• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Trouble Swallowing

I'm new here so please bear with me if I accidentally say something I shouldn't. I've had Crohn's disease (CD) since sometime in the 80s. It wasn't correctly diagnosed until 2006, but I know it goes way back because the symptoms were identical. My CD has always been located at the stomach outlet, which is why it was so hard to diagnose. They always told me I had ulcers & I had three "ulcer" surgeries before I was finally diagnosed with CD. Basically, the stomach outlet would become so inflamed that it swelled shut & nothing would pass through. I remember one time way back when they took a barium x-ray to find out what was going on in my stomach. When I swallowed the barium solution, all they saw was a cloud of barium dissipate into a totally full abdomen - nothing had been passing through, and so the whole abdomen was full of liquid. Anyway, fast forward to 2006 when I kept blocking up again & I got a new GI doc. He went in with an endoscope, and did a balloon dilation of the outlet. It was very successful - for about a week, and then I was blocked up again. This cycle repeated for about four weeks, and he finally said that continuing on that way wasn't practical, so he suggested surgery. It was basically bariatric surgery - same as they do for weight loss, though I didn't have a weight problem. The surgery went poorly, but long story short, it solved that particular problem. In place of a blocked outlet, I now had chronic anemia, continued weight loss, near constant nausea, and multiple other problems that have made life miserable. After a year I had to go on medical retirement (I was 62 at the time, so early retirement that I didn't exactly desire). Fast forward to now, I'm 71 years old, and struggling with multiple problems & life "ain't easy". I went on a sequence of biologics (I have RA in addition to CD), starting with Enbril, then Humira (maybe the other way around?), and now Cimzia. I had thought I was in remission until just tonight when I had a thought that scared the crap out of me. I've been having increasing trouble swallowing over the last month or so, and the thought struck me a couple of hours ago that it might be related to CD. That's what brings me here at 2 am, looking for answers. The details of the swallowing are strange. I don't especially have trouble when swallowing food or liquids - except when I try to swallow the natural secretions that occur in our mouth all the time - the saliva, or other very small volumes of liquid. I feel the need to swallow, but I can't seem to get it started, while the volume seems to increase & I sort of get panicky. Sometimes after 5-6 unsuccessful attempts, the reflex will kick in and I finally swallow - problem solved for that time. In the midst of that struggle, if I take a quick drink of water or whatever, the swallow reflex triggers and I'm OK. But, there's always that little bit of fluid that doesn't get swept up in the act, and remains. The follow-up swallow puts me right back where I started. I initially blamed this problem on the opioids that I take regularly (RA, broken bones, osteoporosis, etc., - long story). But my pain management team doesn't seem to recognize that as something they see in others. This evening I started wondering if something else might be going on, and whether I should see my PC docs for the problem. Then just about bedtime, the connection to CD hit me & so here I am.

Any advice? Anyone else experienced this strange kind of symptom? I'm starting to really worry whether this might continue on, or get progressively worse. It's only a very frustrating bother right now, but if it progresses, I feel like I could be looking at the end unless someone has a miracle up their sleeve.

Sorry if I've bored you all - please pass any comments along - helpful or otherwise. Thank you!
 
Welcome. I am sorry for what you are going through. I have had trouble sometimes choking on food. It helped me some when they switched me to protonix. You might ask your doctor about this. You also might ask him about a swallow test. I hope you are better soon. Keep us updated.
 
Welcome. I am sorry for what you are going through. I have had trouble sometimes choking on food. It helped me some when they switched me to protonix. You might ask your doctor about this. You also might ask him about a swallow test. I hope you are better soon. Keep us updated.
Hi I’m having a strange time ... resection 2014 ..diagnosed 2013.. 51 yrs young now... last 6 months random choking ... always takes 3 hrs stuck in throat (meat)1 trip to a&e for me to swallow it upon reaching triage( mouth filling with saliva I can’t swallow)... endoscopy last year had a result given over phone of small hernia(fine).... this yr being called in for results??.... pretty worried... any thoughts????
 

Trysha

Moderator
Staff member
Perhaps you should check in with the GI...someone needs to investigate the problem.
When i experienced esophageal narrowing the GI expanded it...worked very well and thats over a year ago.
It all depends on the cause...but you should not let it continue....get the experts to investigate.
So sorry that you are suffering so much
 
Perhaps you should check in with the GI...someone needs to investigate the problem.
When i experienced esophageal narrowing the GI expanded it...worked very well and thats over a year ago.
It all depends on the cause...but you should not let it continue....get the experts to investigate.
So sorry that you are suffering so much
Thanks for reply Trysha..... have an appointment in Tuesday (thank god) will give you update
 

Honey

Moderator
Staff member
Hi there, hope your appointment with your Consultant goes well and you get some answers to your swallowing problem. I did suffer that years before Crohns was diagnosed. I had Para thyroidism and had to have surgery. I hope you feel better soon.
 
Hi there, hope your appointment with your Consultant goes well and you get some answers to your swallowing problem. I did suffer that years before Crohns was diagnosed. I had Para thyroidism and had to have surgery. I hope you feel better soon.
Hi honey & trysha.... well attended appointment today, I have esophageal chrons and s stricture.... very rare ,on investigation apparently... 2% of the chrons population are effected... would love to know if there are many on here diagnosed with same?... are going to start me on an oral steroid spray(to be swallowed) and nexium... review in 8 weeks with the hope inflammation has gone down... if not a possible dilation may be needed.. consultant today found it strange ...1st, no sign of any inflammation on last endoscopy last year and bloods done 3 months ago were fine and secondly that I’m even on Simponi (100mg) monthly????.... you’d think I’d prescribed it to myself.???.. so now going to give me FULL review... all bloods, colonoscopy ( which I haven’t had in 3 years,even though I’ve asked) and mri... thanks again for both your concern
 

Honey

Moderator
Staff member
HI there, glad to hear they have found the cause of the problem. You always feel better when you know , and hopefully your medication will alleviate the symptoms soon. Get well soon.
 

Trysha

Moderator
Staff member
Its good to know whats going on even though we may not like the end result.
As you say this is a rare area for crohns...although crohns can attack anywhere
in the body.
It is a relief to get diagnosed and treated....lets hope it will swiftly respond to treatment.
Its good that you will have a full review of your system...hope the crohns goes into remission with appropriate treatment
 
Its good to know whats going on even though we may not like the end result.
As you say this is a rare area for crohns...although crohns can attack anywhere
in the body.
It is a relief to get diagnosed and treated....lets hope it will swiftly respond to treatment.
Its good that you will have a full review of your system...hope the crohns goes into remission with appropriate treatment
Thanks again trysha.... annoying thing is, in May of this year I asked was I in remission and answer was yes???.albeit medically reliant 🤷‍♀️
 

Trysha

Moderator
Staff member
Trouble is that crohns is one of the sneakiest conditions to endure.
Some doctors are miracle workers but in the end they are also people like ourselves and at times can be at a loss
of knowing what next to do .
Quite often they come up with something to help.
Something to be thankful for..
Not easy to tolerate the slings and arrows of crohns.
Feel better soon
 
Trouble is that crohns is one of the sneakiest conditions to endure.
Some doctors are miracle workers but in the end they are also people like ourselves and at times can be at a loss
of knowing what next to do .
Quite often they come up with something to help.
Something to be thankful for..
Not easy to tolerate the slings and arrows of crohns.
Feel better soon
Hi again everyone.... meant to say earlier,.. I’ve been put in an inhaler, Filixitide 200...4 puffs twice daily (to be swallowed)and nexium 40mg twice daily... I’m on inhalers already for asthma( salamol and seritide 250)... very strange trying to swallow rather than inhale I can tell you... but hey ho.. if it works it works
 
Hi again everyone.... meant to say earlier,.. I’ve been put in an inhaler, Filixitide 200...4 puffs twice daily (to be swallowed)and nexium 40mg twice daily... I’m on inhalers already for asthma( salamol and seritide 250)... very strange trying to swallow rather than inhale I can tell you... but hey ho.. if it works it works
Hi again received blood results today (taken day of diagnosis of esophageal crohns) and guess what????..... as I suspected... absolutely fine ... no raised esr or crp????.... answer me that.... asked nurse how that could possibly be?????.... answer.. no idea
 
Hi again received blood results today (taken day of diagnosis of esophageal crohns) and guess what????..... as I suspected... absolutely fine ... no raised esr or crp????.... answer me that.... asked nurse how that could possibly be?????.... answer.. no idea

That's not all that unusual. Mine inflammation markers weren't elevated when I was diagnosed either. Those markers aren't always very sensitive and just don't work for some people. According to one publication I read about 15% of all Crohn's patients never have an elevated CRP.
 
just a guess, but you could have temporary nerve damage from a prolonged b12 deficiency. I recall having a similar symptom when I was first diagnosed, try a sublingual b12 supplement adenosylcobalamin. I buy my supps from iherb-

https://www.iherb.com/pr/Country-Life-Active-B12-Dibencozide-3000-mcg-60-Lozenges/1637?gclid=EAIaIQobChMI1czEv5KN5AIVYxh9Ch1eLwr6EAYYBCABEgLhZPD_BwE&gclsrc=aw.ds
Hi wildbill... not sure if the above reply was for me??... if so I actually get b12 injections every guarter And also take folic acid daily as terminal ileum was removed+appendix
 
Top