Help?

Hi sag2962. I think most people confronted with your health problems would wish to die- any escape sounds good. Please focus on getting improvement for those problems. Every small improvement will lessen spasms and make life more bearable.

Probably Bowel program is the easier place to begin since you have more control of your own diet and program for elimination. Please describe how you handle both of those things and we can then offer suggestions from our own experience. Do you have hemorrhoids? sounds possible.

It took me many years to figure out what to eat and what products to use to make bathroom time no big deal. That process has also improved my immune system so the chronic UTI is only a small annoyance.


Second question is: what is your situation for medical care. Chronic UTI is common now because doctors only treat when the UTI is affecting out lives, but obviously yours are. What have you been through with this? Ho often were you treated with antibiotics? Which ones? I know it seems strange to tell strangers such details but we all share the same problems and often someone who has been through the same thing can help.

hi sag2962, and welcome. I feel the same about myself at times but than I remind myself about what I do have, instead of what I don't have. it sounds like u have a loving mother and a home, that's quite a bit right there. think of those things when feeling crappy.

Thank you all so much for responding it really means a great deal to me, because I’ve just felt so alone in all of this. I have been trying to figure out what the underlying problem is for the increase in spasticity. I’ve recently had a cystoscopy and the doctor said that my bladder is extremely irritated and inflamed. It’s completely covered in red patches and there was no white areas like a normal bladder. He gave me Macrobid as a preventative to take three times a week and he gave me Amoxicillin 500 mg for when an infection is present. I just finished one course of the Amoxicillin and I have started my second and I still don’t feel any better. This is also my second urologist because the first one I had a problem with for doing certain procedures on me without anesthesia and I would get automatic dysreflexia. She also treated me with disrespect. I have been on so many antibiotics for this and none of them seem to be effective. I’m allergic to Cipro, Bactrim, and sulfa drugs so there goes some of the better medicines for UTIs. I was getting a powder drug (I can’t remember the name) that actually responded well, but because of my insurance the process of getting it would take over a week and my UTIs started turning into kidney infections. I’m at a loss because I don’t feel I have any options left for a medicine that responds to my infections. As for the other, the blood is not hemorrhoid blood, even though I deal with that as well, this blood is a much darker red and I just know something is not right with my intestines. I was supposed to have a colonoscopy done in November, before Thanksgiving, but I pushed for an Endoscopy as well, so it was switched to December 5. However, they messed up getting me in the hospital for the prep because I cannot do it at home, since I will get autonomic dysreflexia, so the endoscopy was only done. Which, I’m glad I pushed for that because precancerous polyps were found, so now I have to have that done yearly. As for the colonoscopy I was told they would call me to reschedule and when they didn’t I got frustrated, so I went up there and was told the next appointment they could have it done would be February 8. I don’t think these doctors understand that what is going on is more of a big deal for someone with our disability. Having to have this severe pain with the added bonus of increased spasticity and autonomic dysreflexia headaches. That two months is just an awful long wait. I’m suffering, but I’m trying to be patient. I did have this rant and it really help getting it out, then keeping it bottled up inside.

Tetra, if you don’t mind me asking what kind of diet is it that you are on because I’m interested in changing my eating habits as well, since everything I’ve been eating lately is causing pain, too.

Vintage, I am able to cook for myself if things are left within reach, but sitting longer than 30 minutes becomes extremely painful especially if I’m lifting or cutting, but I do try to do it a few times a week. I’m also terribly sorry to hear about you having have been in nursing homes I can’t even fathom what that was like for you.

Sam, I do also think about those things and I am grateful for a lot, (including the use of my arms) even though I’m aware it didn’t sound like it in my post. I just needed to vent that out that night, but thanks for the advice.

Lara, you are absolutely right and I am trying to get these things resolved, but it is taking so much time because my doctors seem clueless as to what to do with me and not all of them agree with each other. I have one doctor telling me to increase cathing when a UTI is present, while the other doctor is telling me to do it less because this is the cause of infections. I am going to try hard to make myself heard because I know my life means more to me than just feeling this miserable.

Once again, thank you all so much for the responses it’s much appreciated.

Sag sorry to hear you are having such trouble with all of this but sounds like you are getting some of it sorted out. Utis are a mess I am a T3 para and I have an augmented bladder now with part of my small intestine patched into the bladder wall so it introduced all kinds of new bacteria into the bladder that shouldn't be there I am always colonized now. I fight utis all the time I have to irrigate my bladder daily to try and flush some of it out to slow the infection down as antibiotics don't work well anymore. I take lots of Doterra oils to try and boost my immune system up it has been one rocky road over the last 13 years I have been exactly where you are and it's not easy it's a daily struggle but we are all here for each other especially. Would love love love to chat more if you have any other questions

I use doterra oils daily. Oregano and lemon work great on utis if I see any change in my urine I use the lemon and oregano in a capsule. Have not had a uti in years now. Right now my saving oil is copaiba. It is a very new oil for doterra. Doing wonders for my pain. I have gone from 60 to 70 Vicodin a month to about 10. I wish it was more available so I could say more about it. Right now it is only 1 per month. Mainly because people are getting amazing results in pain management. Once it becomes more available I will share more.
One antibiotic I never see on this forum is vantin.I had uti's back to back while in the hospital I was about to be put on something stronger that had to be administered by iv only, when a new doctor suggested vantin. My pharmacy had to order it in, but it worked very well until I was able to switch to my oils.
Back to your struggle, it is hard some days to be grateful for only being a para. Yes para sucks but every quad on here will tell you they wish they were a para instead. So sorry yours happened at such a young age. Life is not fair or easy,

Doterra offers deep blue capsules that have helped with pain they are highly concentrated I take up to 6 a day. I also use the deep blue oil as a topical treatment for pain I take all the ones you guys have mentioned as well as melaluca on guard black pepper lemon in a capsule daily as an immune system support and if I am getting sick or a UTI I take that capsule every 3 to 4 hours and it works wonders.

Just now, tonight, I drank Martinelli’s Apple juice for a little discomfort in my gallbladder area. On an impulse, I added drops of fennel essential oil, DoTerra brand (food grade), to my glass of cold apple juice. It was delicious!

Aha!
“Fennel may help support the health of the lungs and respiratory tract and can be added to water or tea to help fight sweet tooth cravings.* Fennel is also known for its ability to promote healthy metabolism, liver function, and circulation.*
www.doterra.com/US/en/p/sweet-fennel-oil

I got my DoTerra Fennel Oil from lavender,