Ct w/ and W/o contrast!!! GOINGG CRAZY!!!

[DLAZ]

They say it can't be my kidney stones causing so much blood in my urine or my localized right side pain I've had for 3 years... blood work is normal aside from vitamin d deficiency, urine cytology shows high WBC (acute inflammation) and gross hematuria but no infection! And now a normal-ish CT scan. Can stones cause pain? Can chronic overuse of ibuprofen alter my results? Has anyone gone through this? HELP!!

[cyberbarn]

Yes, kidney stones can cause pain. and yes overuse of ibuprofen can cause more pain. I can't remember but weren't you going to look into a pain clinic?

And remember to think about how positive that scan result is. Your insides have a clean bill of health other than the stones. That is really great news! Sometimes they can find 'incadenalomas' when you get scans, that is they find something wrong that they weren't looking for. So hang on to that good news!

[pennybobs1 in reply to cyberbarn]

ibuprofen can defo cause probs i would take them for anything n everything which lead to me having holes in the lining of my stomach

[DLAZ in reply to pennybobs1]

Yesss I definitely can tell a difference with bloating and heartburn since I cut down. It's crazy

[DLAZ in reply to cyberbarn]

It's always good news and I WISH I could be positive and happy about it but this pain has ruined my life and me and everything comes back normal. It's discouraging. I don't want something to be wrong but there is and I wish they'd find it.

No pain clinic yet, still seeing a urologist with upcoming procedures. That'll be my next step if they don't find it.

Thanks for your positively and good outlook, I always appreciate that.

[Mary-intussuception]

Hi again.

Did you try cutting down on the Ibuprofen?

Or are you still taking them?

Who is telling you that the stones aren't causing your pain? Did you ask them - well - please WHAT IS ?

Is the doctor going to do any thing now?

[DLAZ in reply to Mary-intussuception]

Yes!! I take 2 at a time and no more than 6 a day and 4 hours apart and my symptoms seem more clear without constantly overtaking that. When I'm laying down I have very minimal flank pain but when I stand up is when it hits me really bad and when I start moving- oh my god. I'm dying without ibuprofen. I can't stand longer than 5-10 mins and I can't walk around for more than 5 minutes tops, if that. It's so bad. I haven't been able to do anything. Seriously just laying down all the time.

They said the kidney doesn't have pain receptors and they doubt it's causing the pain, and think it's too much blood to come from one kidney but everything looks fine! They said keep my appointments and they'll call me if they can get me in sooner. It's not until July 18th!!! I don't know how I'm supposed to last that long. I'm feeling really discouraged. I've been researching and came across nephroptosis (floating kidney) it can only be detected if you're standing and get an ultrasound, I feel like calling my Urologist and asking if they can order that. I don't know if I should or not but this is a nightmare. My kids are restless my husband is so worried and I feel like an empty shell that can't move.

[Mary-intussuception in reply to DLAZ]

I suppose there is no harm in calling the Urologist and asking is there? What do think is best?

Did you try the paracetamol or cocodamol 8/500 before food and ibuprofen about 20 to 30 minutes apart?

Good pain relief from combination of cocodamol and ibuprofen. Must take some food before ibuprofen though.

You would have to take Lactulose medicine every day though, to prevent the codeine from causing constipation. This can be a good combination for acute and severe pain. I used to take these . My husband was also given these following surgery .

X

[DLAZ in reply to Mary-intussuception]

My brain is in a fog, I feel confused, and conflicted if I should call or not. I'm in between depressed but still trying, and rock bottom. I think I'm going crazy. Or just extremely overwhelmed. I feel like they think I'm crazy and if I call asking for a random ultrasound they'll say no or be weird about it. I'm sick of rejection from doctors but really need them to listen!

We don't have cocodamol here anymore. I tried looking and it was discontinued 2015. I have paracetamol and Vicodin and have been using those later in the day. It doesn't help with the pain but it helps with my mood.

[DLAZ in reply to Mary-intussuception]

Also! Yes I did ask them!!! They said they're doing their best to find out. They need to do better.

[Mary-intussuception in reply to DLAZ]

I AGREE !

They need to do better and sooner !!!!

X

ps

Did no one suggest Diazepam as a muscle relaxant? It only becomes addictive after 7 days a GP told me. So you could take 2 mg at night for two or three nights. Also during the day you could do the cocodamol & Ibuprofen. I think this might help.

It's crazy docs leaving you so long like this.

Can you phone them every day and tell them you cannot tolerate this excruciating pain. Your family are really suffering too. Can they please suggest something.

How would you feel about going to the ER when pain bad? How would your family feel about that. Is It something you have considered / discussed?

X

[DLAZ]

I would love diazepam, that would help me. It's also considered an anti anxiety medication here.

It is crazy, I could cry! I'll phone them on Monday and tell them. Last time I called in pain they said they can't do anything and I should go to the ER if the pain is super bad.

I've been to the ER more times than I can count, just in the past year!! Once I absolutely can't tolerate, is when I go. It's different now though, If I do nothing and sit or lay all day the pain is minimal but as soon as I stand up it's a nightmare. Should I just lay down forever or go to the ER?!! I'm at a point where I'm lost I have no idea what to do. Nothing seems like a good idea anymore. They never figure it out.

[Mary-intussuception in reply to DLAZ]

Did you contact the Kidney Foundation?

Where those phone numbers / email any use to you?

ps

Yes Diazepam is for treating anxiety here but it can also be prescribed for muscle spasm. I find after 2 days you get used to it though and loses effect. But if you can get prescribed a few then surely 2 nights would help.

Are you taking the Lactulose because of the Vicodin? Any constipation would make the pain much worse especially with Rectocele. Pressure can be put on the circulation and also spine and exacerbate the pain. I have Large Rectocele and pelvic floor weakness so when I stand - things 'drop' . So I have to keep bowels clear. I have suffered in the past with full bowel and Rectocele pressing on spine. That was when A& E doctor prescribed the Diazepam. It helped.

X

[DLAZ in reply to Mary-intussuception]

Yes I do take that. My rectocele is grade 2- not sure exactly if that's bad? I've been consumed by my other stuff. Where do you have pain due to your rectocele? Lower back and pelvic area?

I totally think I have a prolapsed kidney too. Just based on distinct symptoms. That's what nephroptosis is, the prolapsed kidney drops upon standing and causes pain. I wonder since I have rectocele, that maybe could be it? Am I prone to prolapse now? I know nothing about rectocele, it's all new to me.

I haven't contacted the kidney foundation yet, I plan too. I don't know what I'd say or where to begin. I wish I wasn't so overwhelmed.

[Mary-intussuception in reply to DLAZ]

You must be overwhelmed and exhausted. Might be best to try and get some sleep now and make a list of your symptoms just like you did on here and email to the Kidney Foundation with a copy of this scan report. Tell them about all your conditions, the Vitamin D deficiency etc. And how much pain you are in and how desperate for help. Ask if they can help.

You could perhaps do that tomorrow so they will have it for Monday. If I were you then I would phone their helpline when they are next open. Is that Monday morning or every day?

If you go onto their website you can put your state / zip code in and see if they have an office near you or any events.

X🐥