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Concerned husband desperate for answers
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.
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I have no answers but y’all are definitely in my thoughts and prayers.
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4 ReactionsI am not a medical person but have gone through some GI issues in the family and have some heart issues myself related to GI/possible hernia.
I looked up a lot of terms in that report, and looked up meds.
One thing: pain meds can cause constipation and other GI issues. She takes polyethylene glycol apparently to combat this-?
Colitis or ileus is not related to a hernia, right? Is she on meds for the possible colitis? Are they doing an endoscopy and biopsy or culturing for bacteria? I don't really know what they do for that. My cousin goes on prednisone for his ulcerative colitis, which is autoimmune.
If it were me, I would look at that med list, side effects and interactions. How long has she been on a PPI? Seroquel? Dicyclomine? I am not saying that meds are the reason for problems but they can sometimes make things worse.
Are the lung issues chronic or from anesthesia? I read that atelectasis ca be from anesthesia but don't know if/when the alveoli recover.
Has she seen a nutritionist or tried an elimination diet at any point? For instance, no gluten or dairy for a few weeks.
Can the Luvinox blood thinner given in hospital plus other meds, cause the bruising?
Harm done from the medical system can lead to chain reactions that cause more harm. I am not saying that is going on here, but seeing a functional medicine person might be helpful if she is out of crisis.
Does she have a good PCP? A GI and pulmonary doc she trusts at this point? It seems key to have the right providers. Sorry I am a lay person as are all of us here and I can only ask questions, and those are based on experience not medical knowledge!
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5 ReactionsMy 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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6 ReactionsDear concerned husband,
First: my sympathy! What a ...I don't have a word for it!
I am not a medical person, so I can't address any of those issues, but I do have some ideas about how you can get some help.
About the bruising, maybe call 1. the last doctor who treated your wife, AND 2. the last facility that she was at. Maybe the bruising really is a normal effect of her last treatment, but maybe not. You deserve an answer that relieves your fears! Sometimes you have to be ... insistent, but maybe you know that already.
Check your health insurance for a nurse hotline. My insurance has that benefit, and the nurses have been really, really helpful. This is something that you might be able to do today. If she has an insurance card, there should be a customer service number on the back. You might be able to get information about her insurance plan online from the company. The nurses might be able to give you information about the bruising and hopefully calm your fears about it- or tell you what should be done about it.
Not today but soon? :
Does your wife have a primary care physician / general practioner? If not, this may be a good place to start. It can be helpful to have one doctor looking over all of the reports. My guy usually sends me to a specialist, but it's good to have him in my corner. If you need to find one, it might be a good idea to ask around. My neighbor recommended my current primary. I also ask the nurses at doctors' offices for recommendations. I make a point of asking the nurses in private, so they feel comfortable to be honest about it. Same with the medical technicians. They work with the doctors and have some extra insights, but they have to be cautious about what they say about the doctors.
If you have the financial resources, you may want to get a "concierge" doctor. This kind of doctor charges a flat rate. I heard about 2,500 to 5, 000 dollars a year. It might complicate insurance payments for procedures. From what I've heard, the concierge doctors really pay attention.
Longer term:
* It sounds like your confidence and trust in our medical system and in our doctors has been completely undermined-- a very reasonable reaction under the circumstances.
If there is one doctor in whom you have any confidence, then maybe contact him/her by phone or message or make an appointment. You could explain it all to him/her and ask for a recommendation of a primary care doctor or for what to do next.
There are some doctors left who are compassionate and helpful.
* The horrible situation with your wife may have created anxiety in you. (Well, I'm pretty sure that it has created a LOT of anxiety, but I don't want to make assumptions about it.) I have gotten a lot of help dealing with anxiety and chronic illness from my mental health therapist. You may want to consider talking with a pro about your situation. It might help you, too, and your wife indirectly also. It could be covered by your insurance.
It might take awhile to get an appointment, so, even if you aren't certain that it would help, you may want to make an appointment soon.
It took me months to see that my therapist actually was helping me a LOT.
* If you are older, your state or county or town might have services to help you. They may know of services that you don't even think may exist. There may be things that could take some of the stress off of you.
* If you or your wife are employed still, the human resources department people at your work might have some good ideas. They have seen a lot of problems and know the ins and outs of insurance and government protections, etc. The HR ladies at my work were very helpful to me. You may qualify for Family Medical Leave.
* Please remember to try to take care of your own physical and mental health, for both your sakes. It is not being selfish; it is necessary.
I'm sorry this is so long. I hope that there is something in here that can help you folks out. I'm sure that you have already thought of or tried some of these suggestions, too.
Let me end by saying I think it is wonderful that you have been so supportive of your wife. It must be very, very hard at times. I hope the very best for you both!
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9 ReactionsIt matters where you go. Can you get to the gi clinic at Mayo?
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4 ReactionsHas your wife also been screened and tested for MALS median ligament arcuate syndrome. This is what I deal with . The MALs causes many secondary issues such as cardiac etc.. sorry I have no answers for you other than finding other health care providers and get other medical opinions and a different surgeon. Best of luck and prayers.
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3 ReactionsMay the Lord bless you and keep you!!!
The Lord our God is the Physician of our souls and bodies.
Pray first then make your decisions.
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3 ReactionsNo 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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1 ReactionI can make it happen, going to call in the morning to see if I can get an appointment for her. It will be a bit of a drive, and I know it will effect my wife if we go all the way there just to come to a dead end like every other time...so I pray that this experience will be different..
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3 ReactionsThat'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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