Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Digestive Health Support Group.
Connect
Hi what do they do for those lesions ?
Did they put you on a medication to help heal stomach lining ?
I’ve tried a few of them but none helped me ( I don’t take any PPI’s) !! They do more damage than good .
-
Like -
Helpful -
Hug
1 ReactionHello @clstidham and welcome to the Digestive Health support group on Mayo Connect. I appreciate your suggestion about abdominal adhesions. It sounds like you have some personal experience with this.
As you are new to Connect, please share, as you are comfortable doing so, some of your history with digestive problems. I'm assuming that you have had abdominal surgery since you have had adhesions. Is that correct? Share if you will, how the adhesions were treated.
-
Like -
Helpful -
Hug
3 ReactionsThere’s nothing they’ll do for the adhesions until life threatening so I stay on a liquid diet. 90% of my intestines have formed into 1 large mass and I get blocked easily now. Had only had gall bladder and appendix surgery both done laparoscopic and the body sends in scar tissue to heal. My body has overdone it and the only help would be to try and cut all the adhesions but multiple docs feel that it is far too dangerous and the adhesions would comeback worse. The pictures of my insides actually look like someone put stitches in attaching everything together.
-
Like -
Helpful -
Hug
1 ReactionOh my gosh ! That’s terrible for you .
Can you do any soft foods at all or just liquid?
A friend of mine had gastric sleeve surgery years ago . Lost 100 lbs but then got very sick . Had to remove his stomach and attach esophagus to his intestines somehow . He is doing much better now and no colostomy bag at all .
These digestive issues are so complicated. People just don’t understand. Praying 🙏 for you .
My mother had adhesions from diverticulitis. She was fine as long as she took a stool softener. The assisted living forgot it for two nights and she was totally blocked. Ended up with a colostomy which wasn't as bad as expected. Disposable bags made it easy. Younger folks probably would have had things reconnected!
HI to Concerned Husband- you can skip this post. Hugs to you and your wife.
Hi other folks!
Some of the recent posts seem kind of unrelated to Concerned Husband's needs right now. Let's try to keep this conversation exclusively to him and his wife. Direct answers and suggestions for him only.
If you want to contact somebody here about another topic, you can send that person a "private message" by clicking on their name that is in the blue color. That takes you to another screen where you can see at the top left a place to get to the private message.
I hope I don't sound too bossy. You all seem like nice, helpful people. I'm just trying to make it easier and faster for Concerned Husband to find what he needs. Good luck to us all. 🙂
-
Like -
Helpful -
Hug
1 Reaction@concernedhusband
Is there a specialty clinic you could have her see (Mayo). In reading her scan, it appears she has a lot going on internally so it makes sense she is uncomfortable. Mayo takes on the most difficult cases, and will essentially start from the beginning and run their own tests and develop a plan. They don’t go into anything without a surgical plan. I’m so sorry your wife is dealing with this. You didn’t say her age, but I’m guessing she is definitely not at the health she should be given her age. Have they tried TPN at home to get her body healthy?
-
Like -
Helpful -
Hug
1 ReactionI am so sorry for what you and your wife are going through. I can relate when I read your post. My husband had a similar situation but not GI, it was cardiac. For one year and a half he visited specialists, visited ER 10 times or more with symptoms of dizziness, shortness of breath, weakness, chills and high blood pressure. The cardiologists tried blood pressure medications some of these didn’t work. They were clueless on why my husband was having the same symptoms all over again for so many months. I am a retired RN and I kept telling the cardiologists and other specialists that there was something else causing his symptoms. Everything was coming Negative (Normal) in labs; only a Right heart cath was done and he was diagnosed with Right Heart failure but even with meds for it my husband continued with his symptoms. They were all questioning what was going on. We were tired, depressed and disappointed. So we decided to call Mayo Clinic to the Cardiology department. For our surprise, a cardiologist saw him and check him and he said, “I think that you suffer from Amyloidosis”. Me as a RN never heard of it. So he explained and irdered my husband to get a special CTScan for Amyloidosis. My husband was diagnosed with Cardiac Amyloidosis, a condition where certain protein chains accumulate in organs, in ly husband’s case, his heart. That was the reason he developed Right Heart Failure. After being receiving treatment for it, Vyndamax, I give thanks to God, all those symptoms that made him sick, are gone. He is feeling much better with more energy.
I am not saying that your wife has Amyloidosis in her stomach but I suggest if you can to call Mayo Clinic and ask for the GI department. And when you are there you might ask them what do they think about Gastrointestinal Amyloidosis.
Amyloidosis is a very tricky condition that affects many organs and physicians are not mentioning it to patients when there are no more answers related to patients with continuous symptoms. To clarify; I am not saying your wife might have this condition. But I think a call to Mayo Clinic could benefit her.
Wishing good health to your wife and that you can find answers to what is going on with her. Remember you need to rest and take breaks with someone you know who could stay with your wife so that you could do things around. Your health is important too. You need to be healthy for her. God bless you both.
-
Like -
Helpful -
Hug
1 Reaction