Swollen Stomach and Possible Shingles - Need Advice!

Hi all! I am 10 weeks post-surgery. I had my left kidney, bladder, and prostate removed. I have a stoma and am still experimenting with what works best for me. Recently, my whole stomach area became swollen (hard and hot); then a day later, I noticed a lump - like a pimple - really close to my stapled scar. I admit a few days ago I pushed hard on a stubborn gate and knew as soon as I did it I shouldn't have. This morning, my wife called the doctor and his nurse said it sounds like shingles to her. She said, "Sometimes you have that before you get a rash?" I only have the 1 bump!!! So, of course, that is my concern right now and I'm scheduled for a doctor's visit soon. I also have a lot of other questions and whatnot. I read on here that you can contact different companies for free samples, so we are working on that right now. I appreciate any info or comments you'd like to leave, and I will post more questions soon, I'm sure. It was a blessing to find this site, and I am thankful for and praying for you all. Duncan

Hello Duncan. Thanks for your post which introduces us to the new concept of shingles, that I haven't come across before in connection with stomas. It will be interesting to hear what the doctors have to say about it when they've had a chance to consider the symptoms properly.  You are doing the right thing by contacting the manufacturers and distributers of ostomy gear. They tend to be very helpful when it comes to advice and samples. I hope you get plenty of replied to your post as this is also useful when you first start on a site like this.

Best wishes

Bill

Thank you, Bill! I will post what doctors say and until then, continue with my boat-load of questions :). Duncan

Hi Bill, saw the Dr. Monday. He does not believe it is shingles (just wants us to watch and see if red areas get bigger around). The little pimple-like bump may be a boil? He also checked for a hernia but said 'nope'...lol. So, for now, next appointment is 8/15 and we will be getting 'the cancer is gone' diagnosis! :D Be in touch soon! Take care! Duncan

Hello Duncan. That all sounds like good news. Lets hope it keeps going in a positive diection.

Best wishes

Bill

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Thanks Bill, 8-15 I get my stats! :) Cancer free is what we believe! I still struggle a bit and hurt a lot but accepting it. Duncan

Thanks Bill, 8-15 I get my stats! :) Cancer free is what we believe! I still struggle a bit and hurt a lot but accepting it. Duncan

Hello Duncan. What we believe is sometimes just as important as what people tell us. Accepting the hurt and struggle is a good indication that you will cope with whatever is thrown at you.

Best wishes

Bill

Thanks Bill! I do look forward to one day helping a 'newbie' out. :) You (and a few others) have been a lifeline for me during this time. I'm sure it will still be a while before I don't need help. I'm very thankful and sure appreciate you. Take care, Duncan

Hello Duncan. Thanks for your post. I would like to point out that you don't need to look forward to one day helping a newbie out. The very fact that you have entered into a conversation about your life with a stoma will be enough to help some of the others who read these posts but have not yet plucked up the courage to join in. I find it interesting to see how many people read the forum and blog posts without contributing to the conversations themselves. It is my belief that they must be getting something positive from reading what you have to say, otherwise they would not keep coming back to read some more. In this regard, your contribution is very important becasue it stimulates a discussion that others can observe and comment upon if they want to.

A bit like other activities - there are active participants and there are spectators. You are  an active participant but you are also playing an important role for and on behalf of all the spectators - who may, one day, also want to join in, partly because the active participants are only ordinary folk like yourself who are struggling witha condition that they may be unfamiliar with.

Best wishes

Bill

Thanks Bill! I have a question; the whole abdominal area is still sore, sometimes way more than others! 3 months post surgeries, is this still 'normal'? I want to try applying my pouch myself but when my wife does it, it still 'pees'. Will there ever be a time when I'll know the driest time to do changes? Take care, Duncan

Hello Duncan. I do not have a urostomy so I do not feel qualified to answer your question with confidence. However, your question is a very good one and I hope that  other people will take the time to reply.

Meanwhile, if you go to the left hand side of this screen in the 'content' box and click on 'collections', then on 'urostomy' you will find similar questions that have been asked previously and many useful answers. When you find one that particularly suits your own situation you can always post a reply on that thread and see what happens.

From what I have read on there, what you describe is not unusual but I could not find anything relating to whether or not there will be a time when it becomes drier and easier to change without problems. I think you will learn a lot by trawling through those old posts so good luck.

Best wishes

Bill

Hi there, I have been urostomy for 9 years now. I had a tumor removed, but the cancer was invasive, so the bladder, lymphs, and prostate had to go. I healed well with no problems. In the UK, they will not sign you off as cancer-free for 5 years, as that is how long the duty of care lasts with the British NHS. I have twice-yearly check-ups and scans until they are satisfied that you are cancer-free (I've been free for 4 years). However, I also developed a post-op incisional hernia 2 years after the main operation. My own surgeon insisted on doing the repair, and that was another 32 staples up my belly, but I also had a speedy recovery and haven't looked back.

I use a one-piece pouch/bag and do the whole change standing up in the bathroom next to the wash basin. I change the bag every 24 hours (could push it to 48 hours, but I don't feel comfortable about it). I also use a large night bag for sleeping. I pop my new bag under my armpit to warm up while peeling my old one off. I don't use any sprays, powders, or potions (old off, new on). It takes me about 30 seconds to change the pouch. I don't let my wife anywhere near it. It's my stoma, my bag, my job. If I do it, I know it's done properly.

I carry on much as usual, just don't take any risks or go looking for trouble. I've only had about six leaks in 9 years, mainly due to twisting and turning in sleep. I had the operation at 62 and now I'm 71. It's amazing how soon you get used to it.

Best wishes... Pete...

Bill and Pete. Thank you both. I'll look through the older posts for sure. It does do me good to hear your stories and advice. We have started soaking up as much info as possible because we were beginning to feel very low. We know we'll get 'there' one day soon. Best wishes to you all. Duncan and Pat.

Hello Duncan & pat.

Good luck with your searching. Don't forget to let us know how you get on with exploring  and finding out stuff as it is very useful for us and others to know whether the advice and guidance has been relevant and useful.

Best wishes

Bill

Will do, Bill. This is Pat and I'm going to look to see if there are some caregiver threads. We both are so happy we found you all! Thank you!!

Hi Duncan, not sure how things work in your part of the world, but you could do with a good chat to your local Stoma Nurse, so you can go through all the stuff that is worrying you. Ref: Stoma, Appliances, medication, samples, lifestyle etc.

Also, if your State/County/City has a Stoma/Ostomy society, it may be worth your while joining as then you will be in face-to-face contact with people in a similar situation. The main difference being output (urine or poo). They may even have a dedicated Uro division.

Anyway, let's hope things get easier for you as you progress. Best wishes, Pete.

Have urostomy too. And I've had many bouts of shingles since being diagnosed with them many many years prior to urostomy. If I were you and what you describe, I would not consider shingles, but something incision related: abscess, some gut infection.. I'd be very judicious in getting it treated as I'm aware of how sudden and sickening a gut or incision infection can strike and debilitate. Best luck.

Wow, did not think of that, thank you, h5g! I see the doctor next Monday and will bring it up again. At the last visit, he said everything I mentioned was normal. Take care, Duncan