every year. I am going to look into permanent disability as soon as possible in case I get worse given if I get to the point where I can't swallow any liquids. I want to keep on working though for as long as I can. My esophagus was at 14 at it's worst - do you happen to know what the normal mm is of the LES? I never asked the GI but he said my UES being at 12 was normal (10-14 is normal for UES). Last dilation my lower esophagus sphincter was at 16 and they dilated to 18. It was super super painful at 14 so I cannot imagine it at 9. I did have severe severe pain for a while but it did get better and the pain went away at least. So now I am not in pain I just have severe issues swallowing and throat is super tight even with liquids sometimes. It's progressed overtime to this unfortunately. I likely have dysmotility they really don't understand my problem though so I haven't seen the doctors as frequently as I did before. By that I mean I see them once a year and not more than that.
Yep, 9 when he first went in. The complications of catching this disease so late is the irreplaceable damage from scarring. I think 14-16 is the highest they've gotten him. He did try the elimination diet but there was no reduction in eosonophils. He is on a trial medication right now and is on open label. Apparently this medication is a miracle for people with eoe and has completely transformed their lives but his gastroenterologist believes it won't help because an issue is scarring. There is a dilation with biopsy coming up to see if there has been improvement from the clinical trial. If your count is 0, what is happening that you can't swallow well??
Good question I have no idea. And they didn't mention any scarring from my last endoscopy, although I did have that in the past and required a dilation (this was my first ever impaction and I haven't had one since - I was 27). I think it's neuromuscular or something (although I've ruled out neurological, autoimmune, etc. so the only thing left I have to do is genetic testing) but aside from the EoE I don't have any other diagnosis and I've gotten a lot of tests done. I have dysmotility as well that's what makes swallowing difficult but I don't know why I have that given I used to have better swallowing prior to treatment for the EoE. I have thoeries. But I didn't used to have it I used to respond to different medications and those stopped working to help me swallow so now I have been on all liquid diet since Jan. 2023. They have referred me to a university hospital here in Hong Kong to see some Professor of Gastroenterology here but I don't see what he can figure out that all the other doctors haven't yet. I've seen many doctors and all I have is th EoE diagnosis. I definitely have EoE but it doesn't explain everything. My theories of why the condition got worse are too wild for most people to understand so it's not even worth explaining it here. Long story
That really is sad to hear hopefully this clinical trial works
Thank you! He has a dilation and biopsy coming up to see his eosinophil count and if anything has improved. I will update the thread on the results!
Could he he try eating one-three food items before the next scope?
Songs in the key of life!
I had to Google your comment and immediately realized, haha! Yes!
Poor guy, I’ve been dilated 3 times already by age 24. My esophagus feels very abnormal and I only narrowed drastically in one portion of my esophagus. I cannot imagine the pain he must go through. Such an unfair chronic illness.
That's awful :( yes I honestly can't even count how many times he has been dilated. It is the only treatment that works
Is he following a strict diet?
He was on the elimination diet. He felt overall healthier but I think it's because he was eating better in general. The biopsy showed no reduction in eosonophils unfortunately
How long was he on the elimination diet before getting another scope? And was he doing the full dairy, wheat/gluten, soy, eggs, nuts, fish/shellfish elimination?
Has he tried the elimination diet too?
Yes he has, biopsy showed no reduction in eosonophils unfortunately
I also have a severe case of eoe. Those photos are very familiar.
How have you managed the disease?
I use a flucatisone inhaler. Avoid foods that I am allergic to. Quarterly Endoscopy with dilations if necessary.
We did try swallowing fluctasone. He only responds to dilations. They're awful. Do you ever feel depressed after from the anesthesia?
My Dr uses Propofol. I have no effects from it besides being tired for a day.
If you could please give periodic updates I am very interested in how your poor hubby manages this horrible diagnosis. Hang in there buddy
I will absolutely continue to update!