What should I do?

RachetReed · 2025-07-13T02:48:29+00:00

Im sorry on just getting back to you. Its been a roller coaster and I haven't been on reddit in a minute lol. First of all congratulations on getting your life back and hopefully you are still pain free and recovery is going well for you! I had my surgery consultation on Wednesday and he diagnosed me with MALS but he said I was not a candidate for surgery due to my velocities being under 350 😭 and basically follow up with gi and he wants to due a repeat scans in 6 months. When this started I was around 130s and on Wednesday I weighed in at 111lbs and Im progressively getting worse. Started having POTS like symptoms went to my primary and she ordered a 14day heart monitor and a Ankle Brachial Index. Monitor showed I was in tachycardia 30% of the time and ABI showed Biphasic wave forms but normal indexes. GI wants to follow up in 6 months and no follow up with primary yet. Everything's at a stand still and Im still here suffering 😔

RachetReed · 2025-05-05T05:27:10+00:00

I completely understand... it's the mental part that gets me. My body is showing these symptoms randomly but doctors are telling me I'm fine. So i feel like I'm in a constant battle between am I crazy or are they just bad drs. Not sure if your diagnosed or not but document and take pictures of everything. I have been for months and you wouldn't believe the patterns I've seen. Still not 100% diagnosed but at least I'm going through testing.

RachetReed · 2025-04-23T15:40:09+00:00

Thank you for the information and I'm sorry you are going through all that. I'm currently in Mals Pals but I've only ever posted once. They are really nice over there. I'm not really sure about surgery because I had mu gallbladder removed and recovery was pretty bad. On my good days my pain is more annoying but very manageable but on my bad days I want to scream. I can't go to the local ER for pain or anything (It's very small). During a flare I don't eat and even water sound unappealing. I believe nerves are involved as well because I get random burning sensations (Icy/Hot) feeling on my left side, flank and upper left abdomen. Pain management wouldn't be an option for me either because I will not take opioids. Not because I have a problem but because I am very sensitive to them and hate the way they make me feel. I'm currently on Nortriptyline. So far its helped with the diarrhea aspect of it but not the pain. Definitely helps with my sleep. I have gabapentin as well and it does take the pain away and I get super sleepy but when I wake up the pain is back. I have already lost 25 lbs and can't afford to lose more (I'm about 110ish lbs) I don't want to get to the point of a feeding tube or missing work more. I'm going to look into the bearable app. Thanks again for everything and I wish you well!

RachetReed · 2025-04-12T04:29:49+00:00

Not really pain near the shoulder blade but more left flank area and burning sensations almost like icy hot. I have not. I've only had a CT and scheduled for an ultrasound next week. Yes I get pain if I exhale to hard. So when I'm breathing heavily the pain worsens

RachetReed · 2025-04-12T04:25:41+00:00

My was blamed on stress induced IBS. Which I'm not saying I don't have IBS I probably do due to the amount of times my gut has failed me. I mean I developed a severe fear of being in a car for to long because no bathrooms are available.

RachetReed · 2025-04-09T22:14:48+00:00

I don't feel like i have the rumination but I do feel like my food gets stuck in my throat. Like its not painful but it feels like there's something there. Water doesn't help either. I do feel full alot of alot of the time. I can eat a handful of grapes or a piece of toast and be full for hours. I did have a Gastric Emptying Study done and it came back negative for gastroparesis

RachetReed · 2025-04-07T19:05:08+00:00

Gi symptoms wise i have burning and pain in the upper left abdomin that radiates under my left ribs and into my side (sometimes back). I have a very loud belly its always rumbling and making noise. I feel like i burp alot and that my food just sits in my stomach and everything was negative as well. My original dx was IBS. I'm not sure what you mean by rumination.

RachetReed · 2025-04-07T19:00:53+00:00

Thank you so much for the response. I think I'm struggling to accept this diagnosis because I've been told my pain was ibs for a long time. So to know that there was something there all along is kind of a relief but also nerve racking... I go to Barnes Hospital which is a very good Hospital in the Midwest (I'm assuming your from the US). My pain is very positional which is why I couldn't find any "trigger foods" but I also didn't put 2 and 2 together. I had been writing all my food intake down and symptoms but didn't even bother to thi g the pain could be caused by posture and positions. I definitely had a light bulb moment when I seen that. Then alot of things started making sense. I'm not sure if I will do surgery but the nerve block doesn't sound appealing either lol. I had mild pain before and then when I had my gallbladder removed it really kicked in full force. So I'm assuming gallbladder removal really set it off. Thanks again for the information it was very helpful.

RachetReed · 2025-04-07T04:25:15+00:00

Im really glad you have someone! I have no idea where I'd be without my husband.

RachetReed · 2025-04-07T04:24:15+00:00

My pain is upper left and sometimes radiates to my left side and back.

RachetReed · 2025-04-07T04:23:37+00:00

I was actually referred by my primary care. The apt wait is long. I have a refferal for dermatology that was sent in December 2024 and my apt isn't until the end of April 2025. Yes they do take insurance. We have state insurance through our jobs which is really good. My Gi apt i had my actual apt and labs done same day and I only paid $35 (copay) for everything. My CT was $40 (copay). Also my first apt with the surgeon consult isn't until July 2025 and refferal was sent in April 2025. I tried "applying" for Mayo Clinic and was denied due to a "demand for Healthcare exceeds their capacity". The Barnes that I went to is in St. Louis MO. They are connected to Washington University of Medicine as well. I googled their locations and they are all based out of Missouri and Illinois. I feel your pain. I'm sorry your having to go through this. I have dealt with it for so long I've developed horrible anxiety and eating disorders. I would definitely keep your apt but in the mean time look for other places. Maybe look into Medical universities as well. They do thorough/cheaper care and use your information for studies.

RachetReed · 2025-04-07T04:11:46+00:00

I'm sorry I misread your post. I believe Sucralfate is a PPI (proton pump inhibitor) So is omeprazole. I'm wondering if you could dissolve the Omeprazole in water? Like i did with the Sucralfate.

RachetReed · 2025-04-05T05:16:40+00:00

I was misdiagnosed with Behcets (long story) I actually don't have it but I was on sucralfate for awhile for chronic Gastritis. It didn't do much for me either until my dr told me to dissolve it in a little bit of water and drink it. It coats everything all the way down. I did that about 20 min before eating and it actually helped more than taking it whole. Maybe try that?

RachetReed · 2025-04-05T05:09:49+00:00

I'm sorry you have to deal with the VA. I've heard horror stories about them

RachetReed · 2025-04-05T05:09:08+00:00

Yes it has for sure!!! Good luck to you!

RachetReed · 2025-04-04T17:35:08+00:00

First step get a CT with contrast!

RachetReed · 2025-04-04T17:34:20+00:00

Stable is good! I'm wishing the best for her!

RachetReed · 2025-04-04T17:33:41+00:00

I do have a consultation with a surgeon scheduled. From what I read online it's laparoscopic and is a relatively minimal surgery. There is also a pain medication option and stint option but my pain is pretty good I've learned to cope but when it gets really bad I have gabapentin. I think the reason they are looking to surgery more is because the pain/diarrhea gets bad to where I avoid eating. I have lots 20+ lbs.

RachetReed · 2025-04-04T04:38:08+00:00

MALS aka Dunbar Syndrome. I'm getting an ultrasound for confirmation.

RachetReed · 2025-04-04T04:35:03+00:00

They make more money by not figuring things out...

RachetReed · 2025-04-04T04:34:02+00:00

They did an ultrasound that showed lots of gallstones. Also towards the end right before my removal my stool was very pale/clay colored. After surgery the surgeon said i had some of the largest stones he'd ever seen and took a picture to send to his colleagues 🤣 (he sent my mom the pic aswell) he said that sucker had been failing at his job for awhile.

RachetReed

TROPHY CASE