HER2 Support Group Forums - View Single Post

jml · 08-18-2011, 05:41 PM

Yaaay! Stable is good!
So glad for you. So nice to be able to take a nice big breath and exhaaaale!

I have had GI problems for months & months - from severe diarrhea due to the different chemo combos, then IBS like symptoms including a really hyperactive gastrocolic reflex- as soon as a piece of food touched my lips I would immediately feel like I had to have diarrhea.
And then after a really difficult & painful bowel movement I could spend up to 2-3 hours trying to get everything to stop spasming. Finally I'd just take an oxycontin and completely knock myself out.
If my GI was empty, I was perfectly fine. But if I ate, I would schedule 2-3 hours in case I had an "episode".
I believe it's proctitis w/levator ani syndrome.
Those spasms are OH SO PAINFUL. I'm so sorry you're dealing with that! It's seems like once you get messed up down there, everything is gets hypersensitive and hyper active.
I know you said that you'd prefer to prioritize your lung nodules, but if you're not symptomatic & find some small portion of time to address the fissure, which is a daily problem & discomfort, I'd encourage you to go for it.
I've finally gotten things under control and I can't tell you what an amazing difference it is to feel like every day isn't dictated by my GI.
My GI doc & Onc have started me on a couple of things -
Hyomax - for GI cramping. the directions say to take when you feel a spasm coming on, but I would just take 1 twice a day, to keep things relaxed, and then also if I had a spasm.
Lomotil w/Atropine - lomotil for the diarrhea & the atropine helped with the spasming. same thing, just took it on a regular daily schedule.
Heating pad - I wasn't able to sit in the hot bath because I could get so restless with the spasms. But with the heating pad I could get up and walk around, stretch, then sit on the heating pad again.
Ibuprofen - just seemed to help everything.
Lastly, this is going to seem weird, but when I would cramp up, the only position I could stay in comfortably was "downward facing dog" - it just feels like it keeps the rectum on a slight stretch until the spasm would finally release.
So after each BM, I would take a Hyomax, some Ibuprofen, stretch in downward facing dog, plug in my heating pad, drape it over my low back until I could stand up or sit comfortably, then sit on the heating pad.
And take long breaths and try not to panic and get stressed and tense.
Oh and the most difficult but most important thing for me was to try and get off the comode as soon as I knew my bowels were empty-the longer I stayed there and strained with the urgency & spasms, the longer the aftermath/ "episodes".
I hope something I've shared is helpful to you.
Things are 85% better for me, which is so great & I can only hope that you can find some relief soon!

Keep the Faith~

Jessica

08-18-2011, 05:41 PM	#7
jml Senior Member Join Date: Dec 2006 Posts: 415	Re: My News Yaaay! Stable is good! So glad for you. So nice to be able to take a nice big breath and exhaaaale! I have had GI problems for months & months - from severe diarrhea due to the different chemo combos, then IBS like symptoms including a really hyperactive gastrocolic reflex- as soon as a piece of food touched my lips I would immediately feel like I had to have diarrhea. And then after a really difficult & painful bowel movement I could spend up to 2-3 hours trying to get everything to stop spasming. Finally I'd just take an oxycontin and completely knock myself out. If my GI was empty, I was perfectly fine. But if I ate, I would schedule 2-3 hours in case I had an "episode". I believe it's proctitis w/levator ani syndrome. Those spasms are OH SO PAINFUL. I'm so sorry you're dealing with that! It's seems like once you get messed up down there, everything is gets hypersensitive and hyper active. I know you said that you'd prefer to prioritize your lung nodules, but if you're not symptomatic & find some small portion of time to address the fissure, which is a daily problem & discomfort, I'd encourage you to go for it. I've finally gotten things under control and I can't tell you what an amazing difference it is to feel like every day isn't dictated by my GI. My GI doc & Onc have started me on a couple of things - Hyomax - for GI cramping. the directions say to take when you feel a spasm coming on, but I would just take 1 twice a day, to keep things relaxed, and then also if I had a spasm. Lomotil w/Atropine - lomotil for the diarrhea & the atropine helped with the spasming. same thing, just took it on a regular daily schedule. Heating pad - I wasn't able to sit in the hot bath because I could get so restless with the spasms. But with the heating pad I could get up and walk around, stretch, then sit on the heating pad again. Ibuprofen - just seemed to help everything. Lastly, this is going to seem weird, but when I would cramp up, the only position I could stay in comfortably was "downward facing dog" - it just feels like it keeps the rectum on a slight stretch until the spasm would finally release. So after each BM, I would take a Hyomax, some Ibuprofen, stretch in downward facing dog, plug in my heating pad, drape it over my low back until I could stand up or sit comfortably, then sit on the heating pad. And take long breaths and try not to panic and get stressed and tense. Oh and the most difficult but most important thing for me was to try and get off the comode as soon as I knew my bowels were empty-the longer I stayed there and strained with the urgency & spasms, the longer the aftermath/ "episodes". I hope something I've shared is helpful to you. Things are 85% better for me, which is so great & I can only hope that you can find some relief soon! Keep the Faith~ Jessica