Crohn's member with polycystic kidney disease

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Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/15/2009 5:16 PM (GMT -6)   
This is great news.  I have benefited greatly from the Crohn's forum. Welcome everyone!!
 
I have polycystic kidney disease but just recently had to start taking blood pressure meds. The only real complication I have had is when a cysts bursts. OUCH! I am looking forward to hearing from everyone.
 
Elizabeth     :-)


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 6/15/2009 9:30 PM (GMT -6)   

Hi Elizabeth and Welcome!

I am always on the Ostomies forum and have formed a wonderful family their. I'm so glad that this forum has been started.  I have chronic kidney stones and have a slight decrease in kidney function.  I totally understand your pain cry .  I'm having surgery yet again tomorrow to remove a nephroscopy tube that I've had in since May 7th.  I got c difficile following that surgery because my urologist over medicated me with antibiotics so I now have a new urologist 3 hours away.  He's removing the tube, a stone and finding a blockage that I have in the kidney and putting in a stent.  I usually get stones each year but they seem to be getting progressively worse; I'm hoping this new dr can find the cause and help prevent them.

I'm looking forward to talking with others that have similair experiences so that we may learn and support each other.

I wish you the very best!

Judy


 
 
Judy
 
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/16/2009 2:50 PM (GMT -6)   
Hi Judy,
I hope your surgery went well! I hope your doctor figures out why you are getting all those kidney stones. I know from experience they hurt like heck. Just went to my nephrologist today and my kideny function is not normal but hasn't worsened in the last 6 months. Keep me updated.

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/17/2009 1:25 PM (GMT -6)   
Hello all..... Irishmom4 you are the first person on this board that I have posted too that has PKD. Wow! I'm still in shock! When you said OUCH I fully understand. I'm still coming to the acceptence of this disease. Mine is not going well. My PKD has caused nerve damage. So all my kidneys read is pain all the time from peeing, sleeping to moving.

It nice to meet you and hopefully we can share information and updates....

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 6/17/2009 11:25 PM (GMT -6)   
Just a thought...how about one you of with PKD post a PKD thread and share what your experience is and maybe someone who doesn't know about it may learn something or maybe even ask their doctor if that is what they are dealing with!?

Sara-Migraine/Headache Forum Moderator
Battling headpain for 17 years.
DX: occipital neuralgia-radiofrequency nerve ablation every 6mo
 
Thanks for Visiting HealingWell.com, Please Donate to keep Healingwell alive!
 
 
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LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/18/2009 5:15 AM (GMT -6)   
That is a great idea I will start one when I get off work today. Thats is IrishMom4 hasn't already. Whoever gets there first..lol

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


klab
New Member


Date Joined Feb 2018
Total Posts : 2
   Posted 2/28/2018 10:46 AM (GMT -6)   
Hi All!
I am new to this forum. I was diagnosed with Crohns in 2014 after having my 1st child.
I was diagnosed with PKD in 2016 after having my 2nd child. My Nana died from PKD after being on dialysis for a few years, and my Dad received a kidney transplant for PKD.
I am 31 years old and have 2 very active and busy children.

My question is does anyone have any experience with exhaustion? I get a good 7 hours of sleep a night. In the mornings it is near impossible for me to get out of bed and start my day. I have no desire to run around and play, to clean or to do any project - things that I enjoyed in the past.
When I get home from work I sit on the couch and veg until bedtime.

I am on Zoloft for mild depression and anxiety.... I have a Dr. appt with this Dr. soon and will also bring up these issues. I will also bring up issue to my Kidney Dr.

I want so bad to be the person who wakes up happy and energized in the morning, and can get thru their to do list... Have fun with the kids and keep a tidy (not spotless) but tidy home..

I am not the best eater and know that is something that needs to be worked on as well as drinking more water. I have to be careful with vitamins and supplements because of PKD and Crohns... But does anyone have recommendations or things that have worked for you?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16410
   Posted 2/28/2018 12:02 PM (GMT -6)   
Klab, I happened to see your post & wanted to let you know this forum is very slow. The last person to post on this thread was back in 2009, I don't think you saw the date.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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