I didn’t know what to title this. My surgery was April 29th, I ended up in the ER the day after my release from the hospital with pneumonia, critically low potassium and acute UTI. I was also diagnosed with esophageal dysphasia. Because of that my follow up appointments got thrown off course. I had two appointments close together. The second appointment he had me go for a upper gi fluoroscopy and endoscopy. Which found stoma stricture, Schatzki ring, sliding hiatal hernia and ulcers.

TBH after the endoscopy I didn’t want to schedule my next follow up appointment. And the doctor hadn’t said when. It should have been 2-3 months post-op but it’s almost 4 1/2 months. I see my surgeon on Thursday and because I need medical transportation it turns into practically an all day affair. I am actually dreading this appointment.

He is a great surgeon but my communication skills, especially when I’m fatigued are sorely lacking. I’m at a loss what to say since I feel like I can’t do anything right. While yes my weight has gone down (rather slow) and I think I’ve hit around 53lb loss - I haven’t been able to progress in certain things and have to keep my calories very low otherwise I stall.

Due to the esophageal dysphasia I’m not drinking a lot of water. I haven’t attempted purées again and should probably even be into regular foods by now. The most I’ve been able to manage is yogurt mixed with protein powder for breakfast (sometimes a shake) cottage cheese, BariatricPal protein soup (if I have any) juice flavor protein mixes, and sometimes soft boiled egg but I get kind of sick from it so not too often. It’s more an allergy thing with that.

My surgeon never really said anything after the endoscopy. I read on the results that he balloon dilated the stricture which it seems to me he did it too much at once and I don’t feel better. The fluoroscopy showed it at 3mm and he dilated 10mm and assumed it was ok because the scope passed? I find it perplexing. And maybe they think the other issues too minor? I don’t. I don’t want to be stuck on proton pump inhibitors. They cause constipation and are not safe long term for things like magnesium, bone density etc. which I have enough bone density loss as is.

I told My gastroenterologist about new issues with this of course they said talk to the surgeon and also my PCP. I’ve been having crushing chest pain. And weird strong spasms below my ribs on the left side. Of course I forgot to mention it to my PCP I was too annoyed by her attitude when I caught her up on the surgery and everything after it (she was on maternity leave a few months) well that’s a long story I won’t bore anyone with.

My gastroenterologist scheduled me for a colonoscopy the end of this month to rule out possible colitis (a ct scan result said colitis) I was supposed to have had it before my RNY but it didn’t work out that way. I’m not sure how I’ll manage prep. They gave me a prescription for one that is less to drink but I’m allergic to it. Ill have to do clear liquids two days prior to the colonoscopy. Does clear protein count as a clear liquid or do I not have protein? I’ve had colonoscopies before but this is my first after RNY.

Also. I have endometriosis and it’s possible he won’t see the problem in the colonoscopy since that won’t show up if it’s on the outside. I worry it won’t answer the problems there. As for endometriosis. I saw my uro/gyn because of hemorrhagic cysts on my one remaining ovary. Which also has endometriosis on it. I guess it’s time to have it out now and I’m scheduled for that October 14th. Which means .............. menopause. But I’m hoping it will ease the endometriosis and pcos symptoms. He had removed my other ovary that was covered with endometriosis during other procedures he was doing at the time. I’m too chicken to ask him about an issue with one of the other procedures he did.

Just like my follow up with my bariatric surgeon. I’m at a loss what to say and when I’m exhausted I lose my words. Also doesn’t help that I speak to several people before he enters the room. I feel like they expect me to be cured of all my ailments after surgery, even my pcp had that attitude but with lifelong chronic illness it doesn’t work that way. In fact I knew things likely would get worse for me but this was my last chance at a tool to fight my out of control weight gain. You can only eat so little calories without help of some kind. My surgery wasn’t reliant on comorbidities since my BMI was 40. I have them. But most wont just go away with weight loss. But it doesn’t mean I regret the surgery. (My pcp had the attitude of why did I have it if it didn’t help those things ... well I was already at least 208lbs and BMI 40 (height 5’) like isn’t that enough of a reason?

Im sorry I just wrote a very long rant. My memory is so terrible I don’t remember when my last two appointments were and what was discussed at the last one. I don’t think they even mentioned my bloodwork. All I know is that was when he scheduled the tests. Now I’m following up on that. I almost don’t even want to go. I feel like I won’t be able to explain anything. And honestly surgeons just want to hear that you lost a huge amount of weight and that you’re doing great not “it’s complicated. “

Maybe write some questions down to ask him and take notes when he speaks. Also, is it possible to take a supportive family member or good friend with you to your appt. to help help advocate for you and help you to remember things that were said? Sorry you’re not feeling well and good luck!

1. You NEED to go to that follow up. You'll likely need another Dilatation (or two) before feeling relief. The stretch the stricture out with the understanding that it will likely close back down. So they do it a few times.

2. Chronic ailments are lousy and make people feel lousy. Sorry. But in order to heal and get relief you have to ask and answer questions. Communication will be key to finding the right medical approach. I agree that you should write down questions and read them instead of being frustrated in the moment.

Good Luck ?

Every time I write things down and ask a doctor to read it first, they never do. I always have my mom with me but doctors are always so busy and distracted it doesn’t seem to help much. I know I need to go, I also know how fatigued I am. I had to do laundry today three loads and change bedding on two beds and that task most people take for granted isn’t hard for them to do, exhausts me for days (which is oversimplifying it)

it took awhile to get this appointment and the medical transport is a random taxi or lyft ride and not very reliable. Sometimes they don’t show up or take a long time to do so.

I’m not even sure what to say or expect. It’s difficult separating out what is relevant to the surgeon and what is for my other doctors. I probably need more balloon dilation for the stricture but I’m not sure I can handle that. Especially since I have two other procedures scheduled.

I guess I’ll hold my breath and see what they say tomorrow.

Well one good thing, I broke a stall finally and am a little over a lb away from reaching my first of three goals which means I won’t be obese anymore.

I don’t think you are a slow loser at all. And stalls are perfectly normal. Please don’t fatigue yourself by trying to keep your calories too low. Be kind to yourself and stick to the plan.

I think everyone above has covered what I would say about dilation needing to be done more that once and writing things down.

So I really just want to make sure you know how much of a slow loser you aren’t again. And embrace the stalls, it is the bodies way of catching up and taking a moments rest. They won’t last long and you will lose again.

20 hours ago, Darktowerdream said:

Every time I write things down and ask a doctor to read it first, they never do. I always have my mom with me but doctors are always so busy and distracted it doesn’t seem to help much. I know I need to go, I also know how fatigued I am. I had to do laundry today three loads and change bedding on two beds and that task most people take for granted isn’t hard for them to do, exhausts me for days (which is oversimplifying it)

it took awhile to get this appointment and the medical transport is a random taxi or lyft ride and not very reliable. Sometimes they don’t show up or take a long time to do so.

I’m not even sure what to say or expect. It’s difficult separating out what is relevant to the surgeon and what is for my other doctors. I probably need more balloon dilation for the stricture but I’m not sure I can handle that. Especially since I have two other procedures scheduled.

I guess I’ll hold my breath and see what they say tomorrow.

Well one good thing, I broke a stall finally and am a little over a lb away from reaching my first of three goals which means I won’t be obese anymore.

Write down the question, then ask each one by mouth (read it to them). Have your mom take notes. Keep the notes. Also, all my docs give me visit summaries printed with my follow-up actions and instructions. So maybe ask for that from your docs. Now days most practices are on Epic or MyChart so you can go in and access your information and get printed summary reports.

I ALWAYS take someone with me to my appointments cuz of chemo brain. Also you can ask if you can record them so it will help you remember. You can explain your spectrum challenge and communications. Most docs just want to know how to help us as quickly as possible.

17 hours ago, ANewStart4Me said:

I don’t think you are a slow loser at all. And stalls are perfectly normal. Please don’t fatigue yourself by trying to keep your calories too low. Be kind to yourself and stick to the plan.

I guess maybe I worded it wrong, My weight has a natural habit of slow loss then a stall, then it moves down again. But as for calories, my metabolism is so extremely slow that when I upped them past a certain point my body wasn’t happy. It really has no impact on my fatigue, which I’ve lived with nearly all my life due to chronic illness. I’m sticking to the plan and it might seem abnormal but I’m just not normal.

6 hours ago, FluffyChix said:

Write down the question, then ask each one by mouth (read it to them). Have your mom take notes. Keep the notes. Also, all my docs give me visit summaries printed with my follow-up actions and instructions.

I deal with brain fog and have a hard time finding words or explaining things. I didn’t sleep last night, just a bit towards morning and woke with a migraine. Our ride was late and we hit a traffic jam.

I saw the nutritionist first, she is great. Their scale said I weigh less than my home scale. She used a fancy scale that showed body fat, muscle, water etc. she understands how I can’t exercise just encourages movement. Which I do my best. I showed her my weight tracking and explained my calories and what I eat. I explained I track my calories and food and how when I increased to 470 I stopped losing and when I went back to averaging 370 it started to go down again at a normal pace, She does want me to try to add soft proteins like flaked fish or veggie burgers since I can’t seem tolerate dense foods like chicken or tuna. She said I’m doing good for weight loss. I shared some of the things that have helped me and she said she was going to share it with her nutrition class. She said some people just take longer to progress. And I need to deal with my health problems and as long as I’m getting my protein it’s ok.

i didn’t see my surgeon, I saw a doctor that works with him. I had a hard time explaining the problems and forgot how to describe them. At some point when he started asking about exercise I blanked out because they should know my history. I tried to just stick to the main points, chest pain and still feeling the issues with the stricture and ask what the doctor recommends for the symptomatic hernia and Schatzki’s ring. As far as the surgery they feel things are going along ok.

Some things are just all the separate health issues I have. That I’m dealing with the best I can. I told him I’m having a colonoscopy and since y surgeon wants another endoscopy he said my gastroenterologist can do the endoscopy at the same time if I wanted that. He gave me my surgical report to give to my gastroenterologist.

I need to find out if my gastroenterologist can do the endoscopy since I’m already scheduled for the colonoscopy.

I know surgically things are going as well as can be expected. I also knew my chronic Illness would get worse due to the stress on my body. But I knew going in it was either have gastric bypass surgery or not be able to fight the weight gain and give up. I’m not expecting pity and I’m sorry for posting such long rants. TBH living with M.E. Is worse than cancer, worse than HIV, because of how it impacts every part of me. Not just my opinion of it but how it is medically.

After I get this colonoscopy and endoscopy done I’m going to try to add soft foods and soft vegetables. Like gardein vegetarian foods. I want to find out what’s going on first. I wish I could get some answers about the esophageal dysphasia besides it’s neurological. But honestly even if I knew the cause, nothing can fix nerve damage and I will have to learn to adapt.

I appreciate the responses. Just writing this is like exercise to my body.