My ureatic stent is making me a recluse! Can anybody help???!!

Posted , 5 users are following.

Hi there folks, I’m pouring out my heart to you guys tonight,just incase anyone has any ideas or answers.i’ll give you the short version. I’m a 42 year old woman who has had 12 hard tiring freight full years on haemodialysis. Then 5 years ago, god answered my prayers and I recieved a kidney transplant . I thought I’d won the lottery.it was such a tough recovery. They make out that your in and out within a week or two. But that’s not the case with a lot of patients. They,meaning the drs don’t actually tell you a lot of things until you’ve actually had the transplant. I was in for a whole month. Not easy when your a single parent too.To cut a long and I mean a long story short. During my transplant operation at a well known hospital. I was fitted with a j stent. Which I wasn’t made aware of until 3 months later when attending outpatient clinic.i was having all this pain discomfort &felt funny. So, I just put that down to having the transplant.until I found out like I said about the stent.Anyway, I have had must be around 6 stent changes now in the last 5 years.Each time becoming more and more unwell. Aswell as dealing with huge infections like klebsella and E-coli due to the stent and my body rejecting it massively.i now can’t do anything for myself. As I can’t walk! I just about can make it to the bathroom .and like any of you out there with a stent you’ll know that’s a serious problem. As your constantly going to the bathroom and with no time to spare.i cannot do any activities or any daily household chores due to this severe pain in my lower back and spine.i have spoken about this each time at my clinic appointment till I feel like a broken record and I’m not getting anywhere. I’ve come to the conclusion that they are fully aware the pain that I am being tortured by is caused by the stent but they won’t admit it.i went to see a medium, and straight away was told that something was wrong with my water works. That the plumbing of the two tubes to my transplanted kidney wasn’t right. One wAs fine but the other one had been sewn back to tightly. Causing a kind of blockage and not allowing my fluid to pass through normally. I was in complete shock!!! As this would completely make sense as I have a huge amount of fluid on. since the transplant my weight has gone up over 40kgs than what I was. Even though I cannot stop going to the bathroom.Also, until this day it has never been clarified exactly why I had a stent fitted in the first place. I just wondered if any body knew of any kind of good pain relief for my back or anything I could use as pain relief for the stent. That might help ease the pain and so I could  try to become independent again. I take paracetamol and tramadol , but it doesn’t do a thing . Except make me sleep. When I sit down the pains just about bearable. It’s as soon as I stand up and start to move .the pain in my back is excruciating! I’m so sorry to have gone on. I just needed to let it out to somebody. Before I just lose the plot. This has been going on 5 years now. Any thoughts, help or information  would be much appreciated.

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4 Replies

  • Posted

    I feel so awful for you. My stent was in for a year and I believe I know how you must feel. You simply must advocate for yourself and demand to know why the stent is still there. I know this is going to seem silly...but I used to lie on my back and hang over the side of the bed. Only for a few minutes at a time. I also used to float on my back in a pool. Have no idea if it will work for you but it seems to have relieved my crappy symptoms. I too was a recluse..one time I peed 73 × in one day. Please..please..please confront the doc..demand to know and maybe get a second opinion..Hang in there and never lose hope..If you need to vent..just need a shoulder ..let me know .

  • Posted

    That is terrible! I am so sorry to hear you had/are going through all of that! Is there a way you could go see a different dr to see what they say? Pain wise other than painkillers a heating pad has really helped me. I hope you can get things figured out so you aren’t miserable anymore!
  • Posted

    Just to clarify have you now got this stent permanently?

    I have read your messages before but really did not realize you had had a transplant and been through all this.

    All I can say is that I am continuing to pray for you.

    As I think I have already said all this does just make me realize how lucky I have been and this could easily be me.

    My only advice would be to drink more water which is what the consultant said to me when I went for followup appointment with him.

    I only had stent in for a week and had 2 episodes of very bad stomach ache during that week.

    Do take care and keep in touch.

    Sarah xxx

  • Posted

    So sorry to hear about the pain you've been in! I've only had a stent in for max one week but the pain is absolutely awful. Definitely do speak up and make demands- it's you're health be as selfish as you need to be, demand they listen. 

    As for pain, I find that an ice pack helps with the urethra pain & heating pad on the back, pain killers of course as well. A warm bath/shower helps too. Azo is something I just discovered for pain and it definitely makes a difference- go to your GP and get the prescription strength instead. hope you begin to feel better soon and get some answers! Take care

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