Kidney stone experts?

[jonnell]

Hi just Jennas mom probabaly shouldnt post this here but I know sjs has kidney involvement,  Ive had kidney stones since Ive had Jenna,  I pass one hear and there and am in pain for a little while.  Well this weekend I was in severe pain, couldnt even walk so Rick insisted I go to our local er.  They did a full body cat scan and found that  my kidneys are loaded with kidney stones and I have Fibroids in my uterus along with diverticulitis disease,  Can some body explain what the heck is going on, Im only 39 years old is all this normal?  I dont know what doctor to c or what I should take care of first? any advice.  Hugs and Kissess   Jonnell and Jenna

[lynnmarie219]

Hi Jonnell,


I'm so sorry to hear of everything you found out with your body scan...but I'm glad that Rick insisted you go to the ER and that you know what is going on now.

Did the ER doc recommend a follow up through any particular doctor? Any treatments or medications or even suggestions?

You have several issues going on with several organs involved.....a Urologist for your kidneys, a gastroenterologist for the diverticulitis, and of  course a gynecologist for the fibroids in your uterus. I would say to maybe start by calling your GP to see what he/she recommends and go from there...maybe they can help with some referrals.

I hope you get all of this resolved to at least alleviate the pain. Good luck, lots of hugs, and let us know what you decide! 

[jonnell]

They said a urologist, so Ill make that call first.  Im a little worried about the fibroids though,  Ive been reading some people have to have hysterectomies for that,  I have very heavy and painful periods since Jenna was born I wonder if that is why?  Well I guess its off to more doctor appointments thank God I have Rick and you guys or I would lose my mind(not that there is anything left to lose)   

[lynnmarie219]

Ok...I'm glad that he made a recommendation for that......as it would seem to be the one that is causing the pain right now....good luck in getting in to a good doctor soon...it should help to tell them that you ended up at the ER and they wanted you to get in to the Urologist for an appointment.


I know this is easier said than done, but try to remain calm and take it one thing at a time. Good luck to you my friend and let us know how it goes for you!

[Chickpea]

Hi Jonnell

This is a lot of information for you to take in all at once!  You must have been feeling pretty low for a while with all that going on, you poor love.  It's great to hear that Rick is taking such good care of you, as always.

I agree that the kidney stones need to be sorted out first.  Many, many women have fibroids and live with them with no major problems but they need to be investigated.  Maybe you could talk to someone at a pain clinic about these conditions, as well as the diverticulitis? 

For now you need to think about the best ways of building up your strength, eating well, relaxation and rest options, and all sorts of stress and pain beaters.  Do you know someone who gives massages?  Some local colleges offer free treatments - massage, aromatherapy etc - from students.  Or maybe there is an organisation offering support for carers - and you certainly qualify as a full-time carer - where you could get some practical help?  Now is the time for you to get support, not give it.

Let us know how you are feeling.  We hold you in our hearts.

Thinking of you - Chickpea

[irish]

Jonnell, Man, it sure is the pits when you find out you have health issues. Like you said Where to start first.

I, too, think the urologist is the one to see first as you will have to find out what is causing all those stones. Many times people are chronic stone formers and have to leave certain foods out of their diet. Also, many people don't drink enough and this helps the stones stay in the kidneys instead of being washed away when they are really small.

The diverticulosis is a very common thing in this day and age. We eat refined wheat, etc and none of us get enough fiver in our diet. Without fiber out colon has to work really hard to move the waste products along. When the colon works this hard it develops little outpouchings that can get filled with the digested waste products and develop infection.

When you just have the outpouchings this is called diverticulosis and when they become infected you have diverticulosis. It helps to eat things that have fiber like apples, raw vegeble, oatmeal, etc. Talk with your doc and he can give you a sheet on what foods to eat. Just be sure to drink plenty of water to help "water down" the stool so that it is more easily moved through the digestive tract. When we don't eat enough fiber our hard stool makes the colon have to work too hard and the wall of the colon pop out literally from the pressure forming the little outpouchings.

Diverticulitis needs care and sometimes trips to ER. Usually treated with 2 kinds of antibiotics. My hubby has this and has had a few trips to ER. He has learned what he can and can't eat. The one time we figured out that it was the Pearl tapioca that I had made for him. This is a tapioca that needs prolonged cooking and the tapioca looks like little pearls---apparantly one or two got caught in one of the dicverticuli (or tics as the docs call them) causing the infection. No more pearl tapioca for him!!! Good luck to you girl. Irish

[wednesday mc haggis]

Jonnell

   sorry to read all this.

   Honestly got to stage in life i just dont think anything is normal or abnormal just way it is is how i look at it now.

   Kidney stones, there is a technique called lithrotrypsy  ( spelling)  basically high frequency sound waves, that break the stones up and allow you to pass them in small shattered pieces, hopefuly that would work with you, and yes urologist is your man.

    Fibroids, my mum had them, she was offered a hysterectomy,she was having a small amount of incontinence due to them pressing onthe bladder ,  but she spoke to her homeopath and she said they shrink back at meonpause ( oestrogen feeds them they shrink once that levels drop)and advised for her to just leave them be,  but told her to drink less caffiene , funnily enough the stress incontinence stopped.So dont run at a hysterectomy  see how they affect you first.

   As for the diverticulitis,  ok im banging on againj ( sorry) but gluten really flares up the bowel, might be an idea to try cutting it out, see if it helps your bowel, works for lot of ppl

Hope all goes well, and your not in pain , worrying time i know, get a good urologist and speak it out with them

T x

   

[jonnell]

Thank all of you for the advice,  its nice to know im not alone.

[Leisa]

Hi Jonnell, How are you feeling today? Did you get to see a urologist today? Please let me know how your doing Hugs and kisses to you and Jenna

[jonnell]

Feeling better today, waiting for call back from urologist.  I passed one stone only who knows how many more lol.   Hugs and kissess   Jonnell and Jenna

[kathyl]

HI,
I feel for you.  I have had many kidney stones.  I learned to drink a lot of fluids.  When passing one I just sit and drink water or Gatorade to try to flush it out.  I use breathing techniques and relaxation for pain.  It's kind of like having a baby anyway.  One thing that helped was avoiding large amounts of calcium.  I had to stop calcium supplements.  I also used to have fibroids and heavy bleeding.  Instead of a hysterectomy, I ended up with an endometrial ablation where they cauterized the lining of the uterus.  But you are young and after that procedure you can't have anymore kids.  I had it in my early 40's.  I stopped being anemic.  Back to the kidney stones, they hurt.  I had my first one at about your age.  Are you straining your urine to catch them so the doctor can see what kind they are?  I had to do that and they were the calcium kind so that's why I avoid calcium.  I will probably get osteoporosis but so it goes. Hang in there.  I enjoy the picture of your daughter in your posts.
KL

[Victoria05202000]

Hi Jonnell,

Chiming in late here...sorry. I had my first kidney stone at 29 years of age. I am now 37 and have had 3 lithotripseys, had 2 surgically removed, and stent placement  to help pass the stones 5 times.  I am a stone maker! My dad is too...they think it is part genetics on why I get them. Also what WAS my diet. A lot of soda, tea, calcium, high mineral enriched foods. I make both kind of stones...I forget the correct terminology of what they are called.

I even had a stone cause acute renal failure because it caused a blockage. I have many stones in both of my kidneys. I was given the option to let them try to move them, break them up, and put a stent in again to help get rid of them, OR just wait for the next episode. I said I would wait until I had another attack because there is no gaurantee that it would work and clean out the ole' kidneys anyway!

Of course now my kidneys are not any good right now....hence the upcoming transplant. Don't worry having kidney stones is not related to CKD and needing a transplant.

I am not familiar with the other problems you are experiencing. I hope you are feeling better!

Take Care!
Vicky

[DanzGrl]

Hi jonnell,

I had kidney stones when i was first diagnosed.  Had to have emergency surgery because one got lodged.  A urologist is the one that helped me through that and then I met with a kidney specialist who told me i had renal tubular acidosis - common in sjogrens patients.  The simplist explanation is that the tubes connected to the kidneys do not remove the acid from my system as they should.  In turn, i was getting kidney stones and horrible acid reflux.   Now I am on a medicine that alkalines my body for me.   Just thought I would share my experience with you..

[ErinG]

Hi Jonnell,

You will hopefully know a lot more after you see the urologist.  My kidney stones are calcium-oxalate, and they determined this by doing a 48-hour urine collection and analysis.  Depending on the type of stones you have the treatment may differ.  I am on a low-oxalate diet to keep new stones from forming, and I take potassium citrate to try to dissolve the stones I already have.  I have a lot of stones in both kidneys and I have mild to moderate pain in my left kidney all the time.  My nephrologist said he will do another ultrasound in 6 months to see how much of a difference the medication has made.

I hope your visit with the urologist sheds some light on everything for you!

Erin

[jonnell]

Thank all of you for the information,  I will let you know how my appointment goes, thanks also for the concern and support, sometimes things just get overwhelming.   Hugs and Kissess  Jonnell and Jenna