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New treatment proposal - balloon dilation

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Kirsten
(@kirsten)
Joined: 6 months ago
Posts: 55
Topic starter  

Hello gang,

So, I'm 5 months into this ileostomy journey and I saw my surgeon this week to discuss next steps. She has asked me to go to St Michael's hospital (three hours away) to try a series of balloon dilation procedures. The goal would be to open up the almost-totally closed surgical anastomosis (joint) from my original colectomy which closed up with scar tissue a few months after my first surgery. Her hope is that we can avoid a surgical revision of the anastomosis and create a stable, functional colon, potentially reversing the ileostomy a few months later.

Each procedure will be under anaesthesia and I won't be able to drive home - several hotel stays in downtown Toronto sounds pretty expensive! (No, I don't really have anyone to drive me home) plus this is a lot of time off work (during and after the procedures), that will eat up all my remaining vacation time...

My concern is, they tried this in July when the joint originally closed up, and they perforated my colon ! It was extremely painful to say the least. Traumatic enough that I have struggled with nightmares and such ever since. I was in hospital for a month, on TPN, missed three months of work... it was truly awful.

My surgeon knows how I feel, but she is also sure this is the safest option with the greatest chance of success. The reason she wants me to get it done at St Michael's is that she feels this is the most expert team. 

I'm scared! I don't want to go through another perforation! But I can't just refuse and ask for surgery instead, because I know that's not the right choice. I'm working on my stress and fears, relaxation techniques and all the good psychological stuff... I'm a single mom with two teenagers who have really suffered because of my illness. Their mental health is not great and mine is tenuous at times.

I wonder if anyone here has experience with balloon dilation. It might help to hear others' stories.


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 484
 

Hu,

I've never heard of this Ballon dilation. What exactly does it do? 


   
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Kirsten
(@kirsten)
Joined: 6 months ago
Posts: 55
Topic starter  

My colon is blocked with scar tissue. This procedure places a 'balloon' in that spot, inflates and (hopefully) enlarge the area enough to make it functional again.


   
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BigMike322
(@bigmike322)
Joined: 5 months ago
Posts: 74
 

Sounds like it could be promising?  I hope it works with little to no issues.  🙏🏼🤞🏻


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 484
 

@kirsten I see, thank you for explaining.  That sounds like it might help.


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4176
 

Posted by: @kirsten

I wonder if anyone here has experience with balloon dilation.

I don't know anyone who's had it, at least not that I remember, but I have heard of it and hope it goes well for you!

Posted by: @kirsten

several hotel stays in downtown Toronto sounds pretty expensive!

Yes, downtown is really expensive. I'd suggest looking just outside the city (like in Scarborough), but then you'd have to find a way to get back into the city, which could end up erasing any savings. 😲 

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


   
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Tigerlily
(@tigerlily)
Joined: 3 years ago
Posts: 330
 

@kirsten try Bond Place Hotel. It’s walking distance to St Michael’s, and it was reasonably priced whenever I stayed in Toronto for medical consults. I wouldn’t call it fancy, but it was just fine.

 

Laurie

Just a semicolon


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 484
 

I took 2 trips to Toronto area and stayed in the waterside inn which was actually a 1 bedroom apartment with kitchen and balcony overlooking the lake. It's at  15 Stavebank Rd S, Mississauga, ON L5G 2T2, Canada. Decent prices!! 

It was beautiful!!! It saved money because I was able to walk to the grocery on the strip and cook for myself. You'd have to get a taxi or ride, drive to Toronto which is not far at all. 


   
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Cat momma
(@cat-momma)
Joined: 11 months ago
Posts: 94
 

@kirsten Scar tissue is a rigid type of tissue. So even with dilatation, the scarred part of your colon will never be able to move like the rest of your colon with peristalsis. So you might want to go back to your surgeon and ask her about outcome data. How many people are chronically constipated after this procedure?

Incontinent in a better way, since 12 July 2023


   
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 LK
(@dlkfiretruck)
Joined: 6 years ago
Posts: 1449
 

Hi Kirsten ...I'm so sorry your going thru a rough time! Not fun at all. ♥️!   My kids have only known me to be struggling with health their whole lives so I do get your concern.  I was 10 when my bowel issues started & I'll be 66 soon, now my Grands are dealing with this to some degree. When my little 4 yr. Grand-D told me " I was'nt playing the "chase me" game the right way "  (as I needed extra breaks that day), it was like looking into my daughters eyes telling me it was her turn to use the bathroom & you were just in there MOMMMM!!! Lol! Ugh! The kids & what they go through!  As parents we worry but as my  kids got older I heard so often from other parents & teachers how caring, helpful & compassionate they are & then several asked how I managed to raise them this way?! 

I sure understand you hesitancy to avoid further surgery verses a surgical type procedure.   I have had an experience with something called Hydro-dilation, but it was of my Bladder.  They knocked me out for it & there was pain associated afterwards.  But once that healed up, I could at least urinate several hours apart after the procedure verses several times an hour.  Same as above the hard scar tissue needed breaking up & by using sterile fluids they blew my bladder up bigger to break that hard tissue. There was some light bleeding a day after,  but the procedure worked well for me. 

I'm going to suggest you talk to human resources at the *Hospital perhaps they can help with your Hotel fees before,  during & after the procedure. Maybe even with transportation fees. As I know anything out of my town they cover vehicle (Gas) expenses, parking...  but know your info before hand & also save ALL reciepts & tickets. If you pay first they just say you could afford it  but they don't often realize we "Rob Peter to Pay Paul" over these sort of things.

Linda


   
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Kirsten
(@kirsten)
Joined: 6 months ago
Posts: 55
Topic starter  

Thank you, everyone. I knew you'd have some good feedback and advice for me! I have friends in Toronto and area (I lived in Port Credit until 10 years ago) - I know the Waterside Inn well, Chelly! Memory lane... I will talk to the team who would do the procedures before I go get anything done. I'll definitely ask for more information about the success rate of the procedure, thanks @cat-momma. I guess, if the procedure works I won't need surgery. If it doesn't, or it goes sideways, surgery. It makes sense to try the "less invasive" procedure first - though, given the fact that it ruptured my colon last time they tried it, it doesn't feel less invasive! 

I'll keep y'all posted! 

Thanks for the accommodation suggestions, helpful feedback and support ☺️ as always 


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 484
 

@kirsten port credit and waterside was my favorite business trip. I went there to train a holistic doctor on a hair regrowrh machine when I used to work in hair loss business.  She suggested that hotel and I loved it so  much. I loved the strip as well with the shops. It was so peaceful getting up I'm the mornings  and having coffee on the balcony looking out at the lake and seagulls flying around. I was there twice. It's  very peaceful and beautiful memory tucked into my brain.i hope you get som relief from your problem and I hope ypur procedure goes well.  I live in the US and the port credit trips were my first and only visits to Canada! Good memories 

 

 


   
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Kirsten
(@kirsten)
Joined: 6 months ago
Posts: 55
Topic starter  

Well, I went to see Dr May at St Michael's. The procedure wasn't a success. He wasn't able to open the anastomosis in my colon at all, let enough to place the balloon or stent. I was glad that he didn't push it too hard and risk perforating the colon (ahem, like the last guy did). I'm disappointed that it didn't work though, because that means I'll need a full surgical revision of my previous colectomy. Sort of like I'm at square one minus two!

A year ago I was sick with many, many almost constant infections and diverticulitis and preparing for surgery to correct that. Then the rest of this journey unfolded. So, preparing for another abdominal surgery hoping it will turn out better than last ones :) 

On the bright side, I took my oldest kid (20 years) with me to Toronto with me. We got a hotel, did some shopping, ate some mighty fine food truck cuisine and had Martini's in the hotel lounge. Very relaxing 😎


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4176
 

Posted by: @kirsten

So, preparing for another abdominal surgery hoping it will turn out better than last ones :) 

On the bright side, I took my oldest kid (20 years) with me to Toronto with me. We got a hotel, did some shopping, ate some mighty fine food truck cuisine and had Martini's in the hotel lounge. Very relaxing 😎

Well, I hope this next surgery is the one that resolves all your issues!

And I'm happy to hear that you and your son were able to spend some time in the city, too! 😀 

 

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


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 484
 

@kirsten do you still have colon left? If so you might wanna think about a total proctocolectomy and end ileostomy. Nobody's first choice but it may end all your problems. Not sure exactly what all or symptoms your going through. Gosh I re read this thread  and saw you were in hospital on TPN for 4 months. I had TPN gor one month in the hospitL and them sent me home and I had to do it myself for another month. My problem was different though. 

I'm sorry the Ballon did not work out.

 


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 484
 

I just wanted to say that I started with a temporary loop ileistomy as a test to see if it worked out for me. It did all my conatipation symptoms went away and I was able to poop in the bag and no laxatives. I did haveca problem with rectal pressure from the hardened mucous plugs which was just as bad as constipation so they did a scope of my colon and when I woke up the doctor said he had to abort the procedure due to so many mucous plugs inside me. He said he's never seem anything  like this and that my colon is not working and I should think about getting it taken out. 

After that procedure I went back to colorectsl surgeon and same hospital so he could see the notes and I'm sure at some point they collaborated on it. 

I opted for a total proctocolectomy that is removal of my whole colon and rectum. Doctor warned me no going back ever after this. No reversal l ever again. I said let's go for it as it was too painful with that colon and rectum of mine. 

Do I regret it? Sometimes but I know it would of never been possible to keep it as it was not working at all. I'm no longer in pain and I can poop. 

I'm not sure of your whole problem as in what your symptoms or medical history are but in my case taking out that bad colon was my only way to live a normal life. 

 


   
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Kirsten
(@kirsten)
Joined: 6 months ago
Posts: 55
Topic starter  

@chelly - I do have most of my colon. My main issue is diverticulitis. Diverticulum still exist in the sigmoid colon, which is why we're hesitating on a surgical revision. That tissue isn't great for sewing back together, so I'll lose a bunch more bowel with this revision. The rest of the GI tract is okay, so I'm hoping the disruption will be minimal. I've had some issues with irritable bowel over the years, but no real diagnosis attached. 

I don't know what kind of scar tissue I have; if it's granuloma then that is fairly flexible tissue, but bonds together really easily. I'm going to ask if it's feasible to place a removable stent with the next surgery, to keep things open while it heals. If not, and the same thing happens again, I know to try the balloon dilation and stent sooner in the process, to preserve the surgical revision. 


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 484
 

@kirsten I see. So you and your surgeon are trying available things that may work out for you. I'm not to educated on diverticulitis except that my mother in law had it once.. I surely hope they can find a remedy that will help keep you out of further surgery.. praying for you.


   
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