Just diagnosed with type 3-4 giant hiatal hernia with twisted and inverted stomach. I’m very scared.

Hi, all. This is my first post. I have lupus, celiac, and had Graves‘ disease that was treated with radioactive iodine several years ago, which may have caused a parathyroid adenoma that I had removed last year. In 2004, I had a very unexpected pregnancy that was high risk - I developed preeclampsia, was on bed rest and steroids most of the pregnancy and gained a significant amount of weight that caused a hiatal hernia. I became very anemic and have been getting blood transfusions or iron infusions river since then. Several endoscopirs showed I had a moderate hiatal hernia that was rubbing against my rib cage and causing bleeding. No doctor ever recommended hernia surgery for me over the years and when I asked about it, I was advised against it.

Fast forward to late 2017, I developed severe stomach pains, reflux that isn’t helped by PPIs plus Pepcid, extreme fatigue, shortness of breath, headaches, dizziness, blurred vision. I also have a weird tickling in my throat. I’ve been through brain scans, vision tests, lung CTs, numerous X-rays and another endoscopy just a few months ago after which I was told I have a mid to large hiatal hernia and peptic ulcers without h pylori. A few days ago, I finally had an abdominal CT and was told about the giant peh with the twisted inverted stomach plus gallstones. I was referred to a surgeon who told me I had to have surgery but that she is going on maternity leave until November and she thought I could either wait for her or go to one of her colleagues sooner. She said I’m not vomiting yet and that I should try to eat baby food and Endure - and lose at least 10 pounds. My BMI is currently 34 and I have struggled with weight since my pregnancy.

I don’t know how I can wait. I am in severe pain and cannot eat. I am losing weight, but I need to lose weight anyway - though I’m not sure this is the best way. I have extreme anxiety and have developed panic attacks since all of my new health issues started. I am a single mom with full custody of my daughter. My husband walked out on us a few years ago, saying he didn’t want a sick wife anymore. He was having an affair and currently lives with his affair partner. He doesn’t see our daughter much, but when he does, he and his girlfriend treat her like dirt. I am terrified of what will happen to her if I die from this - either before I get to surgery or from the surgery. I am just really, really scared. I do not have a supportive family and don’t even know who couid drive me home from surgery and help me out afterwards. I am just truly desperate and scared and could use some advice. I’m sorry for the novel!

Susie,

Thank you so much for your kind and thoughtful response. I really needed to hear a voice of reason, as my worries about this are messing with my mind. I have been crying ever since I found out. I feel I’ve been through so much already and that there is just never any light at the end of the tunnel. I’m overwhelmed by this new news.

I was diagnosed with GPEH at the University Of Michigan hospital after being referred there by two smaller hospital systems. (I’d been to ER several times and even had a heart cath because I was describing chest pains and shortness of breath.) Dr. Dana Telem is the surgeon I consulted with. I have been told that U of M is better than Henry Ford or Beaumont for this kind of surgery, but I don’t know if that is accurate. Maybe Cleveland Clinic or Mayo Clinic are better for this, but given my personal situation, I feel it would be harder for me to get anyone to take me to either of those places for surgery or even a consult.

I have asked my mom to help me get to Ann Arbor for the esophagram this week, as I am no longer able to safely drive myself that far, and she said “no”, and that I am asking too much of her. She told me she is not an appropriate person for me to ask and that it is not her fault I don’t have any friends. She then told me to take a bus and sent me a link for a shuttle service to Ann Arbor and then blocked me from her phone! I called the service, and it was over $200 round trip. My mom is the only person I know who does not work, so that is why I asked her.

I have acquaintances, but not close friends that I could ask to take off work, as socializing has been the last thing on my mind for several years as my illnesses became more debilitating. It’s mostly just me and and my daughter, and I admit my quality of life is very poor. My daughter is 13, so I won’t have to lift her, but I am the only one to cook and clean for her, and transport her. It is very hard to do all of this on my own while sick, and getting harder everyday. Her friends mothers have offered to take her from time to time when I’ve really been in a bind, so that might be a short term option. Her father is not an option. I have asked him to help and he declined to do so.

I don’t have any siblings in the picture - my brother has been living across the country for several years, and my sister is closely aligned with my mother and says my problems are not their problems and that it is inappropriate for me to ask either one of them to help with this. Prior to this situation, I didn’t think I was estranged from either of them and talked to my mother daily and texted with my sister often, but I never asked them for help getting to appointments. My daughter is the only grandchild/niece, but neither one of them has ever shown much interest in her. My dad and stepmother might be willing to help, though I don’t feel it’s right to ask them since my dad is going through prostate cancer and my stepmother is recovering from knee surgery.

I didn’t intend for this to be a pity post, but typing it all at, I know it must seem that way.

Thanks again for your input!

Shanny, I agree with SharonZ, ask your dad & stepmother to help you out. Your daughter may well be a much needed diversion for them. Not only that, at her age she could be a help to them. No comment from me about your mother & sister. Family can often just be the worst, you are not alone in that department.

Traveling is out of question considering your circumstances. Get online & research your local hospitals. Do you know what hospitals the group uses for their surgeries?

Considering the age of your daughter, she is old enough to help you after surgery. There are many options for food for her that she can microwave, sandwiches for lunch, all easy kid friendly meals. I have a 13 yr old grandson that I keep during the summer & after school. We have taught him how to cook some things, he is a whiz with a microwave for what he likes. He has learned how to sort clothes & even wash his own clothes. His parents are divorced & I am so, so glad his mom has worked with him like this. My son was pretty self sufficient by the time he was 13 too. My daughter on the other hand, I taught her nothing!! She was the first born so I thought I had to do it all. That was a huge mistake because she knew nothing & I mean nothing. It's sad when 20 yr old asks how to boil water, scramble an eye, make a boiled egg!!! I am serious too, I did her no favors doing that.

Your post is not a pity post! You are totally overwhelmed by all of this. Sometimes, just getting it out there & having someone unknown bounce ideas off of a person can help. Do check with some churches as well. You are a fighter & a very strong woman!!

Keep us posted.

Well, much has happened since I last posted. But first, I want to thank you all for your kind and supportive words and suggestions for how I can get through this. (I apologize in advance for how long this is.)

Last Saturday, 6 days ago, I was rushed to U of M hospital by ambulance - which is almost an hour away but I knew I would be transferred there anyway if I was taken to my small local hospital. I hadn’t been able to eat anything in four days because everytime I tried, the pain in my lower left quadrant across the umbilical area was so severe and I ended up having bright yellow diarrhea if I tried just one bite of a very mild food. I could barely drink water. I felt very faint and dizzy and knew I had to call an ambulance. I was loaded in right in front of my daughter who stood there crying. I called my dad and asked if he would come pick her up. He said he would but since he is 3 hours away it would take a while. My daughter ended up calling her best friend crying, and her friend’s patents came to get her. I was very relieved my daughter wasn’t alone.

I was given glucose in the ambulance because my blood sugar was under 50, my BP was very high too. At the hospital, they determined my potassium was also low, as was my hemoglobin and my ferritin was zero. I wasn’t in transfusion territory yet, but they couldn’t give me IV iron either because I am allergic to venofer and can only have ferraheme, which they oddly do not have. I was on IV fluids for four days - partly because I was dehydrated and partly because they wanted to give my digestive system a break. When they tried my on a soft diet, I couldn’t keep anything in. They gave me carafate 4x daily, Zantac 4x daily, and Prilosec 2x daily, plus lidocaine but nothing helped the pain. I was already scheduled for an outpatient esophagram, endoscopy, and colonoscopy. I begged them to do those tests while I was there so I could find out why I was in so much pain. The GI team didn’t think the endoscopy and colonoscopy were emergent because they said my abdominal CT ruled out things like tumors, perforations, and gallbladder or pancreas issues.

They did do the esophagram and I thought that test was a nightmare. The “crystals” I had to swallow made my stomach feel like it was on fire. Then I had to drink a total of 3 cups of barium and three cups of water which is a lot for someone with a hernia. I was so nauseous and dizzy being turned upside down and shaken around. The test did confirm a “large” paraesophageal hernia but they didn’t tell me how much of my stomach is herniated and I don’t think I want to know. They also diagnosed esophageal dysmotility and reflux damage but no Barrett’s.

The day before I was released, the GI team came in and told me they think the nerves of my GI system are overstimulated and spasming and that that is what is causing my umbilical pain and diarrhea. I knew they were telling me I have IBS. Given the amount of non-stop stress I have been under for the past few years, it didn’t surprise me to hear the diagnosis, even if I’m not sure I agree with it. They tried me on levsin to calm the guy they said and put me on a soft fodmap diet. The levsin did not help and it’s too soon to know on the diet.

I called the surgeon’s office from my bed and asked if they could get me in before the doctor left on maternity leave. I was told she had an opening at the end of the month right before she left on leave. I booked it, then an hour later I got a call back saying the doctor didn’t think she should do a surgery like mine right before she was going to deliver. I asked what that meant, trying to gauge if it was because the doctor thought my surgery would be difficult, and I was told the doctor felt the length of my surgery was more than she thought she should do that late in her pregnancy. I respect her decision and I don’t want a surgeon who isn’t feeling their best. I was referred to her colleague Dr. Johnathan Finks, who unfortunately gets poor reviews online. I am going to consult with him next week and make a decision from there. On this forum, I have read about Drs. Zane Hammond and Jules Lin, sonof anyime from Michigan has any surgeon suggestions, I would appreciate it.

In a way, it’s good this happened, because I found out just how little family support I will get after surgery. My aunt who was having a holiday party the day I went in texted me asking where I was, I said I was in ER, and I never heard a word back from her. My dad (who is an alcoholic) and his wife never showed up to pick up my daughter from her friend’s house and she ended up staying at her friend’s the entire time I was in the hospital. I did not hear from my mother or stepmother at all, but my dad did call me three days in a row yelling at me. The first time, he called to tell me I was going to lose custody of my daughter because I’m too sick to take care of her, and it turns out he contacted my ex-husband about this. (My ex had his custody rights taken away). The second time, he told me he is “in charge now” because I “have no one else” and the first thing he is going to do is get me in with a psychiatrist because there is nothing wrong with me - it’s all in my head. He said he spoke with my mother and my mother agrees with him. (I should add that my mother had shingles in her eye and viral meningitis and has some neurological damage.) The third time I heard from him, was the day I was released. Prior to his phone calls to me, the plan was for him to pick me up. That morning, he called and said he spoke with the social worker and arranged for me to take a cab home and that he would pay for it (over $200), but added “how dare you pull a stunt like this for attention, and don’t you ever get in an ambulance again without knowing how you’ll get home.” My BP shot up to 179/88 and the nurse made sure no more phone calls from him would be put through. I’m relieved he didn’t pickup my daughter while he was drinking.

My daughter’s friend’s mother offered to pick me up, but I couldn’t have her do that after she had taken care of my daughter all that time, so I decided I would just pay for a cab. Just as I was about to do that, I heard from my sister asking where I was and if I was okay. She said my dad had been calling my mother yelling at her and asking why she couldn’t step up and be a parent, and my mother was asking him the same thing. So, I now know that I have to completely write those two off. I realize this all sounds very Jerry Springer, but they actually both have masters degrees and held professional positions, which makes their level of dysfunction even more bizarre. My sister offered to pick me up, and I took her up on it even though it was a ways for her to go, because I needed someone to talk to about this. She said our family just isn’t equipped to handle a crisis like this. (No kidding.)

I called the hospital social worker the next day and explained I most likely won’t have anyone to bring me to surgery or take me home or help me out afterwards. She looked into short-term care options for me and found out I do have coverage for up to 100 days per year, so I may end up doing that. The next step is finding out where my daughter could stay the first week, and I may be able to ask her friend’s mother for that. I will say, all this drama is increasing my symptoms and my fear about the procedure.

Thank you for your thoughtful reply, Susie. Regarding my family issues, I had to toughen up and not let that drag me down right now. My sister is being a little helpful, offering to possibly take me to my pre-surgery endoscopy/colonoscopy if I can get the time moved. I will be under full anesthesia and would like someone there to make decisions for me if necessary.

As far as the surgery goes, I met with the alternate surgeon yesterday, Dr. Jonathan Finks. He was actually very nice, and informative, but bedside manner is not what I’m concerned about. He does bariatric surgery, and said he does a lot of hernia repairs, too, and he would do my surgery laparoscopically. He tries to avoid the use of mesh, and he would lengthen my esophagus and do a partial wrap. He said most of my stomach is herniated into my chest, and the stomach has flopped over. He said my esophageal junction still remains below the diaphragm and he and his resident thought that was a good thing. He can’t do the surgery for about 6 weeks. I am 23 pounds away from a BMI under 30, which is what the surgeon would like, and waiting 6 weeks would give me a chance to achieve that, but there is so much pain and pressure I can’t drive anymore, and it is becoming difficult to get even broth down without pain, so I’m weak from not eating and struggle to walk - plus the shortness of breath and dizziness are getting worse.

The other issues, are that my GI doctor said I need a thoracic surgeon for this surgery, not a bariatric surgeon. I have asked him twice for a referral to a thoracic surgeon, but have not gotten a response. The GI doctor also said I need to have my gallbladder removed at the same time, because gallstones were discovered on my ultrasound, and I’m young and could have serious gallbladder problems later if I don’t get it out now. However, the surgeon I met with yesterday said he is not inclined to remove my gallbladder because it will extend an already long 4-5 hour surgery, and because only 30% of people with gallstones develop problems. He said the gallbladder does serve a purpose and removing it could create more issues. I really don’t know what to do about the gallbladder issue.

I did tell the surgeon that my GI doctor said I need to go to a thoracic surgeon for this, so he referred me to Dr. Phillip Carrott (all of these doctors are at U of Mich). I asked for a referral to Dr. Jules Lin, because I read about him on this forum, and he has several published articles about GPEH, but was told that Dr. Carrott works with Dr. Lin and is equally good. I know he is younger than Dr. Lin, and I am not sure if that is a good thing or not. The problem with consulting with Dr. Carrott, is that I can’t get an appointment with him for two more weeks, and Dr. Finks office can’t schedule surgery for me while I’m still consulting other surgeons, sonot pushes my surgery out even further. I am debating if I should just go with Dr. Finks, and forego the consult with the thoracic surgeon.

So, my questions for those of you who had GPEH repair, is should I definitely have a thoracic surgeon for this, or should I go with a surgeon who does a lot of bariatric surgeries but also has experience with GPEH. I think a bariatric surgeon certainly has a lot of experience dealing with the stomach. Also, is anyone here familiar with any of the surgeons I have mentioned?

Thank you in advance for any input you can provide!
(I may post the specific surgeon questions in a separate thread.)