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Not life threatening.. but how long can I stay like this?

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Posted 8/21/2012 4:26 PM (GMT 0)
thanks.. yes you're right ddd45, I did think that as soon as I ate the rice. Even so it was a tiny amount. SIGH. Life and learn!

anyway.. seems that I am being forced to wait for my original surgeon. No-one else will touch me unless it becomes life threatening. He's on holiday, so the earliest appointment I can get is 31st August.. and then potential surgery on 11th.

I'll definitely speak to my GP about TPN. Thanks all for your input.
Sarah
Posted 8/21/2012 6:03 PM (GMT 0)
Sarah,

My issue is very malformed stoma. I think the doc did not free up enough bowel from adhesions to bring it out far enough. Even though done lapro, they used the regular CO2 insufflation gas which totaly dries the peritonium and makes adhesions instead of Insuflow warmed humidfied gas that does not dry the peritonium. Lexion medical makes insuflow. I am asking if the doc out west can use this. Have a contact at lexion that can be of help. Lexion actually comes out and helps with this

I am also dealing with an adhesion doc in germany jens pagels who is reviweing my records and running them by a surgeon over there to see if they cam get rid of the adhesions and make me a new stoma. They take down the adhesions with very little cautery if any as that makes inflammaton and causes adhesions then they use sprayshield adhesion barrier. Sprayshield is made by covidien in massachusetts but is not used in the US. It works and I have no clue why it cannot be marketed in the us.

So I have two ideas going. I have a med flight out west lined up for sept 9 with appt with head colorectal doc for sept 11. Then stoma revision on the 14th. I mailed a lot of stuff ahead and was hoping for a tel conference with her prior to going. But she has to actually see you prior to issuing absolute opinion though she has pics of my stoma and all symptoms. This makes sense.

I really do wonder though if German docs and sprayshield have the technology and the materials that I need though?

Seems like I need this head colorectal surgeon out west AND the adhesion doc in germany to work together on me. I would not have another general surgeon do a stoma. It was malformed from the start and the more malformed it got the worse it worked.

Good luck sarah. It is awful what we are left to deal with and having to get our own help. So far I can still eat but this is going down fast and am not sure if I will run out of time. I know I can get the evac plane to the west sooner if it becomes an emergency but getting to germany in that state who knows?

Rosemary

Post Edited (esoR) : 8/21/2012 12:07:05 PM (GMT-6)

Posted 8/22/2012 10:44 PM (GMT 0)
How are you doing today, Sarah?

At least you don't have to make a decision..... maybe that can relieve a little stress..... or maybe not.
Posted 8/23/2012 2:09 AM (GMT 0)
Sarah,

How are you? Besides needing TPN you may come to a point where you need IV's for nutrition, are throwing up, and need IV pain killer. This is how my stenosis went, but as I said I was in it for 3 months. Why docs don't believe this is an emergent condition on any continent (i guess) is way beyond me. It is like if someone shut off their rectum, they would be the first to demand attention. Stick to those clear liquid protein drinks and drink slowly.

Oh, by the way, after my original gut injury/complications/scarring in 2006 that lead me to need the ileostomy, believe it or not I lived for 13 months on clear liquid protein drinks (except when I was having small bowel adhesion obstructions then I was on IV's) but never once did any doc offer TPN. Have NO CLUE how I even made it that far. I did lose 1/4 of my body weight.

With my new stoma partially collapsing and the hole open to the width of a Q-tip per last exam, I am anxiously awaiting my appt at Mayo. They could do the eval sooner to now but not the eval and the surgery back to back until Sept 11 and Sept 14. So I am in the waiting game like you are, but so far my narrowing SO FAR ANYWAY, not as bad as yours. BUT after I sneak in a bit of scrambled egg then I have to drink like fish, then swish the yogurt and the scrambled egg out with hot grape juice.

Let us know how you are. Rosemary
Posted 8/23/2012 8:05 AM (GMT 0)
Thanks ladies.. I'm doing ok. Sticking to liquids, protein meal shakes, soup etc etc. Feel a LOT better if I don't try to eat solid food. Not a huge amount of energy and a bit of weight loss (it's slowed down) but hanging in and seem to be managing it. I'm not vomiting or anything like that, and I'm feeling a bit more stable and in control. The minute I try to eat anything solid, it just gets obstructed, so the liquid thing seems to be working ok and my symptoms are more manageable until I see my consultant on 31st.

I think you're right Rosemary, you can survive on liquids for quite some time. I hope you get some answers soon too. Hang in there.

How are you Blue? any more blockages?
Posted 8/23/2012 7:56 PM (GMT 0)
Glad you're hanging in, Sarah, and thanks for asking. I'm fine. No more blockages (well, since my ER trip on Fri night). I'm pretty busy w/work -- school starts in two weeks, but I have a lot of administrative etc. things to do. I find that every time I get tired I get so scared that I'm not going to be able to handle things.... just have working full time and being sick all the time so associated in my mind.... but that's mostly a mental thing, as I'm fine the next day, and that's not how it used to be.

Hang in.... so sorry you're having to deal w/all this.
Posted 8/25/2012 4:48 AM (GMT 0)
Sarah, How are you doing. I am having to wait til week of Sept 11th due to vacations etc for stomal revision and to see the doc who gets all the adhesion issues that I have. Yesterday I ate yogurt, egg, and some ice cream and today had muddy watery output until I drank a bunch of juices and layed on my right side. THEN all I had was ice cream, Now I am having a big spit out of watery stuff from my stoma like you described. My new stoma has to be stenosed at some level.

Are you still doing OK. Tomorrow I am going to have to eat something besides those clear liquid drinks. Those actually make me fill bag after bag. So at least I know I am not totally closed. Just coming to the end of my rope. Rosemary
Posted 8/25/2012 10:08 AM (GMT 0)
Just about hanging in thanks Rosemary. Have been feeling ok, just doing liquids, meal replacement shakes, yoghurt etc and doing alright - if not a little weak. Yesterday went nuts and ate 1.5 slices of toast and a little cheese... BIG mistake. Up all night feeling horrible, rapid heartrate and sweaty, no output, then weird foamy stuff, felt sick, bloated. Bleugh. Seeing Surgeon on Friday, so back on liquids and wont' even attempt food until then.

I'm just praying this can be fixed for me with a stoma revision.. there is the chance it might not though, but one step at a time. I don't know if it's adhesions or small bowel motility issue, but hoping it's just the stoma.

I'm sorry you're still struggling too. Hang in there and hope the new Dr's have some answers. Can't leave us like this can they!? Hugs x
Posted 8/25/2012 7:55 PM (GMT 0)
Sarah

You have what sounds like fascial level stenosis. The abdominal wall has scarred in. They have to loosen small bowel from its mesentry widen the abdominal wall and lyse adhesions. IF they bring up enough small bowel you get a good stoma. You do not have the motility thing. Rosemary. I ate yogurt today yeah!!!
Posted 8/26/2012 8:16 AM (GMT 0)
Rosemary I hope you're right. Well done on the yoghurt.. hope it worked through ok.

Frosted flakes for me today... fingers crossed.
Posted 8/26/2012 3:16 PM (GMT 0)
Hi Sarah. So sorry to hear you're still battling like this. I really hope you get sorted soon. If you're going to wait just ensure you take in sufficient fluids not too dehydrate. Not having solids should be too problematic if it's only couple of weeks, as long as you have protein shakes and energy replacement shakes and homemade nutritious blended soups. I've survived on this diet for 7 years with maybe soft food once per week only. Since I came out hosp last month when had my 17 th bowel obstruction requiring admission, I've been on clear fluids only and my surgeon prescribed peptamin shake which is Protein drink formulated esp for small bowel, tastes vile but certainly kept my energy levels up. Lost 5 kgs (about 12 pounds) include the 2 weeks spent in hosp.
Good luck, be strong and hope you can get on theatre list as soon as he's back so you don't have to wait any longer. Thinking of you

Lolly
Posted 8/26/2012 5:21 PM (GMT 0)
Thanks for the advice Lolly.. that's encouraging. Seeing surgeon Friday, so hoping he has some answers soon. Hope you're doing well!
Posted 8/26/2012 5:45 PM (GMT 0)
Sarah

Some days the yogurt goes thru and other days it does not. I have to oder clear liquid shakes and stick to that I guess. I hope I live til the sept 14 revisiona dn the md transport ride out west.

Lolly,

17 sbo's??????????????? Jeeze! Can anyone do anything? Jens pagels in germany uses sprayshield adhesion barrier and doea wonders. He is reviewing my case but the stoma is an extra that hge does not usually deal with he is reviewing case with general surgeon but out west here in us is whjere this really great colorectal surgeon is for my stoma revision so I guess I go here. But if you don't have a stoma dr pagels may be able to help you. Google Jens pagels, MD

Rosemary
Posted 8/26/2012 8:51 PM (GMT 0)
Hi Rosemary

Yip 17 SBO's between 2 and 3 per year which required hospital admission and over and above those I've had others I've treated at home and in GP's rooms! Enough was enough! Thanks for advice re Pagels but I actually had my Ileostomy on Tuesday. At long last - help!!! I've posted another thread detailing my surgery re adhesions and dilated and twisted bowel.

Good luck with your clear diet, I know how challenging it can be!!

Take care

Lolly
Posted 8/29/2012 3:18 AM (GMT 0)
Sarah, How are you doing? Thinking of you. My revised stoma has issues galore but I GUESS SO FAR the narrowing not as severe as yours though not want to wait til it gets that way. I got mixed up with some liquidized cooked carrots that made really thick poo. Thank God it worked through with not too bad of a time.

Thinking of you on the clears. How did the frosted flakes go?

lolly I will catch up with your other thread. Hope you are doing well. Rosemary
Posted 8/29/2012 1:52 PM (GMT 0)
Thanks Rosemary.. struggling on. Being nauseous/hungry, tired, weak and worried is doing nothing for my patience and ability to cope with 2 lively boys during the summer holidays! I'm getting into a routine with protein/meal replacement shakes, tomato soup, yoghurt and other drinks, just about managing to function (work is hard), but still losing weight. Frankly I'm petrified to eat anything else. The frosted flakes did get a bit stuck and didn't have any output for many hours, but whooshed them through with some hot tomato soup and that seemed to shift things through.

I'm sure the stoma is the problem here, but I'm just worried as nothing showed up on my CT scan - although by the point they did it I hadn't eaten for 36 hours (it could still be this motility thing or adhesions maybe?). The only thing I'm hanging onto is the fact 2 surgeons tried to get their fingers in and said they couldn't 'find a way in' and that it was 'tight'. Also my 1st stoma in 2010 worked like a dream!

I just hope and pray they can do something to help me. The thought of more surgery is just utterly boring and it couldn't come at a worse time as my boys are both starting at new schools and I have a tonne of work commitments - I'm meant to be presenting at a National athletics conference at the end of Sept and it's a massive honour. To have to pull out would be so upsetting, but if they did surgery, I can't see how I'd be recovered in time. Ho hum. Could be worse, but I'm beginning to reach the end of my rope :-(

I was glad to hear of your success with the liquidised chicken and carrots! hang in there and hopefully things might resolve? be good to see what the new Doctor has to say. Thanks for keeping in touch.
Posted 8/30/2012 3:52 AM (GMT 0)
Sarah, I am sure yours is the stoma and it can be revised. If your stoma and the old one worked fine then you have no motility issue. The exit is simply blocked. My severely stenosed stoma did not show on CT, or ileoscopy, or on retrograde enema xray. But by looking at it it was very dark red, had lost all it's normal little ribbed markings, and there was NO visible opening. How my current surgeon was telling me this was "functional" and not surgical was beyond me. The guy must have thought I was an idiot or something. Some of them will tell you anything. Plus I was severe: I could not even drink water, I had to be on IV's it was so shut. NOTHING came out ever. If my original stoma surgeon had not been retired, it would have been revised pronto.

THEN the issue with my new stoma I got where I had to hunt for help myself. I found out what was done wrong by the well-meaning general surgeon who did the revision. I have mucosal seeding. This is where the stoma is sewn to the peristomal skin and not to the dermis according to one book. According to the other book it is where no subcuticular stitches are used. The pics in the text book sure look like my issue. Plus the opening of my new stoma is pulled to the left and is therefore not centered, thus narrowing it. May be the reason I have to lie on my right side to compensate for the whole thing being pulled to the left. SURE WISH the general surgeon HAD REALLY HAD his colorectal surgery partner working on the stoma part like was the plan!

I was so LUCKY that the thick carrot crap made it through. I could see this very thin stream coming out of the stoma. SURE lucky it came out as I would have been in severe issues if it had not. Nothing will resolve with this structural disaster of a new stoma, BUT nothing much I can do but keep on the lots of liquid and some light meal type things til mid sept. So far not as bad as yours.

You are doing quite well. As I mentioned my first stoma was so stenosed so bad March - May that toward the end I had to be IV hydrated.

I was just thinking today that one would THINK that stomal stenosis severe enough to prevent one from being able to eat would be treated as an emergency. Just like if an ostomate were in an auto accident and the stoma was badly damaged. Same thing, a stoma that does not work. BUT......interesting that the waiting game exists in England as well as the US.

Too bad about your sports honor end of Sept, but your life comes first. I don't know how you are working, taking care of kids and keeping going on practically nothing. Be sure and take vitamins they have some liquid forms. Hard to stay strong when we cannot eat.

Rosemary
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