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Yes be careful w/ the Nitro paste.
That stuff can drop your BP in heartbeat (or two) and will at the minimum give you the worst headache of your life.

I had a friend in nursing school that was tiny, like 5'0" and 80 ish pounds. One day in clinicals she got some on her hand and walked over to myself, and the instructor as we were talking about a pt of mine, and she got out "I think I got nitro on.... " and down she went. Luckily she was tiny and we caught her so she didn't bonk her head. She came to rather quickly but it was an important lesson for sure.

Yes the pain could be from gas. He doesn't feel and sense pain like you or I do, and the gut doesn't have pain receptors, they sense the fullness and stretching of the bowel/intestine and that is what generates the pain, it can also cause vagal responses, so when the pain is bad without bearing down can cause BP to jump up, and when bear down the vagus nerve (controls the diaphram) can be activated, and cause a drop in BP to the point of slowing/stopping the heart for a few seconds, and of course causing people to passout. This may tie into his BP issues as well. Just a thought. If he is sensing more pressure in gut when he is upright this may be driving that BP up. I would ask if this could be vagus stimulation playing a part in it.

There's tons of literature out there about vagus nerve stimulation and training to help cure you of all your ails, which I don't personally buy into, but if you do a quick google search you will see what I mean.

The intense pain, the gas, the diarrhea sure sounds like a Crohn's disease attack. I've seen my sister suffer with this for 15 years. She is now on Remicade infusions and doing much better.

Thanks for all the info y’all.

We are finally getting out on probation. I said probation because I worry that we might be right back. But I’m going to try to be positive.

They are taking one last lab to check sodium levels and then we’ll be gone. We will be out just in time to go to his last appointment with his PCP before the doctor retires. May his butt grow together!

I’ll definitely ask about the Crohn’s situation and see if that could be part of it. But I am thinking that it is more likely to be from the MiraLAX, LACTULOSE, Senna S, and Colace that they are giving him every day. I finally ask and they stopped the lactulose this morning.

I have 1 million questions for our primary care physician and I sure do hope that he has some answers. I finally did get out of the doctors that the Foley was for a month or two and then we would attempt straight cathing for a couple of weeks to see if that affected his blood pressure, and if so, then back to the Foley. If not, then we will go back to the intermittent cathing.

She won’t give him any pain meds to take home. That is problematic, because when he has one of his pain episodes, I’m not sure what to do. The pain is excruciating and he screams. That’s why we usually go to the ER. She did not want to send home any opioid product because it would cause the blood pressure to go too low and with the nitroglycerin and all the other stuff we’re trying to do, she doesn’t want to screw up the balance.

Hopefully the primary care physician can give us something.

Also, I’m going to call the neurologist who implanted his neurostimulator to see if he thinks it might be pain that could be regulated with another electrode in a different spot in his spine.

Never say never.

Again, thanks so much for all the help, And for hanging in there with me.

I guess this is it for the long long long, too long topic regarding our latest adventure. Hopefully, there won’t be anything else to report, and we won’t be back anytime soon!

If it's gas pain, wouldn't it be better to fix the gas rather than take pain medication?

How frustrating to keep going to the hospital and having no answers.

Were you able to get H's medical records before you left?

[This message edited by little turtle at 9:43 PM, Thursday, September 1st]

Yes to both!

I think H might finally believe me that at least sometimes the pain is from gas. In the hospital I turned him and let’s just say it was obvious there was lots of gas.

Then today when we finally got home, he seemed to be a bit uncomfortable. I suggested we turn him to his right side, and he could have blown up a life raft! 🤪

And now his belly doesn’t look distended at all. So, maybe GAS is the big abdominal pain mystery.

Whatever…it’s fine with me just to have an idea of one thing I can try when it flares up.

I definitely would prefer to have an option like that rather than pain meds. He can’t really even take them now because of how they will lower his BP even more.

And, yes, I got his records for this last hospital stay. I also had them fax them to our PCP.

Our appt wasn’t what I was hoping for really. When we still had a few things to discuss, he had to excuse himself to tend to someone who came in with chest pain.

So when we left, from what was supposed to be our last time to meet with him, he said that he would just come up with something else in a month or so that would be considered necessary so we could be sure we were all set with a new PCP, and a game plan moving forward.

[This message edited by WhatsRight at 4:57 AM, Friday, September 2nd]

Whatsright, glad to see you are hanging in there and you are HOME. Now maybe both of you can get some rest. Hospitals are so tiring for ALL involved.

Yes ma’am!

I have slept off and on for three days. Husband too!

I wanted to ask a quick question…

As I have said, the few times my husband has started having belly pains again, I have rolled him onto one side, and the gas situation is taking care of itself, so to speak.

100% of the time since we have gotten home from the hospital, this has worked. I feel like we’re just catching it sooner and so it never gets to a really bad pain level.

Last night it started hurting again and I rolled him over on his side. But he was so upset. Emotional. He was sobbing. Acting a little crazy. When I finally got him to answer me, he said he so was afraid it was going to get bad again.

Is all of the stress of all of this happening to him finally messing with his mind? Or is this a common response to having been in such pain and in such bad shape throughout this summer?

I’m not sure how to best help him. And I know if I let this go, it’s possible his emotions can cause some real issues.

My main focus is that he will be able to stay at home. I don’t want anything, physical emotional or mental, to get in the way if that’s what he wants.

Any ideas exactly what is happening? And what I can do?

Is it possible that something is happening emotionally with him, regarding his health, due to all of his suppression throughout his life?

[This message edited by WhatsRight at 4:57 PM, Monday, September 5th]

Hey What's Right... how you doing? How's your H? I don't know how to answer your question about his emotions. My guess is that he was afraid of having to go back into the hospital again. Hope you're still all at home!

Hi, thanks for checking in on me. You’re so sweet!

To be honest, I can’t remember where I left off before. He has had a total of two infusions through a picc line at home at this point. The first one was mirapinum, and this last one just a couple of weeks ago was Zosyn.

His blood pressure is calming down a bit from the bouncing up and down. It’s possible that is because he has an indwelling catheter and his bladder doesn’t get dystended and then go back down. He will have the Foley for one more month. Then we will go back to intermittent cathing, to see if the blood pressure starts going out of whack again. If it does not, we will continue with the intermittent cathing, because the new urologist has said that it is undeniable that intermittent cathing will definitely result in fewer infections than the Foley. If the BP does get erratic again, I guess it will be back to the Foley. It’s close, but a really bad BP trumps infection.

His demeanor has changed again. He never speaks unless spoken to. He says he will be doing better re getting up, but of course he doesn’t. I have let him alone. I explained that deciding to stay in bed was not giving up. It is just resting from all he has done his whole life…especially considering his disability.

He rarely asks for food. So I got some ensure. Also, I just take food to him and he decides whether or not to eat it. Instead of him asking for something, or giving him ‘a hard time’ about eating, I just go with what he does.

While he lies in the bed, he doesn’t even have the TV on much any more.

The home health nurse is asking our PCP about something for depression.

Every day is different than the last.

I’m just trying to brace myself for what is next.