Concerned husband desperate for answers

Posted by concernedhusband @concernedhusband, Dec 2, 2023

My wife started off with constant vomiting, inability to hold any food down, stomach pain, weight loss, hiatal hernia(recurring), and tachycardia which always led to being told she would be admitted to provide all the vitamins and fluids she had been unable to hold down orally. Once her blood levels were back to somewhat normal, she would be discharged with pain killers and other medications. A day or 2 after discharge, the symptoms would start again and the cycle would keep repeating itself..this went on for nearly 2 years before a procedure was suggested...2 years of me having to watch my wife, who has always been a strong woman, be destroyed by not only the physical aspects of everything, but the mental and emotional weight it came along with. I can't even count how many times we would arrive at the emergency room, only to have the staff shame her, and making her out to be a junky anytime she wanted something to help make the pain more tolerable. 2 years and 5 hospitals later, we finally found one that cared enough to look into her symptoms, which is how we found out she had a large hiatal hernia, which they believed was causing her symptoms. She was given a referral to a surgeon who showed no concern for her health, and who ultimately decided to ignore multiple test images/results clearly showing/stating the size of the hernia, since he said he did not see it himself on the xray he took the morning of her scheduled hernia repair op. He decided he would perform a nissen fundoplication and throw out the hiatal hernia repair. When the anesthesia finally wore off, I received a call from my wife crying in a way I've never heard before. She was in worse pain than before and being ignored by the nurses since she was alone and I was barely going to be on my way from work. She ended up being discharged, despite being told she had an infection, the following morning with no instructions and no follow up from the surgeon. I ended up having to take her to the ER that night, where we had been informed that notbonly was her surgery not one that should've been done, but also that the surgeon had wrapped a part of her hernia in the mesh, which was going to cause extreme pain, and corrective surgery would be needed, but no sooner than 5 months(any sooner would cause her stomach to shred) and all that could be done in the meantime is to provide pain management. So for 5 months, she was in horrific pain, and still having the same symptoms as she had prior to the surgery, only now, unable to vomit. Corrective surgery eventually happened which took 9 hours and 3 surgeons vs the estimated 3 hour estimate I had been given, due to how much scar tissue and sloppy work had been done by first surgeon. She was okay for a month but eventually symptoms returned and we spend more time at the hospital than we do at home, with no one being able to give me any answers on what is going on. Her hernia has returned and she was just discharged from the hospital today after a week, only this time, she had extreme bruising appear out of no where on her sides, and it was brushed off as no big deal. As every day passes, and I continue to see her health deteriorate, I worry more and more, as all my attempts to find answers, end up the same as all the others..which is how I ended up finding this chat board. And I'm desperate for any answers or help I can get for her. Thank you for reading my story, sorry it's lengthy. Or doesn't make sense in some areas. I haven't slept much, the bruising has me worried so I keep checking on my wife periodically throughout the night as she sleeps. I've attached some results from this recent hospital stay, any insight at all would be greatly appreciated.

Interested in more discussions like this? Go to the Digestive Health Support Group.

@esikora

My daughter has been on a similar "journey" for the past year, only in her case the cause is cndometriosis spread to the bowel and intestines. She is scheduled for surgery in Feb., but in the meantime, she regularly winds up in the ER for pain. And because she is a young woman with a psych history (like your wife, as I read on the report), she is suspected of drug- seeking and basically ignored...But bless you for being a supportive husband. (My SIL, not so much.) Hang in there, and keep fighting for her!

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@esikora the same thing happened to my daughter, though she has both celiac and had endometriosis. I am PM'ing you so as to avoid derailing the thread!

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Polyethylene glycol could explain the lack of a solid bowel movement. I wonder if she could have a medically supervised "med wash" and start from scratch. (I was recently in the hospital and had to fend off medications I knew would harm me.)

I strongly suggest, maybe through a PCP, or on your own, finding a functional or integrative provider. It is well worth trying to eliminate foods from her diet and then reintroducing them. We had a lot of improvement specifically by avoiding gluten and dairy. Even in a situation serious enough to involve hospital.

Has she had a biopsy for yeast? That can also be a culprit. The docs I mentioned can do blood or saliva tests for that.

You asked about this and it is your business, but I would think about going to work. Maybe you can do hybrid. It is also really helpful to have a therapist to help you deal with this. I cannot tell you how helpful that was when my daughter was sick. Find one who deals with chronic illness and pain.

To me, avoiding harm seems as relevant here as finding answers and relief. I could be wrong. In any case, so sorry you both are dealing with this.

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@concernedhusband

No she hasn't, I've tried bringing up different things, to see if it could be a possibility..but they don't seem to like that and seem to always shut it down. It's frustrating because they seem to be following a cookie cutter diagnosis method and seem to be satisfied with leaving it at that...I don't understand how they could brush something like this off as normal...this is someone life...my wife only has me..I've had to miss so much work, trying to take things a day at a time and being so torn about what I should do because every decision seems to be right in one aspect but wrong in another...do I go to work and let her somehow deal with this on her own? Or do I go through it with her and try and figure out how to survive? I'm sorry about putting this all out there..I've kept this all inside in an effort to remain strong for her..

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It's very frustrating and heartbreaking what you two are going through. If the care providers are not listening to you and your wife and are not willing to look at all possibilities then it might be time to seek other medical care providers. Easier said then done depending on what state you live in and the type of insurance you have. I pray you have some solutions and comfort soon.

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You need to get her to a Real Hospital. You should try Cleveland Clinic Main Campus , Mayo Clinic Jacksonville Or Rochester, MN, Duke University Hosp , Many NYC hospitals, Johns Hopkins in MD .
Or Google best hospitals for Gastrointestinal issues .
Cleveland Clinic in Cleveland is #1 Heart hospital in the world.
My Mom went there and had surgeries done when we lived in Ohio .
I’m on my 6 th Gastro Dr in 10 years. Have many diagnoses, chronic symptoms. I really feel for your wife , and YOU! Where do you live and what’s her age ?

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@rozy288

You need to get her to a Real Hospital. You should try Cleveland Clinic Main Campus , Mayo Clinic Jacksonville Or Rochester, MN, Duke University Hosp , Many NYC hospitals, Johns Hopkins in MD .
Or Google best hospitals for Gastrointestinal issues .
Cleveland Clinic in Cleveland is #1 Heart hospital in the world.
My Mom went there and had surgeries done when we lived in Ohio .
I’m on my 6 th Gastro Dr in 10 years. Have many diagnoses, chronic symptoms. I really feel for your wife , and YOU! Where do you live and what’s her age ?

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We live in Anaheim, and she's 34, going on 35 on January 7th.

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UCLA hospital maybe ??? A good teaching hospital.
Keep searching !! ❤️‍🩹

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@concernedhusband

That's the thing I don't understand, ever since the first botched nissen fundoplication, she hasn't had a solid bowel movement and has been tired as well as experiencing constant dry heaving, only to spit up mucus. They give her tons of medication for constipation, even though she's not. They have put the hose down her nose into her stomach 3 times already within this past month without any results. Her vein in one arm has already ruptured from the i.v and this last stay ended up leaving her other arm with a lump at the iv insert point and has been hurting her these last 3 days, and is warm to the touch.

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Hello @concernedhusband and welcome to the Digestive Health support group on Mayo Connect. You have had many responses from Connect members to your wife's health problems. It is understandable that you would both be frustrated.

I think that getting a second opinion is a good idea. If you are near a multi-disciplinary health care system, like Mayo Clinic, or a university medical school, those would be your best places to go for a second opinion. Often, hard-to-diagnose disorders are best treated at these types of medical institutions.

If you are interested in a second opinion at any of the three Mayo Clinic campuses, here is information on how to request an appointment, http://mayocl.in/1mtmR63.

Are you near a Mayo Clinic or a university medical center?

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Keep us posted on where you’re taking her next . Praying 🙏.
I suffer badly daily so I feel for her .
My 10 year journey w/ this is never ending.

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Has anyone mentioned abdominal adhesions? Just recently diagnosed and found it has many many symptoms. I was diagnosed thru a laparoscopy and realized all the GI issues over the last few years attributed to this. They honestly found out because they couldn’t determine what my symptoms were pointing to. It’s a horrific diagnosis but just a thought for you. Best wishes to you both! 🙏🏻

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@concernedhusband

We live in Anaheim, and she's 34, going on 35 on January 7th.

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UCI is right in your back yard. Have you tried them?

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