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Strange question.

Feb 12, 2016 5:21 PM

So this is a strange question, but for anyone who has crps, or even of you don't have it maybe you will help me figure this out.
I have been having a very...weird...thing going on. I have no sensation of needing to go to the bathroom, like I could go days (and I have) with out going to the bathroom because I dont have any feeling to, so I just completely forget. But when I do remember to go to the bathroom to try to go, I will per for like 5 minutes straight. I'm not incontient, every once in a while there is just a little bit of stuff in my pants (gross I know, I'm sorry) but it doesn't happen often and when it does its never a lot. I have talked to my home nurses about it and they said if it continues to happen for too long, or I so become incontient, to let the doctor know. This has been going on for maybe 2-3 weeks. Its just really weird. I have CRPS in my stomach So I was wondering if its spreading or of my it is just affecting my body that way. If anyone had any explanation that would be wonderul.

Feb 12, 2016 7:17 PM

Jenna, I know you're saying that you're not getting the sensation to have to go. I am assuming you are referring to urinating?? I can tell you from experience that sometimes pain meds (especially when you're on high doses as I am) sometimes you DON'T feel the urge. I have to say though, if you're not having the urge to go, I would chat with the doctor and get seen by a urologist and find out if there's anything going on. Also, I'm certain that you are aware that you can also have the same issue with constipation. Same reason, high dosages of opioids deaden the nerves and slow motility leaving you constipated. Whichever it is, please get checked. I'm sure the LAST thing you want is to go to another doctor. But this could be an easily rectified situation. Sending you gentle {{{Hugs}}} and prayers that you get it all sorted and soon. 💕🙏🏻🌻

Feb 12, 2016 7:38 PM

I actually was at the doctor Monday about it, I went to the pain doctor last Friday he sent me to a urologist Monday. And they didn't find anything wrong except I had some minor swelling in my bladder. Which they said was no big deal so I just brushed it off. And it is just the urinating that I'm having a problem with, all though there are days that I dont have any urge to do the other thing either. (on so awkard when talking about things like this I can't even say the words lol) But my pain management asked me if I was still having my mom give me all those pain meds threw my picc still which I stopped about a week ago, or more, or less, idk my memory has gone to shit. But i just have up on giving myself like 5 different meds like fentanyl, morphine, and just a bunch of others because I'm not even affected by then anymore, like I dont even get sleepy any more from them so I was like I'm done with these and I'm sticking with my mj (i wasn't smoking while getting all of the meds, for obvious reasons) but its just so strange because on top of not having any sensation, I hurt 90% of the time when I do go to the bathroom, but stranger than that it hurts my stomach area, so Thats why I thought maybe its my crps. I'm just so confused because my home nurse, and my doctors have rules everything out that would be normal. So I'm just so confused. Oh and I'm not dehydrated either, I thought if I was maybe that Could be causing a problem but nope. So idk. I know its nothing dangerous I'm just really confused

Feb 12, 2016 9:52 PM

Jenna, it's very possible that since you've been to the urologist you have fully developed a bladder infection. The symptoms are accurate for one and the pain is quite bad. For a couple of days, try taking some cranberry juice and also hydrating as much as you can. I'd get back in touch with the urologist to let them know that the pain is worse and keep them updated. I'm sorry you are having to deal with another thing, you've sure had more than your share of shit to cope with. I don't blame you for sticking with the medical marijuana. I'd do the same thing if I knew it would help. Sending you {{{Hugs}}} and you know you're always in my thoughts and prayers. 💕🙏🏻🌻

Feb 13, 2016 8:48 AM

Jenna, I don't know how much I can type (scapula-arm pain). It could be an infx. But I have an enlarged bladder and developed Interstitial Cystitis. I don't feel the urge to go until my bladder starts spasming from being overfull. My urologist told me to go to the toilet every two hours and try, just to prevent the swelling & pain. Yes I get tummy pain too with it. I hope you feel better soon. 🙂🙏💕🌼

Feb 13, 2016 12:38 PM

Could I out the cranberry juice threw my feeding tube? It goes straight to small intestine as I can't handle anything going into my stomach

Feb 13, 2016 2:21 PM

If it is an infection, one thing that might help is Tonic Water, sorry I've forgotten the name of the drug in it, but I had a bad infection of some sort, couldn't pee, burning, so dehydrated I couldn't feel it. I don't know if anything carbonated can go through your tube or not, but try it if you can. Also, when CRPS spread for me, I adapted to almost never using the toilet, because it caused pain to use tp, or open the doors. I'd pee a little, but barely noticable.

Also, I had the infection (bladder?) diagnosed at an urgent care clinic. I've liked that there are usually several doctors, so you can get multiple opinions within a few days of each other, and check in on if meds are working.

One other thing, do you tend to avoid toilets because they cut off circulation? I did, because of burning, and numbness that just made every thing worse. I am not in the same situation, but definitely go to the docs again soon. I hope you feel better soon!

Feb 13, 2016 8:38 PM

Not sure on the cranberry juice. Maybe Terri or someone can help there.

Feb 14, 2016 7:21 PM

Yes you can tube the cranberry juice, and baby girl how much are you drinking?/if you drink just a little , you don't pee a lot..you may very well have a kidney infection or cystitis as said earlier. The main reason you are not peeing maybe you are not putting enough fluids in you. So , about the pain in your stomach , this may actually be referred pain from your kidney. Not your Crps..so increase the fluids, drink or push fluids thru your tube... When is the last time they verified tube placement? Is it in the right place, that could be the pain you are feeling...call me if you need..love ya sweetie..Terri

Feb 14, 2016 11:05 PM

Hi Jenna,

What I think I heard you saying is you forget to pee because you have no sensation to pee. Time goes by. Then you remember to pee and it seems like you pee for 5 minutes.

Just a thought. Through my daughter having Autism I have learnt that people with this and other diagnosis may use a watch with an alarm/vibrator, or a phone with a timer to remind them to go to the bathroom. Just like needing a reminder to take a medication. Hopefully if you empty your bladder you may be able to prevent an infection because of stagnant pee sitting around in your bladder.


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