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ileostomy stoma 4 has opening way over toward one side ROSEMARY

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Posted 11/19/2012 12:00 AM (GMT 0)
OK so i am back at the hotel after thursday's local stoma revision.

It had stenosed as you know only right at the very tip. Fascia and skin level areas were fine. I wrap wood very loudly as i say this, but so far so good. Hey 3 days so far!

Anyway, the swelling is still there of course. But the opening is very much to one side of the new stoma. It is definitely not in the middle. I asked the doc about this and she said that a stoma can still work fine even if the opening isn't right in the middle.

Are any openings in your stoma very off center?

As long as it keeps working at this point i would not care if i was shi--ing out my arm pit, but just wondered if anyone has ano off center stoma.
Posted 11/19/2012 1:40 AM (GMT 0)
Rosemary,
You have certainly gone the rounds with all of this so much...I really hope all this works out wonderfully for you :) love and hopes...
Posted 11/19/2012 1:59 AM (GMT 0)
My first one pointed toward my belly button a good bit but it never caused any trouble. I hope so much that this one does the trick and you can be done with this whole mess!
Posted 11/19/2012 2:24 AM (GMT 0)
pancakes, my opening of my stoma points toward my belly button. you said your FIRST one did that. How long did it last and what happened that you needed a second stoma? or were you a take down person. sorry i have not kept up. Rosemary
Posted 11/19/2012 11:38 PM (GMT 0)
Hi
the opening in mine is way over to the right as well. Ive only had an ileo since August, but so far it hasn't seemed to cause any problems - knocking on wood too
Posted 11/20/2012 12:44 AM (GMT 0)
I got a new (2nd) stoma with step 2 of j-pouch. The first stoma was actually the best of the two because it was an end where the second one was a loop. I had the belly button pointing one from March til October and it always worked like a champ.
Posted 11/20/2012 2:35 AM (GMT 0)
Ok that is good fEedback. I ate quite a bit today compared to what i have been eating. Follow up appt tomorrow. Am going to ask if some anti inflammatory or even steroid may calm my immune response to lessen any new scar tissue. There has got to be some hyper healing issue going on here unless this doc is off the mark whcich i don't think she is. We shall see. R
Posted 11/20/2012 4:13 AM (GMT 0)
Rosemary my stoma opening went to the side as well but hurt my skin stoma nurse put me in convexity and now it's centre and more round , I'm back in hospital since yesterday still having same troubles but sounds like you finally found a answer so happy for you to finally have a functioning stoma and be able to eat more yay
Now going to check and find out how you made it happen also catch up on Sarah's posts congrats
Lucky lass
Posted 11/20/2012 8:52 AM (GMT 0)
This all sounds like GREAT news Rosemary! still can't believe what you've gone through.. just crazy and such bad luck. Have absolutely everything crossed for you that this new (wonky) stoma will work brilliantly and see you through.

Building confidence is tricky.. I feel like a recovering anorexic and it's very hard to eat solids with confidence. I'm just scared of the outcome. I'm scared this stoma wont' work. I'm scared it'll go wrong again. All the same things you must be going through too. But slowly day by day, I get a tiny bit more confident, eat a little more and try things in tiny amounts and low and behold.. it works! On Sunday I actually ate (a tiny portion) roast chicken, potatoes and (*shock*) vegetables. And it worked through just fine. I still get full very easily and tend to choose slop and soup almost by default.. so it's hard, but I'm starting to get there.

Funny story from yesterday I was in a clothes shop trying on a jacket and the sales assistant said.. 'oh you have a fantastic figure.. I wish I looked like that!' ( I was thinking how healthy and glowing she looked - compared to me, pale, underweight and zero muscle)..... nice of her to say so, but if only she knew the half of it!!!! Firstly I'm too thin now and underweight and need to gain some weight.. but if that's what floats her boat. Seriously wrong though!

Anyway... LL - really sorry to see you're still having problems?!?! what's going on?

Rosemary.. look forward to hearing more and more positive posts and progress on your eating. Good to hear you have faith in this new surgeon too. Hugs S x
Posted 11/20/2012 2:15 PM (GMT 0)
rosemary sounds like things are moving in the right direction for you finally. absolutely wonderful.
sara.. and you too. keep eating woman! little bits lots. mini meals on mini plates.
I remember when I was dramatically underweight, no muscle etc.. after one of my gazillion surgeries. And people would say things like that clothing store lady. It used to grate on me so much. Don't know why, but it used to just tick me off. I remember one time, I had to drink prescription elemental nutrition supplements. absolutely disgusting taste. I shoved one at this person and said, here taste this... and don't comment on people's weight ever again. people just don't get what we go through.
Posted 11/20/2012 8:31 PM (GMT 0)
Hi Sarah
I'm still having a lot of problems with my whole digestive system and retaining minerals such as salt , iron and especially magnesium my stoma is working but really slow like I ate lunch yesterday and twelve had some soup, bit potatoe and actually ate some very thin roast lamb but had no out put for 7 hrs it's finally emptying out this morning but very thick and hard to get out of bag !
Drs are talking of putting a peg or picc line in to give me the salts etc I need and that would finally allow me to go home for good (3 and half months of hospital ) just about except a couple weeks home is driving me crazy .
Surgeon is coming to review me today but the physician taking care of me thinks my problems are caused by gastroparesis not stoma ?

Sarah you will gain weight I have put on 2 half kgs now 43.6 just eat what you can and don't over do it my muscle is starting to rebuild ( didn't have much to begin with ) but getting clothes is a nightmare think I will have to go to girls section in shops as ladies wear just doesn't come small enough my skin is still hanging though I'm 54 but it looks revolting :(
Best wishes to you Sarah and keep getting better L Lass
Posted 11/21/2012 2:57 AM (GMT 0)
thx all, but things not as good today as they had been. i did a post on my update. think and egg is still in me scrambled that is chocolate must have bypassed it. did get out a bag of gas in my sleep so that is all good. so somethings good and some maybe not but at least better than with stenosed tip of stoma. god that awful. i am going to stick to gushy soup and yogurts and lots of liquid tomorrow. sarah i am the same especially with my stoma opening off to the left. scared to change bag tomorrow but have to.

i have gotten the oh i wish i had your figure compliment too and i just think you would not want it the way i got it. thin is highly over rated. i see normal to chubby sizes with normal plates of food and i think there is where it is at.

LL sorry you are back in hospital. electrolyte imbalance can cause slow guts so if your stoma is ok but guts are slow maybe they can work your electrolytes. hope so.

my picc arm is totally weak. they cannot do another and my other arm is off limits due to a prior nerve injury. sooooo not know what i would do if needed anything more done. they are not wild about anti inflammatories here but i am taking some days then tylenol at night as nsaids wake me up.

i am praying as my stoma swelling goes down that the hole will move central not more to the left of the thing. if it ever moves right next to the skin this will be bad. i won't be able to bag it. the doc says if another stenosis she will run a test to see how the blood flow to my intestines is. yikes! but at least she has a plan.
Posted 11/21/2012 3:41 AM (GMT 0)
Since I've been sick I've learned to look at people differently (overweight, underweight, moving slowly, etc.). People have so many stories.
Posted 11/21/2012 4:20 AM (GMT 0)
i know i see everyone differently too.  i make eye contact and say hello to those with deformities, canes, wheelchairs, retarded, you name it they get a greeting from me.  R
Posted 11/21/2012 10:25 AM (GMT 0)
Rosemary a convexity pouch corrected my stoma and it was very close to my skin output burned my skin raw so maybe try one ,
Saw surgeon tonight and he said I have dilated bowel loops ( oh no ) having ct scan tomorrow and he's getting my records from previous surgeon and gastro I've been bloated all day and havent eaten since lunch with no output since this morning it is such a relief that someone is finally listening to me .
Lucky lass
Posted 11/21/2012 10:39 AM (GMT 0)
Rosemary.. take it easy with the eating.. I find eggs tough even now, especially scrambled. Super slow and build up from liquids to mush to more solid. don't try to test it too soon. you've had too much surgery and been through too much.. so just super slow.

LL.. doesn't sound like gastroparesis to me. more like adhesions causing the bowel loops. So sorry :-( hang in there. glad you're having a CT. hope they can figure it out and get you sorted.. even if that means more surgery. uggh! hugs x
Posted 11/22/2012 11:28 AM (GMT 0)
Thanks Sarah
I'm getting a peg put in tomorrow and will see surgeon with results of my ct ,
contrast hasn't come in to my pouch yet and it's been 12 hrs time I had one with old stoma 4 months ago itpouredit in a hour also have lot of pain and gas , it's getting very tiring and trying to keep my fears at bay but must confess I'm getting rather scared about this now wondering if this problem will be fixed I'm with you Sarah this sure feels like bowel loops not gastroparesis .
I hope you are doing ok big virtual hug from oz xxxx LL
Posted 11/23/2012 5:03 AM (GMT 0)
lucky important question, wed they put me on a grape juice sip diet as i had issues with real food not going through me.  seems like even the grape juice got stuck until i walked miles. then it all poured out of me.  my yogurt coffee and orange juice routine does not produce a bag of output like it did before stoma 3 tip stenosed, so there is definitely an issue with this 6 day of stoma.

How did they see the dilated bowel loops?  did they do just do a plain standing and lyiing down xray?

i may ask for one of those.  seems like even with a ton of grape juice in me, now their idea, i have to walk a long way to get that out of me.  i am sooo hungry and weak.

also what is a peg tube?

in australia where i think i remember you said you were from, do they use Sprayshield to slow or prevent adhesion regrowth between the loops of small bowel?

glad you are being listened to.

sarah, i have some issue where now even grape juice is getting stuck it feels like it is deeper within than at the new stoma level.  i sure hope i am not getting more deeper in adehsions from yet this more surgery tho totally needed.  I don't think from this one as they did not have to enter the abdominal cavity, but the sept one they did and then took out my unused colon which i did not consent to for fear of yet more adhesions as i am an adhesion fomer.  but you are right.  they rushed my diet at the hospital so that they could say she is eating full bland meals so out she goes.  i actually was glad to get out of there as there is no sleep in hospitals.  I sure have to avoid any more hospitals UNLESS crisis with stoma 4 as i need healing time, but only time will tell.

i am going to ask my doc for a plain xray of me standing and one lying down and see if i have dilated bowel loops.  there is no reason i should have to now live on grape juice per the surgeons instructions.  the whole idea was to eat.  today i just got so hungry i had yogurt and some protein clear drinks.  i just could not stand it.  i don't even know if all that made it out as the grape juice looked like pure grape juice to me.  Glad you are still doing well.  I would love to have you stoma and lack of adhesions and I would keep that working stoma forever and ever.

Rosemary

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