I'm getting worn down

[Annig83]

Hey all,
Okay, so here's the situation-
My boyfriend has been in and out of pain management for two years.  Recently, he was diagnosed with a pars defect in his back, and has esophagitis.  He had a scope of his stomach a week ago and since then, he has been vomiting blood, and can't keep solid food down.   He's been to the ER 6 times in the past month, and the doctors can't find anything wrong with him.  He's had more CT's than I have in my whole life.  They said the bleeding can be from the esophagitis, but he's had severe stomach pain for over a month now.  He is miserable.  He talks about how he doesn't want to keep living like this, and it scares me because he is normally, a laid back type of guy who just rolls with whatever comes his way.

The ER doctors told him that he can't come back because he's been there so often... his old pain management doctor was notified of him being there so often, so apparently they think he was med seeking... which definitly isn't the case.  I've never seen him so upset, and in so much pain.  He won't talk to me about it, and when he does, he gets frustrated and ends up taking it out on me.  He's supposed to see a new pain management doctor in two weeks, and I hope that they actually help him, because I don't know what else I can do.  He's lost 10 pounds in a week from not eating.  He refuses chicken broth, or anything soft because he says "If I want to eat I want real food".  I understand that, but if liquid is all he can tolerate shouldn't he at least do that?  He keeps telling me not to worry cause it won't help.  He says "if something happens to me, then maybe the hospitals will listen?"  He says "I just want a minute without pain in my stomach, but that's apparently too much to ask for, I hate my life".  It literally makes my heart break. 

I've been doing so well with accepting my own disease, and having to do CCPD every day, and now just worrying about him has started to take it's toll on me.  I haven't been eating well (I'll go all day without eating and then just have a bowl of cereal at night before bed), I barely get any fluid off anymore, and I feel depressed a lot, which ends up causing me to stay up past 4 am and sleeping till noon.  My boyfriend gets up with our son, but I feel like I'm missing out on a lot during the day.  I still play with my son and take him places, but I feel like I'm not being the good mother I should be. 

I don't know what to do, or think, or even say since I feel anything I do say doesn't help. 
Any advice or kind words would be appreciated

[okarol]

My brother had a similar problem. They had him swallow a tiny camera and it found a bleed.
Pain meds can do bad stuff. It's an end ending cycle.
I wish I had an answer. You need to try to get help, counseling, support... something.
Your illness is a lot to deal with, and with a child too, the pressure must be incredible.
Is there anyone in your family or his, who can help? I mean, like help advocate for your boyfriends medical care?
Sending you lots of {{{HUGS.}}}

[Whamo]

Do you have any lawyer friends?  Your hospital and/or HMO needs some intimidation.   

[billybags]

Wow, I don't know what to say about this. There must be some one at the hospital that he can talk too. Have they caused a bleed when they had  a look at his esophagitis, They could be missing some thing! It must be very tiring for both of you, its like a vicious circle. Could his pain meds be causing it. Let us know how he goes on.

[Sydnee]

 

I'm so sorry that your are both sick/ suffering. It's so much more exhausting to watch our partner go through pain. Not being able to fix it must hurt. I wish there was sometime I could do or offer. It totally sucks sorry.  We are here for you. try to keep your spirits up and your boyfriend's.

[MaryJoe]

I'm very sorry things are so painful for youright now.  I hope your bf finds someone willing to listen to him and help with the stomach pain and vomiting.  Is there perhaps another hospital in the area he could go to for treatment?  You mention that you feel depressed a lot - I'd be more concerned if you weren't a little depressed with all that's going on, and the tremendous amount of pressure you are putting on yourself.  Please remember you can't help him if you're not functional yourself.  You can't control what he eats, but you must eat yourself.  One bowl of cereal a day is not going to give you the energy you need to care for your son, or the nutrients you need to maintain your own health.  I don't mean to nag (well, maybe a little) but sometimes we lose sight of ourselves when we are concerned about our loved ones.  Please keep us updated on how things are progressing.  We worry a lot.

[Annig83]

Thank you all for your responses.  He's feeling a bit better now, but still no doctors will help.  He sees a pain management specialist on the 16th and hopefully this doctor will attempt to help him.  His GI doctor who did the scope won't see him.  He's called him 4 times in 2 days and he won't return the calls!!  I even got on the phone and cursed the nurse out for their lack of empathy and of course she replied that they won't help me on the phone since I'm not his wife or guardian...

The esphagitis is what is causing the bleeding, but he can't keep food down which has caused a tear where the esophagus is inflamed.  It won't heal because of the vomiting.  He's starting to keep minimal amounts of solids down which is good but it still makes me nervous.

I went to the ER last night for extreme flank pain... thought I had a kidney infection... turned out to be nothing....I think it was stress induced.  I did have pain in my cath. site too and they said there may be a surgery in my future to move it... the skin around the site is really red, and swollen... but it's not infected?  My doctor thinks it's irritation.  The catheter tunnel looks a bit "pinched" by fatty tissue again... which I've already had "tacked" but I guess I have more fat in that area than we thought  

I did eat today btw!   Eggs for breakfast, chicken breast for dinner with a potato and some green beans.  

I will keep you updated!  Thank you all again for your concern! 

[MooseMom]

Oh gosh, I'm stressed just reading about this!  How incredibly frustrating that no one seems willing to help your bf.  I am so sorry.  I'm glad, though, to hear that you are eating a bit better.  It's easy for us to sit here and tell you that you need to look after yourself; you already know that, but it is often hard to do when you have so much on your plate.

Yes please, keep us updated.  I hope the pain management specialist will be able to help.

[chinksnicky]

That is a lot to deal with I wish you both the best,be thankful you have each other,and a child who needs you.

[The Lady]

It would seem to me that they need to stop the damn bleeding!

I've had bleeding in my stomach when my Coumadin had a drug interaction and shot my PT/INR way into the stratosphere. It hurt so bad and I was urinating pee so they thought it was a kidney stone at first before my blood test came back. My pain was so bad the only thing that helped was a shot of morphine so I understand and feel terrible for your boyfriend...no one should be ignored or told not to come back when they are in agony.