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Hello
I’m just writting this post as lately I have been loosing a lot of weight as my swallow has started to pack up on me and they think I have gi dysmotility and gastroparesis. I was wondering if any one else has a peg or pej tube and if it has helped x
Thanks in advance x
Hello
I’m just writting this post as lately I have been loosing a lot of weight as my swallow has started to pack up on me and they think I have gi dysmotility and gastroparesis. I was wondering if any one else has a peg or pej tube and if it has helped x
Thanks in advance x
Hi Carrie, I know a lot of folks who use a peg or pej tube, but I’d love to see you avoid that if possible. Did you check out the treatment trial I’ll be starting for our gastroparesis/chronic constipation/delayed gastric emptying? I’d love, love, love to see you respond to this medication! 😉 I also wanted to mention that if you are having swallowing issues, some of us develop eosinophilic esophagitis. Did your docs check for that, perhaps? So sorry you’re going through this. 🙁 It sucks. Been there! Gastroparesis was one of my first symptoms, in fact. It is no fun, FOR SURE. Hang in, Hon… 🙂
I would love to be able to come to your trial but I’m live in London and just traveling to local hospitals wipes me out for days. Thanks so much tho I wish I could I really do. I am going in to hospital tomorrow for 2 endoscopies one either end I am totally petrified! They keep cancelling but hopefully tommrow it will all be done. I am still loosing weight though unfortunately. I think my bmi is now 13.8 I’m 5 ft 10 and weight is 44 kilos ish. I’m worried as more and more docs are talking about the tube but they think I have malabsorption so I don’t see what difference the tube will make now? X thanks so much for messaging me I’m sorry it’s taken so long to reply. In and out of hospital like a yoyo.
Thank you again xxx
Oh In reply to the oesophagus question they are sending me for manometry as yes I do have real issues swallowing and I choke it also goes up my noes x I know the test has a long weighting list which I feel is another reason they want to do the tube until they can test how well my oesophagus works x
I would love to be able to come to your trial but I’m live in London and just traveling to local hospitals wipes me out for days. Thanks so much tho I wish I could I really do. I am going in to hospital tomorrow for 2 endoscopies one either end I am totally petrified! They keep cancelling but hopefully tommrow it will all be done. I am still loosing weight though unfortunately. I think my bmi is now 13.8 I’m 5 ft 10 and weight is 44 kilos ish. I’m worried as more and more docs are talking about the tube but they think I have malabsorption so I don’t see what difference the tube will make now? X thanks so much for messaging me I’m sorry it’s taken so long to reply. In and out of hospital like a yoyo.
Thank you again xxx
Just speaking personally, the endoscopies were a piece of cake. No problems. I hope they are easy for you, too. I lost a lot of weight for a while, too, but it came back on suddenly (polycystic ovarian symdrome? We’re not sure). Are you on ketotifen? Huge help for my family, as were antihistamines. Hang in, Hon, When all of my research is out, I sort of see some tie in the UK in my future! 😉
Oh In reply to the oesophagus question they are sending me for manometry as yes I do have real issues swallowing and I choke it also goes up my noes x I know the test has a long weighting list which I feel is another reason they want to do the tube until they can test how well my oesophagus works x
Hon, did they rule out Eosophageal encephalitis with you? Just curious! 😉
Hi Carrie,
I’m up in Yorkshire, so like you, too distant to get to Dr Diana’s. I know a little of what you are going through, as I have intermittent swallowing issues, albeit not as severe as yours, although I couldn’t even initiate a swallow on one occasion which made me very anxious indeed, so I can appreciate how you must feel.I’ve had 2 swallow tests over the years but nothing showed up, of course it was sod’s law that I wasn’t symptomatic on either day. One of the Speech Therapists who the hospital had assigned to assess me (I don’t have any speech problems) way back in 2004, came to see me after the test and when I tried to describe it to her, she thought that maybe my palate wasn’t working properly at the back, though nothing further was done. So is that a muscular thing, an energy thing or a loose tissue thing, I just don’t know. I just knew, whatever it was, was affecting the top part of my throat in the swallow mechanism and led to me aspirating (breathing in) food and fluids. Lower down my throat I didn’t have much issues with swallowing (except the gastric reflux) but I guess gravity played a big part in that’s efficiency.
Anyway I’ve basically been ‘left to fend for myself’ and looked for methods to help me swallow. There was a technique taught to strengthen the muscles but this involved having the chin down (head in flexion) which was bad for me and worsened other symptoms, so I didn’t get far with that, then there was something called the supraglottic swallow but that can have complications, as the original version asked you to ‘bear down’ when you swallow but this, in many of us worsens the intracranial pressure, so you have to omit this part
Since then I have been working on ways to:-
1) Improve muscle function – CoEnzymeQ10 supplementation and also magnesium (important).
2) Increase energy at cell level – effervescent B Vitamin drink
3) Tighten up tissue laxity by helping build better collagen – effervescent C Vitamin drink (which, when taken with meals helps your body to digest the food in the stomach, thus aiding digestion – bonus!)The Zyrtec from the Z/Z protocol has probably helped too, by dealing with any allergic involvement. The Zantac (from the Z/Z) has helped control the gastric reflux. Some of this may be useful, or someone reading this in the future may find it helpful.
I wish you ‘All the Best’ in your procedures today, I have had cameras in both ends (although not on the same day) and they are not as bad as you fear.
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy); Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium) deficiencies, CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies; Myalgic Encephalomyelitis (M.E.) . . . . and now Growth Hormone Deficiency (due to flattened Pituitary Gland)!Great advice, Barb! I had to chuckle… My cameras were in both ends the same day. They may as well have done them simultaneously! Can you imagine what they’d see when the two meet? Ha. Please let us know how the swallowing is going! They *really* need to figure out if it is EoE or neurological or “something else”. But fending for ourselves? Wow, we have all done WAY too much of that! Heavens… 😉
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