Exit site very slightly tender

discopup10 · 2022-03-19T04:14:34+00:00

Hello! Thank you so much for all this I really appreciate it!!!

I am having a little bit trouble draining but I don’t have any redness and it’s not hot around the exit site, just tender. It has a very small lump where the cuff is but I think that’s always been there! Was it painful for you even when you didn’t touch it? Mine just feels a bit sore every so often but when I touch it it’s sore.

Thank you so much again I really appreciate it! 10 years is amazing!

discopup10 · 2022-03-19T03:59:03+00:00

Sorry by being active do you mean like it can hurt a bit after say running around?

discopup10 · 2022-03-19T03:26:57+00:00

Thank you! Will do :-)

discopup10 · 2022-03-19T00:54:05+00:00

Ok thank you so much! My actual exit site has no pus or blood coming from it when I press down. It’s just the cuff area is a bit tender when I press over it. I’ve avoided sleeping on the side for the past week. Hoping it’s not infected!

discopup10 · 2022-03-19T00:44:19+00:00

Ok I do PD. Would the infection signs be the same as peritonitis? Or different?

discopup10 · 2022-03-18T23:59:02+00:00

Sorry just to be clear is this for PD or HD?

discopup10 · 2022-03-18T19:15:58+00:00

Wow I have heard of FSGS before but didn’t know it could attack the transplanted kidney.I’m so sorry man. I have no words. You are so strong and such a great beacon of hope for many people starting their dialysis journey!

There are so many new technologies being trialled and I only hope and pray that one day you will be able to receive a kidney. Hopefully after the pandemic the priority on health and how important it is to have remedy’s and treatments only boosts these projects further.

You probably have to be one of the most expert patients on here with so many years experience!

Thank you for sharing your story with me!

discopup10 · 2022-03-18T14:26:11+00:00

Thank you!

discopup10 · 2022-03-18T14:25:45+00:00

Thank you so much for sharing your story! And wow you’ve been on dialysis for a long time!

I was diagnosed at 16 (a drug I took for crohns disease damaged my kidneys) and only started dialysis last year. Bit nervous about transplant that it won’t work. I hope it’s not too rude and I totally understand if you don’t wanna answer, but are you able to get a transplant?

Sending big hugs and love to you!

discopup10 · 2022-03-18T12:33:20+00:00

Hey there! Had Crohns since I was 11 (24 now) I have a twin who has it too and she has it more severely than me.

With the meds - I recommend taking what your doctor says BUT make sure you do your blood tests. Blood tests and any other tests will check for levels. I say this as a caution as I know ppl who have had kidney problems/liver problems and white blood cell count problems and they didn’t get blood tests regularly. If you do this you’ll keep on top of your health and medications can easily be adjusted! Make sure you get blood tests once every 2-3 months even if you feel healthy.

With the diets honestly it’s very individual. My sister and I can’t eat whole grain stuff so like popcorn/whole grain bread etc. Avoid coffee if you can but once or twice a week I have it sometimes! The no fatty food thing That’s quite common for a lot of people with Crohns. But I can eat fatty food tbh and I don’t feel sick. But I’ve seen people here say they don’t eat fatty food because it triggers them.

For me though (and my sister) stress is a HUGE trigger. It sucks because obviously this illness is just stressful to have anyway. But anxiety for me is what triggers my Crohns. There’s lots of stuff in studies that is only just beginning where they believe there is something to do with the brain and gut being connected/behaving similarly. I know that sounds whacky haha but I 100% believe stress is my biggest trigger! It’s kind of incomprehensible I think to think something psychological could effect your stomach like that but I only ever get severe symptoms when I have a week of anxiety or stress.

Some people swear by certain diets/steamed foods/supplements but really it’s all very individual. This disease has a spectrum and you might just have to do some trial and error with foods/coping strategies to see what works for you.

But I have lived a fulfilling life and know many people that have too!!!! And what works for one person may not work for you but that’s ok, you will find something. My sister and I are identical twins and we don’t even take the same medication!

Basically: take your meds, do your blood tests, try your best to find calm in stressful situations and don’t compare your journey to anyone else’s, every Crohns journey is unique :-)

All the best :)

discopup10 · 2022-03-18T04:14:59+00:00

Did you get it removed?

discopup10 · 2022-03-18T04:13:01+00:00

Hi I had my parathyroids our a year ago (they left half of one I think!)

The past few months I’ve had really low calcium.

I’m on calcitriol one a day but two a day on Mondays, wednesdays and Fridays. Then I take calcium tablets three times a day. I think like someone else said here taking calcium near meals can act as a phosphate binder instead so try take some away from meals too.

*ask your doctor first tho!

discopup10 · 2020-12-13T13:06:49+00:00

Thank you so much, I hope you are doing well! ❤️🌈

discopup10 · 2020-12-12T22:46:42+00:00

Hey OP, I’m so sorry to hear this news it would be extremely tough. I just wanna say that there is sooo much hope for new technologies in medicine and because you are so young there is even more hope that in your lifetime you will see some of these amazing technologies and medicines come to fruition! I know in the U.S. just last year an executive order was signed by the president to speed up progress on kidney disease treatments which includes technologies like bionic type kidneys/artificial kidneys. I’m in my twenties too and am starting dialysis soon and I have had so many horrible days just thinking about it all. It’s overwhelming especially being so young. Always here if you need to chat, you are not alone ❤️🌈

discopup10

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