Endoscopy today
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Sunshine, I'm glad nothing obvious was found on your EGD. It sounds like there is some kind of spasming going on. Hopefully the doctor can do something for that. I hope you receive good biopsy results.
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Wallycat, he did dilate my esophagus - I think the lower part, but I'm not sure.
I'm glad you can wait 3-5 years. Fingers crossed on the biopsies.
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Hey Carol Was wondering how you made out, glad to hear it's finally completed! I was thinking at least it confirms all the spasms you have been dealing with and the narrowing you feel. Crossing my fingers for negative results and hoping you feel a difference with the possible dilatation.
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I heard from the GI doc last night - all biopsies benign and normal.
The esophagus was so tight he had to switch to a small scope. He was able to dilate it some but not to normal. He was able to safely get it to 12mm (normal is usually >15mm). He offered to dilate again if my swallowing problems persist.
Still have trouble with coughing/phlegm at night. Will use the wait and see approach.
Thank you for checking on me! I hope everyone has a good Friday and a good weekend.
Carol
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Sunshine, that is great that they were able to dilate and hopefully give you some relief. YAY on b-9 and normal!
I made an error…just got my report and the pill is 12.5mm and he said if that goes down, then considered no strictures. It did indicate mild to moderate tertiary spasms. No reflux on exam.
Here's hoping we can forget about our throats!
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Amen to that, wallycat. I want to enjoy eating again. Actually, I enjoy the eating, just not the aftereffects.
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Great news Carol!
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Sunshine, Glad the biopsies were benign and the doctor managed to dilate the esophagus some.
For the coughing, have you tried elevating the head of the bed with bricks/concrete blocks or using a wedge pillow? I liked the elevated bed but DH slid down too much so I went with the wedge pillow. Also, sleeping on your left side minimizes the microaspiration of gastric acid. I used to have trouble staying on that side but the nerve pain from radiation on my right side now wakes me up if I roll over. While this keeps my gastroenterologist and pulmonologist happy I wouldn't recommend it as a solution. Pillows, maybe?
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I did order a wedge pillow. It should come tomorrow. I just feel bad for DH with all my coughing and tossing and turning. He's sweet about it and says it doesn't bother him. He's the type where his head hits the pillow and he's snoring within 3 minutes. Must be nice…
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My DH is the same way. A few other things to try for reflux or healing the esophagus are DGL and D-limonene. Consumer labs had someone comment they totally healed their esophagus using the D-limonene. It's a big pill but gel, so slides down OK. Aloe Vera has also been mentioned for healing though I don't know if any of this is helpful if you don't have active reflux.
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My routine gastro appointment seems to have made me sick. I always deal with C/D fluctuations as side effects from iron for anemia but yesterday was something else. My local palliative doc diagnosed me with C. difficile (stool test) and prescribed vancomycin, electrolytes and probiotics. I'm not currently taking antibiotics and no procedure was done but he claims the timing is right and c. diff can be picked up from surfaces, a provider or a carrier patient. The GI department at the big hospital is huge; I take PPIs and am somewhat immunocompromised from high dose inhaled steroids so I guess this makes sense.
They are trying to treat me at home so I am taking my own vitals and have taken over one bathroom for myself. I could stand to lose a few pounds but this is not the way to do it. Ugh!
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Oh, maggie, I'm so sorry. I hope you start to feel better soon.
I have a temp today. Up to 101 degrees. I'm taking Tylenol to bring it down.
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Hope you ladies feel better. C.Diff is yucky. If it continues, I hope your doc knows about fecal transplants.
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Sunshine, the twilight anesthesia sometimes causes a fever. You should call the doctor if it persists. I hope you feel better soon.
I'm running a fever but have been told to take no meds for it or the D. I guess the goal is to get the bacteria out of your system. I'm keeping up with the fluids since my bathroom is nicer than the hospital's.
Thanks, Wallycat. My palliative doc told me he would send me back to my gastro if I wasn't OK in two weeks. When I asked him how I would manage the 100 mi drive to the big hospital he just laughed. My daughter worked there as a transplant research assistant when she first graduated from college. Her job was performing skin grafts on animals but she had to attend seminars on all their research including fecal transplants.
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The fever is down this morning, and I was feeling better until I took my Ibrance. I could feel my esophagus tightening up. I took a few very tiny sips of coffee and ended up with the excess mucus. Now, I'm vomiting up mucus and bile. Yuck!
This is stupid!
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Sunshine, It seems that the dilation hasn't solved the problem. I'd contact the GI doctor right away and ask about antispamodic meds or (ugh) more dilation. You need to keep the Ibrance down. Is the fever gone?
Still in the bathroom too much and cleaning like the beginning of covid when that was the recommendation. Hoping it gets better within a week (the doctor's best case scenario.)
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The fever is down, and it doesn't look like the Ibrance came up. I think I will contact the GI doc on Monday and ask his opinion.
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I'm sorry to hear you may have C-Diff, Maggie. I had it back in 2913. Mine was caused by my dentist giving me an antibiotic called Clindamycin, which is banned in many countries because it kills all your good gut bacteria. That allowed C-Diff to overgrow in it's place.
I'm surprised they didn't do a fecal test to either confirm or rule out C-Diff. Vancomycin is a very expensive treatment. About $20,000 a course back then. I ended up having seven courses of Vancomycin over a one year period of time before it finally cleared up. And I don't think it was the Vancomycin.
I believe what finally helped me was eating anything and everything that would help my good gut bacteria to knock back the C-Diff. That included 5 different probiotics (including Florastor), eating sauerkraut, kimchee, yogurt, kefir and most importantly raw, organic, unwashed fruits and vegetables. Fresh from your own garden is best.
Don't mean to be a Debbie downer, and hopefully you don't have C-Diff. But if you do, I hope it clears up quickly. It was a miserable experience for me.
Trish
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Trish, Thank you for your advice. The doctor did do a fecal test to confirm; otherwise insurance wouldn't cover the Vancomycin.
I took Clindamycin and Bactrim DS more than two years ago for osteomyelitis of the jawbone but nothing happened then (I took tons of probiotics and ate yogurt at every meal.) This is most likely unrelated since so much time has passed. I probably picked it up during a GI appointment at another hospital the week before I got sick. My doctor called and they confirmed the presence of a patient who recently recovered from c. diff at about the same time as my appointment. They said they always disinfect thoroughly but I was not the only one who developed a new infection. They have done a super cleaning of the area but too late for me.
It really is miserable. The fact that you recovered gives me hope.
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I tried to leave a comment but don’t see it. I can’t keep any sips of water down so will be calling the GI doc in the morning. This sucks! And I was so looking forward to my chicken tortilla soup today!
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I'm so sorry you actually have C-Diff, Maggie. It really was a miserable time for me. It sounds like you're much more knowledgeable about how the antibiotics affect your gut biome than I was. I had no clue about the need to take probiotics to head off the overgrowth. I do now.
I hope your proactive measures help the Vancomycin knock it back asap.
Good luck.
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Sunshine, I just did a quick pubmed search and found a few abstracts that indicate Ibrance might cause inflammation of mucosa…lungs and possibly esophagus. Could you have developed an allergy to it?
I can locate the articles again if you wanted to print anything for your onco and Gi docs.
Best to you ladies.
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I’m in the Urgent Care getting IV fluids and Zoltan. Had a chest X-ray and a CT scan. Now waiting for the doctor to come back in.
i lost 4 pounds since last night and the on call doc was concerned about dehydration, etc. Am expecting to go home tonight.0 -
Zofran not Zoltan. Darn auto fill! 😝
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Sunshine, I'm glad you're getting IV fluids. I'm still losing water but at least I can replace it.
As Wallycat mentioned you can have a swallowing problem from an allergy to Ibrance. The chest CT should show any signs of drug induced ILD (could be causing the cough.) If there is something off in your lungs on the CT and the radiologist doesn't recognize the cause send a copy to your MO. When I developed radiation induced pulmonary fibrosis (a type of ILD) the local doctors had no idea what was wrong; my RO knew what it was right away and sent me to a specialty pulmonologist
I hope they can get this figured out quickly.
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This is very interesting. I'm not going to take my Ibrance this morning because I'm afraid of setting off the vomiting again. I'll message my MO.
They took good care of me last night and I came home and slept well. CT showed new areas of ground glass opacity. Sheesh, I now have such a list of doctors, I don't know who to call.
Still, am thankful to be able to swallow this morning without coughing/vomiting.
C-dif sounds like fun! (NOT!) They did test me for COVID and influenza A & B - all negative, thankfully.
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Sunshine, I'm glad you are contacting your MO. I imagine they have a pulmonologist and radiologist to consult with. Ground glass opacity is one of the early signs of ILD caused by Ibrance. At that stage stopping the drug is often enough to clear it up. According to the AE toxicity charts re-challenging after it clears up is an option. I ended out with stage 3/4 ILD AEs so am lucky to still be here. Because of that I have learned way more about ILD than I ever wanted to know. My PCP, the radiologist and local pulmonologist didn't recognize it because they never see it. Your MO could also address the possibility of an allergic reaction.
It's good that you are home from the hospital and able to sleep and swallow. I wouldn't wish nocturnal symptoms on anyone but last night it felt a bit better having company.
Thanks for the update. I hope they figure out what is causing all your symptoms.
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Just checking in to see how you ladies are doing….hopeful things are improving.
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Wallycat, Thanks for checking. I'm about the same but hoping I'll see improvement after about a week on the meds as the doctor hopes. At least I can replace all the fluids I'm losing.
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I'm going to stop the Ibrance for two weeks and then see my MO via a video visit. Waiting to schedule the motility study. I'm supposed to call them today or tomorrow.
Hope everyone is doing OK this morning. I'm trying to drink a little more (water - LOL) today. I have a venti Starbucks cup that holds 24 ounces. Will try to drink two of them. Soup for lunch and an Ensure or two.
MO said it was OK to hold the Ibrance for two weeks. I feel like it really exacerbates the esophageal spasms. I have a video visit with her in two weeks to discuss my meds.
I feel like I have an embarrassingly long list of doctors and specialties. I thought it was bad when I was diagnosed with Stage IV and suddenly had not one, but three different oncology docs. Now, I've added neurology, neurosurgery, pulmonology, gastro and probably more I can't even remember right now.
Sheesh…
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