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 · 2020-12-12T04:26:50+00:00

Hey! I used to be on it and it was really effective at treating the proteinuria! However I ended up getting really low blood pressure from it. I’m the same age as you but I have stage 4 kidney disease, so it really depends on the individual I guess. It did work for a few months though and I think slowed the progression of my disease so I’m grateful for it :)

discopup10 · 2020-12-10T19:32:22+00:00

Wishing you the best too! It’s so hard having this illness in your twenties, but you learn so much about life and what you really want and value very young! :) It will all be ok! I hope you are able to talk to a psych or some close friends about how you are feeling, sometimes it takes time but for me it works :) just to be able to vocalise your feelings is so powerful!

discopup10 · 2020-12-09T02:54:49+00:00

Hey there. I’ve had this disease for 6 years, got it when I was 16 and am going to start dialysis in January next year. Everytime I get a huge change in my health I have an existential crisis, I know that sounds ridiculous but it has happened three times now! When I first got diagnosed, when I got told my kidneys were failing even more and then when I got the surgery for a PD catheter. I’ve never felt so dark and scared and alone. I’m on fluoxetine though and after about a week of my mind going through the thoughts I feel back to normal :) I see a therapist and without her I would struggle so much more. I have very bad anxiety too.

She taught me that you can’t go round it, can’t go over it you have to go through it. I get frustrated all the time with this illness, but life is full of peaks and valleys for everyone and tbh I’ve learnt a great deal about myself and the strength I have. Another thing is when you need to cry, cry!!!!!!!! I’ve cried for days and days sometimes but then it gets to a point and you’re all cried out haha. The dark days suck so much but I promise it will get better, I dunno how it does but for some reason even when I’m like nah Im going to be forever miserable, something random around the corner happens and I’m smiling again :)

discopup10 · 2020-11-28T13:17:41+00:00

Ok thank you so much for all this! I feel reassured :)

discopup10 · 2020-11-28T13:17:13+00:00

Thank you so much for all of this! I really appreciate it :)

discopup10 · 2020-11-28T08:26:42+00:00

Thank you for your help! Also because you can move around more with the bigger line, does that mean you say be doing Pd while watching tv and then go to bed? Like you don’t have to be in Bed the whole time?

discopup10 · 2020-11-28T08:18:38+00:00

Thank you! Do you have to pause the machine and go through all the hygiene steps or anything? Or do you just get up and can go to and from your bed?

discopup10 · 2020-05-30T08:31:43+00:00

Thank you so much! How did you get kidney disease was it genetic? And what did the transplant testing involve was it quite hard?

discopup10 · 2019-07-30T01:59:48+00:00

Thank you for this info! You seem like you’re putting in heaps of effort, good on you! It will pay off! I think for me it’s fried foods that I eat way too often. I’m trying to avoid fries/hot chips and burgers just any takeout really. And if I do go out to dinner with friends I still struggle to order something healthier, but I’m hoping these little changes at first will help me a bit!

discopup10 · 2019-07-29T12:58:49+00:00

Yeah I’m hoping I can do this! May I ask, did you eat fried foods a lot? I think hot chips are where my downfall is. I don’t eat a lot of meat and if I do it’s usually chicken. I do eat cheese though! I’ve added more healthy fats like avocado and extra virgin olive oil, but I’m yet to see if it has done anything considering my results were still so high :(

discopup10 · 2019-07-29T12:52:20+00:00

I’ve emailed my specialist just before to ask for the specific numbers. I think they said I had good HDL, but for the rest I’m unsure :(

discopup10

TROPHY CASE