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Rectum stump removal

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(@john68)
Joined: 7 years ago
Posts: 2031
Topic starter  

Hi Folks, The rectum stump an unnecessary left over piece of equipment which we should have removed. It’s a topic that comes around in the forum often, 

i still have mine even though it’s been 29 years since I’ve had my stoma. So why have I never had it removed? Well after surgery I was recovering well and life was getting back to normal, yes I had follow ups and told of the hazards of keeping it but I had better health and enjoying being hospital free.

Well about 6 months ago I started having trouble having a pee !! Well I am 55 nothing unusual. So I went to the doc and she done the usual test. Trouble was she couldn’t get near my prostate. Long story short I was sent for a scan then after that small surgery where a biopsy was taken. It was sent for tests. While all this was going on every thing in the wee wee department stopped 😬 I when to ED and had a catheter fitted. Yay was getting relief but was short lived 😪 I had to have a nephostomy 🤭 A WHAT!! Well that’s what I said. It’s where a tube is fitted through the back into each kidney and then flows into a bag for each. So for the past few months I have 3 bags😁.

 Now back to the test, we’ll i sorta knew Was coming I have a cancerous tumour 🤢 So I will be receiving chemotherapy and radium to shrink and if that works an op to remove.

So at the moment do I feel unwell sorta, I have had to move a few things round with work and have good support as I do from my wife. I am in good form and staying positive yes I asked if treatment didn’t work what time do I have answer 2 years. Well it’s sure gonna save on Christmas and birthday presents 🎁 

I am going do my level best to face this like a big boy and I know treatment will weaken and make me sick but I am looking forward to getting it started.

So should you have the stump removed well if the stoma is permanent YES. 

Cheers for listening folks 🙏👍🤗

ileostomy 31st August 1994 for Crohns


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 536
 

John, you are a positive support here at VO, and I wish the same back to you! Your good humor and suggestions have my life as an ostomate better. May your treatments go well and may your recovery be speedy and complete. LL

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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Jattzl
(@jattzl)
Joined: 7 years ago
Posts: 118
 

Wow. That's a lot. Here you are thinking things are going along swimmingly and bam. I understand your original decision to leave it as I made the same decision in 2011.  They made it sound like there was no reason for going back in. Did your doctors give any pros and cons on this at the time of your original surgery?

I send you prayers and good thoughts for getting it over with to move forward a speedy recovery. 

54 years Type 1 Diabetes, insulin pump, CGM, neurological complications, retinopathy, and autoimmune CIDP. Nerve damage led to ileostomy in 1/2015.


   
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Tony H
(@tony-h)
Joined: 7 years ago
Posts: 269
 

ah feckit John that's awful , sending prayers and best wishes from down south , really brave of you to share this news , 

being honest I'm waiting on the stump removal op at the moment and was thinking of not going ahead with it as like you were I'm  not having any problem with it at the moment ,

now im going to go ahead with it as soon as I can , 

good luck with the radium and chemo and keep your positive attitude , I honestly believe fighting back against cancer is half the battle , keep strong ,

Tony 


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4206
 

Thank you for being open and sharing, John.

The news is obviously awful, but I'm with Tony in saying that your positive attitude is a mighty force in this battle.

We'll be here for support, as always.

You've got this!

 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Robert
(@njewell1)
Joined: 7 years ago
Posts: 700
 

Wow sorry to hear this John . I only know you from here on the forum where we met few years ago . You have always had a big heart and been willing to help everybody with advice and direction including me . And I for one appreciate it . I know your good lady will be there with ye getting ye through all this . But I am sending you positive thoughts and prayers anyway .

Keep er lit 🔥 my friend 

Proctectomy , Ileostomy , Ulcerative Colitis


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1467
 

Awwwe shucks John!!   I'm so sorry to hear this news but I know you fought back from all this Ostomy stuff so you know how to do it again!!!!

  Please know I will be praying for you &  your family along the way.  please Keep us in the loop!!  Stay as strong as you need to be & crumble if the cookie warrants it, no shame in crumbling... ever! Have a hug from me!

Linda


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 536
 

John, I hope that things are going as well as possible for you. For what it’s worth, I have had chemotherapy and radiation, and in my experience yes, the radiation did make me feel tired, though not at first. When the series of treatments was over I regained energy very quickly. For the chemotherapy, the nurses administering it told me that they did not want me to feel sick, and gave me some pills, medicine that can be given for nausea.  I actually never needed it. Sending all my best to you. LL

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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(@john68)
Joined: 7 years ago
Posts: 2031
Topic starter  

Hi LL, You must have read my mind, I know many here have been down this road and was going to ask for advice and an idea of sorta what to expect. I have to meet with a case worker who was discuss my treatment but still waiting on a date. So many thanks for your insight and indeed many thanks 🙏 to everyone for the good wishes.

ileostomy 31st August 1994 for Crohns


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1467
 

@john68    John,  I'm glad your open to this topic, but it has to be hard!!   I was thinking of this last night & I'm just going to say this...  I know that Cancer is taken & treated so much more seriously every year.  Meds are better all the time. Colleges across the world exchange proven treatments & for medications that fight these diseases & many others.

My hubby was so stubborn about taking pain meds & it about made me crazy!  He had Pancreatic Cancer.  If I could beat the topic with anyone I would suggest they take the meds. & don't suffer in silence.  Also, He lost so much weight bcuz eating from nausea turned him off of foods. Take the nausea meds too if you need them.  Eating several small meals a day was easier on him then a few bigger ones.  Watching him suffer this way was difficult for all of us.  Don't try & be too, lol,  " man" strong with pain,  you know it has a way of getting on top of a person & about crushing them so take the meds. when you need them.  Theres no reason to suffer un-necessarily. 

Also, maybe Google the super foods & start eating them in advance & try to keep it up.  They don't have to be expensive. Veggies like Butternut Squash, Blueberries,  an antioxidant frozen or fresh, these make a great snack frozen in/on yogurt, good for your intestine, it becomes a bit like icecream,  add a drizzle of maple syrup... theres a bunch of really excellent foods that can help give you strength, energy,  build iron & vitamins that can be healing for you as you walk this path.  If your not up to googling & would like help with super food suggestions, just say so & I'll delve into it for you.  I'm sure here, there can be a lot of ideas & or suggestions as to how to cook foods you may not be familiar with but would like to try just for the power they have in them.

All the best & please know that we ALL care about you & appreciate you here. 

Linda


   
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Tigerlily
(@tigerlily)
Joined: 3 years ago
Posts: 342
 

John, sorry - I’m getting caught up on posts, so just seeing this now. Your news is scary, and no doubt came as a big shock to you. I echo what everyone has already said. I’m sorry that you’re having to deal with this, but as already mentioned, cancer treatment has come a long way in the past several years. Do you know if the radiation is meant to eradicate the tumour entirely or shrink the tumour before surgical excision?  My radiation didn’t hurt at all, but it can interfere with healing after surgery (because radiation doesn’t differentiate between cancer and healthy cells; it just attacks everything in it’s sights). Something to speak with your doctor about how best to mitigate that. For me, hyperbaric oxygen therapy, even 2 years after the surgery was the answer. Most people won’t have any issues with this, but it never hurts to speak with your doctor. I always believe that having ALL the information is the best way to make informed decisions, and I know that you are up to fighting this with every fibre of your being! As already said John, you are a kind person who doesn’t deserve this curveball, but it is just going to be a minor bump in the long road of your life. Allow yourself to wallow in the unfairness of this for awhile, and then regroup. You have a big group of supporters here, and we’re ready to listen anytime, so if you feel like ranting, just do it. All the best, John.

 

Laurie

Just a semicolon


   
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(@john68)
Joined: 7 years ago
Posts: 2031
Topic starter  

Hi Folks, I have finally received my appointment with the medical staff who will take me through my treatment. I was wondering why I hadn’t been contacted and after a phone call discovered that an appointment letter had went to an old address. Any way my new appointment is 15th April at the City Hospital Belfast, we have 3 treatment centres and I am very content with this one. The game plan is to shrink the little bugger and then go in grap it by the scruff of the neck and see how it likes that. Have been given a whole heap of information which I have been going through. I would like to thank everyone for the good wishes and support it means a lot. As for the chemo part I will probably know more on the 15th. 🙏👍🤗

ileostomy 31st August 1994 for Crohns


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4206
 

Thank you for updating us, John.

We're a community, and we've got a lot of cancer veterans who've got your back. Time to show that little punk who's boss!

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 536
 

During my radiation treatments I had to lie on a table for about 15 minutes each time while the technicians stayed in another room (with an intercom; if I needed anything they would hear me say so, but I never did). To pass the time they played music - they would ask what I preferred, and I always chose classical. Once they made a mistake and played country western. When they came back into the room 15 minutes later they heard it and apologized; I said it was fine, that I like country, too.

I wonder if anybody ever asks for heavy metal. Or polka.

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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Tony H
(@tony-h)
Joined: 7 years ago
Posts: 269
 

Hey John best of luck on the 15th , the hospitals in your neck of the woods are world class so you are in good hands , I was going to suggest some good music to cheer you up and wee Daniel came to mind ,always makes me smile esp when he's muted, 

Ah jokes aside keep fighting 

Ps just incase you love Daniel, 

Love him or hate him he always makes me smile 


   
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(@john68)
Joined: 7 years ago
Posts: 2031
Topic starter  

Hi Tony, Mary thanks 🙏 for the good wishes. I too admire DoD but really hope I don’t get him on the head phones while getting treatment. 

For our Cousins across the pond Daniel is Donegals is biggest export always has a “kettle on the boil” 🤠 

Pity their ain’t a turf emoji 😂

ileostomy 31st August 1994 for Crohns


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 536
 

Awwww, he’s sweet, and all those people in the audience singing along …. John, if you have him on your headphones you maybe you will be singing along, too, quite a treat for the medical folks to hear!

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 506
 

I am so sorry learn of this John. You have a good positive attitude. Your going to kick this crap God willing!! 

Before I got my total proctocolectomy I did my research and reading on forums. Saw so many issues with this rectal stump subject that I insisted they take my rectum and stump. So thanks to those people posting I now have a barbie butt. I'm sure this post of yours will help others in the future.

Keep us posted when your feeling well and I'm praying for you for a smooth outcome and speedy recovery.


   
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Tony H
(@tony-h)
Joined: 7 years ago
Posts: 269
 

@john68 


   
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Tigerlily
(@tigerlily)
Joined: 3 years ago
Posts: 342
 

@tony-h I nearly bust a gut laughing at the turf fire! You guys are killing me!😂 LL is right - you can ask for music during your radiation (no doubt they will have Daniel O’D), even heavy metal or polka. I also asked for classical music, but sometimes I wanted quiet so I could do my own guided imagery. I liked to envision the radiation machinery harnessing the power of all the stars in the universe, and focusing it on my tumour. For that, I wanted to hear (in my head) Bruce Cockburn’s Lord of the Starfield. I don’t know if there’s any conclusive evidence that positive imagery is helpful, but I decided to do it anyway, because you never know - the human mind is an amazing thing. My tumour no doubt would have shrunk anyway; it did, and was successfully removed. We are so lucky to be living in a time when medical advances can kick cancer to the curb! Good luck on the 15th John. We will all be with you in spirit.

 

Laurie

Just a semicolon


   
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