I try not to do a whole bunch of these how I’m doing blogs because the reality is that there is not a LOT of change on any horizon for my situation. The stomach – it’s paralyzed – and to a severe degree. The treatments, I’ve exhausted them for the most part. The life, it goes on.
However, I do like to do these updates every once in a blue moon – because the reality is that “behind the scenes” I certainly have not given up hope. I still hope for a cure, I hope for a miracle and I hope for advancements in the treatment of idiopathic gastroparesis!
So what’s new medically – ayyyy not much really same old same old. In December I started having more “bad days”, I attribute that to the hustle and bustle of the season taking it’s toll, and so therefore not taking as “good” of care of myself as I should have. A few times I was off my feet for 2-3 days, but nothing bad enough to warrant hospital visits so that’s a plus. Two things I’ve noticed recently over the last six weeks are so are that #1 my tube is clogging a lot, and #2 I’m having an unusual amount of pain.
As for the tube – well it’s a surgical J tube, and if you know anything about tubes you know that means it’s small diameter and kind of delicate – so I try real hard to be cautious and careful. It’s a struggle some days, but it’s part of the hand I’m playing with. The pain I find a little more “disconcerting”, because normally I don’t have a “LOT” of pain. Being nauseated and vomiting are my benchmarks of day to day life, generally if I’m having actual PAIN I’ve graduated to “I need to be in the hospital” status. I know other people who have GP who in fact DO have pain all the time, and I count myself blessed as not having it. I am wondering what the future is holding in this department though.
Last year I had it explained to me that this gripping pain I feel is likely spasms in my intestines – and when the spasm occurs there is so much scar tissue in there that the scar tissue is YANKED on so to speak and wahhhh la – PAIN. There was one medication I was given for a short time to help with the spasms (which in turn would help with the pain) once before – but I could only take it for two weeks because much like regular pain medications it slows the gi system down. It’s such a double edged sword.
Funny THAT for me is a very touchy subject, the value vs. the harm of pain medication. I completely understand not wanting to give pain medication that will make the gut even LESS likely to work. I also understand that bad gut or not, it’s not good to LIVE on pain medication if you do not ABSOLUTELY need it 24/7. I in fact DON’T need it 24/7, it’s very RARE that I need it actually but when I’m in THAT much pain and feeling THAT badly – trust me doc. I need it.
I also understand the concerns about addiction – and so I do “get” all sides of the coin, but I think that doctors have to GET that each patient is an individual as well…and take each case into consideration with all of it’s specific points. Last May while I was in the hospital I was in fact on Dilaudid for pain, and one weekend the “covering doctor” who I had never met before came in and said “oh you can’t have that it slows motility”. I explained that I was aware of this, had discussed with my doctor at LENGTH etc. etc., and she shrugged her shoulders at me and walked out and cancelled the pain medicine. So I laid IN the hospital suffering until the next morning when my doctor returned, because the covering doctor has little to no experience with ME and with GP, and she feels that anyone with GP who request pain medication is “drug seeking”. I have to say that this apparently is quite common in the GP community and boy I’ve heard some horror stories.
Oh how I wish I could get my hands on that doctor today, I’d love to point out how she was “sooooo right” about us “drug seekers” – lol, my last narcotic was what ummmm June of 2015 when I got my new tube, my guts got back to “my normal” and those spasms and pain subsided. How horrible of her to make such “uninformed” medical decisions about MY care, based on HER preconceived notions that all GP sufferers are drug addicts.
What worries me though is – at times like this when my pain seems to be more severe and more frequent…am I going to suffer in the future like so many others. I’m blessed that my doctors on the whole have NOT treated me that way, and have respected my cries when it really has hurt just that bad. I suppose it helps that they “know me” and that I don’t request pain medication often and NEVER at home. I literally have only needed/taken it while in the hospital – it’s like my “episodes” have to be THAT BAD. I know others though who are that bad daily, what if that happens to me? That scares me and it’s been a real thought lately with these increased episodes of pain. The pain was gone 99% of the time until like November – but it’s continually become more and more frequent and more and more severe when it hits. It’s hard to describe really but it’s like GRIPPING, like a calf cramp – but it’s in your abdomen and it’s times ten thousand – the only thing I can really compare it to is hard labor pains. I literally lean against the wall and cry because I can’t move.
So I don’t know what the heck is going on in there really, I’ve been alternating NOT eating with eating, doing more liquid stuff trying to give my guts a “rest” and see if it all “straightens itself out”. I wish my tube would stop clogging and I really wish these pain spasms would take a hike, I could use a few less ‘bad days’ while I’m wishing on a star.
So what else…lets see…the last thing I’ll mention – well two things – are that as I said I have “hopes and dreams” still about this not being the END of the road for me. So on THAT “hopeful” horizon I have two things to share:
One – I FINALLY have a health plan that might cover some “out of network” stuff so I’m currently researching 3-options.
- One being a doctor in NJ that was recommended to me by the regional rep for my area from the pacemaker company.
- One being returning to the motility program at Yale New Haven
- One being a surgeon in Long Island who said he will review my case for consideration of gastric pacing.
So those things are all “on the table” and I’m doing the “leg work” on those fronts. In ADDITION to that a conversation with an old friend recently led me to do some research into the National Institute of Health in Bethesda, Md…and I’m currently talking with them about possibly joining a research study they have going “Evaluation of Patients with Gastrointestinal Disease”…so that is exciting to me. I’ll keep you guys updated on ALL of that crazy stuff in the weeks to come.
Wow this is a long one, I got myself all in a knot about that doctor who pissed me off six months ago – lol – I gotta work on maintaining focus! Anywhoots – as always it’s been a pleasure hope to see you again next time! As always ❤