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Notsosicklygirl, my surgeon answered my questions and more....

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Posted 8/30/2016 4:48 PM (GMT 0)
Do you remember I asked him 2 specific questions due to his concern
I could have short bowel syndrome potential if pouch doesn't work and
I have to go back to ileo?

My questions were:

1) Do I in fact have less small intestine now?

- he said "no", I have all my small intestine.

2) I worded it asking "did you just take adhesions off small bowel without altering length of small intestine, and untwist my small bowel, OR, if you rid adhesions and it was so twisted up, did you have to cut them out in a way the procedure shortens the length of small intestine?"

-he said "no, could untwist and remove adhesions and not shorten my small intestine length."

ME: I asked many more questions. He left me saying he is not worried asbout my rectal dysfunction if I get pouch as rectum cut out for j pouch construction BUT
he is worried still pfd=anismus, may hinder j pouch success.

It' s a gamble, and he would hate for me to get short bowel reversing back to ileo.

i ) I got on 2 FB groups and none had my conditions,but 4 that reversed back to ileo from pouch not working, did not get short bowel.

ii)One had way less small intestine from needing 7 surgeries so no fault of his, and he has little left of sml int and his quality of life is very very poor. Felt so so bad. :( He wanted to explain what he does daily and he is severe.

iii) I've decided to try it. Anismus makes it tricky but 2 of my surgeons patients had success in j pouch with anismus, 2 did not He ethically can't tell me how they are other than saying the 2 that reverted back have short bowel, BUT I have no idea if they just need more electrolytes OR they are like the severe man that posted to me on FB group.

iv) interestingly the successful j pouchers, and there are many with success too, who posted to me on 1 FB group from USA had never heard of 2ft of intestine being used construct j pouch. They told me their surgeons used only 6-12inches of small int to create j pouch

V) I'm in Canada. My surgeon said he uses 2 ft. Why such a difference? Last question to ask him.

That's it you. I hope you are coming along.

VG
Posted 8/30/2016 5:08 PM (GMT 0)
Cool! Thanks for sharing. It sounds like you have a high likelihood of doing well with the jpouch, and that's incredible! Before my takedown, I asked my surgeon about reverting from jpouch to ileo in a worst case scenario with a UC patient, and he said "people generally do well". If you're in that same situation where you have all your small intestines, hopefully, it should be okay. The only other thing to think about is your history with adhesions. People who get them, get them. Are you going to have issues with each surgery? Adhesions can cause problems post surgery - even long times down the road. It's scary because short bowel is such a terrible complication. I'd imagine if you have short bowel, it's not the best quality of life... I may be wrong but that's how i picture it. Lot's of toilet trips, avoiding a lot of food, avoiding eating & then to have adhesion concerns on top means potential for stricture or blockages

look here:
The pouch designs used for RP/IPAA include J, S, or W (Fig. 6). Because a J-pouch is easier to create, it is the most commonly used. The J-pouch is constructed from the terminal 30 to 40 cm of small intestine. This ileum segment is folded into two 15- or 20-cm segments.
www.ncbi.nlm.nih.gov/pmc/articles/PMC3134803/

30cm is about 12 inches. It says 30-40cm.
Posted 8/31/2016 4:15 AM (GMT 0)
Hey you! :)

Well, my surgeon doesn't think it's a high likelihood to success :(
due to anismus BUT, if there is a chance I won't get short bowel
if it doesn't work, I want to try it......that risk unnerves me but...
50% of this hospital's patients with my deal had success while 50% did not
and got some form of sort bowel; but I don't know to what degree.

Not great odds but, I want to try a pouch.

I have to wait at least a year now that I am no longer critical which is fine.

Thankyou so much for posting what you did re: j pouch construction!!!

i) I wonder if I misunderstood him And he said cm not inches? Therefore it is less?
I am going to ask him.

ii) interesting point you made bringing up my deal with prior adhesions! I had not brought that into consideration. It is a grave consideration. Lot's to think on. At least I have time. So I will book for pouch, but can always change my mind.

iv) interesting your surgeon said reversing back people generally do well.

**With this other person's short bowel, they couldn't absorb anything. Had only 45 min of absorption with food. Nails, hair fell out. Slept all the time, fatique. And your list. very.....devastating. :(

You're the best! I appreciate your valuable input!

VG
Posted 8/31/2016 2:34 PM (GMT 0)
Vancouver girl,

I know giving the j pouch a shot means a lot to you. I wish you nothing but the best for a successful outcome when the time comes!!
Posted 8/31/2016 3:07 PM (GMT 0)
I think I would get opinions from other surgeons. I also think I would ask for some statistics. What is the chance your pouch will fail (or wont work well enough to keep)? What is the chance of short bowel if your pouch fails? If it's 50%/100%, that's too risky in my opinion. I don't think there is any outcome where someone has short bowel and says they would do it again. Much better living happily with an ileo in my opinion. I understand wanting to try... How about asking for the info of those patients (the good and bad result)? My doctor's office used me as a patient referral.
Posted 9/2/2016 12:31 AM (GMT 0)
I note you checked out some FB groups, but have you so checked out www.j-pouch.org? Lots of people there with all sorts of experiences.
Posted 9/2/2016 3:53 AM (GMT 0)

ByeByeUC said...
Vancouver girl,

I know giving the j pouch a shot means a lot to you. I wish you nothing but the best for a successful outcome when the time comes!!


Hi Bye Bye!

Thankyou so much! I really appreciate your kind words! :)
Posted 9/2/2016 4:23 AM (GMT 0)

notsosicklygirl said...
I think I would get opinions from other surgeons. I also think I would ask for some statistics. What is the chance your pouch will fail (or wont work well enough to keep)? What is the chance of short bowel if your pouch fails? If it's 50%/100%, that's too risky in my opinion. I don't think there is any outcome where someone has short bowel and says they would do it again. Much better living happily with an ileo in my opinion. I understand wanting to try... How about asking for the info of those patients (the good and bad result)? My doctor's office used me as a patient referral.

Hi again! :)

Okay, here's my confusion and more specifics.

1) He is 1 of a small group of gastro surgeon specialists. 1of 4 of our top surgeons in only one hospital in the city and they are part of the small group of the best in the country.

2) The only stats he could give me were from only 4 patients with my specific conditions that got pouches in my hospital with the gastro specialist surgeons. 2 were successful. 2 were not. The 2 that weren't, reversed back to ileo but did not do well he said.

i)Last email I asked if he could be more specific about the condition of the 2 with my condition that failed in pouch and did poorly going back to ileo. I don't know if that is ethical, he did not address my question regarding that but addressed the rest. I've just asked a second time. I hope I am not pushing my luck. He is extremely respectful with me, and extremely busy as he does extreme cases and cancer patients and you name it.

ii) Part of my confusion stems from him telling me I have short bowel potential if my pouch fails and I revert back to ileo.

- BUT,every patient on the conversation FB groups I posted on, did not get short bowel reversing back to ileo after pouch failure.

iii) When I say I have a 50% chance, I am only using the stats he could give me from his hospital I attend. Out of 4 with my conditions, 2 worked in pouch, 2 did not and do poorly back in ileo with a version of short bowel.

A)To what extent are they doing poorly B) And what are their variables as to why are they doing poorly?

I have asked again as said above.

-to reiterate, why are those 2 doing poorly when others reversing back post to me they are fine after pouch failure reversing back to ileo, and tell me one needs much less small intestine to get short bowel?

iv) there's 2 conflicting experience groups I am trying to weed through, but can only do so with more detail why the 2 are doing poorly. :(

v) So, I agree with everything you touched on. And I did ask for more specific stats. I don't know if I will get them. I am crossing my fingers.

xo
Posted 9/2/2016 4:27 AM (GMT 0)

suzy-q said...
I note you checked out some FB groups, but have you so checked out www.j-pouch.org? Lots of people there with all sorts of experiences.

Hi and thankyou for coming by!

I posted there but no one responded to my post.
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