Test today ;( Added Picture

Sounds like what am recovering from... Small Bowel Obstruction... Been in the HOSP. For like 3 weeks. Had an NG tube thru nose and now on TPN.... Heavy Duty SUPPLEMENTS ETC. via IV. WAS ON CLEAR LIQUIDS

Sorry it wouldn't let me type anymore ... So upgraded to full liquids and will go home tomorrow hopefully on lite low residue diet. 

The pain was sooooo horrific I could hardly breathe. My weight dramatically dropped to 83 lbs. 

i am feeling so much better. Lots of Luck , prayers to you❤️

Btw... The obstructions were from adhesions. So sorry you have to go thru this!������

Thanks Janie,

I just got home with the results in a bag...

The good news: My pouch is still attached to the wall and sitting strait.

The bad news: the valve has a very deep divit...it has had one since 2012 but it seems to be much deeper and sharper...so now it looks like there is a side road leading into the valve at a very sharp angle (or the beak of a eagle facing outwards)...which is probably where I keep getting the tube hooked...it goes in ok but when I try to pull it out the hole on the side of the tube catches onto the edge of the divit.

My radiologist is very funny...he said that he had no problem getting the tube in...he is using a 16 and I need a 32...and I was laying flat on the table...asked why I couldn't intubate laying on the floor???! (In a school bathroom with stalls??? Are you nuts?? How would that work? I watch my students feet go by as I intubate laying on my back in a puddle of G-d only knows what???? or maybe in an airplane bathroom??? How do you intubat for the rest of your life laying on your back?)

So for now I am going to send out the films to Dr C and see what he has to say about it.

I am not as scared as before except that we didn't do an upper g.i...to check for the blockage...that will be the next exam.

At least the pouch is not twisted or down....

I tried to download the pictures but cannot seem to do it

Sharon

ouch, the bad news is nasty stuff.  you did give me a good laugh thinking the doc figures it's ok to be on the floor, in whatever people haven't cleaned up, and intubating.  or perhaps, when on the airplane, try the aisle?

i use a marlin 30 fr.   when i was having problems intubating an ostomy nurse gave me a marlen 26 fr--i think that was the size-- and i found that it was easier to insert, but it would bend and catch.  i think it didn't have enough structural strength with the holes.  also, the holes were a bit smaller and if anything i needed larger ones.  the holes on the next size up catheter had the same size as the 30.  all this to say, have you tried a different size catheter?  perhaps it would ease some of the current problems.

would it be better to insert the catheter when you are standing or knelling?  still some of the same problems, but at least if knelling in a public bathroom you could put some paper towels on the floor.  would mimic the laying down position, so long as you can keep your back straight/upright posture.

keep us posted.  great attitude as always.  peace, janet

Thinking about you, Sharon, and hoping this has a really good outcome. Sounds like partially good news - let the rest follow suit!

Ok, so I am having metal flashes of all of the places that I live, work and go to in life where I would have to lay on the floor to intubate...the public toilet in Walmart, a chinese restaurant in Paris (you could not get a 2yr old to lay down there...They are soo small...I cannot even turn around in the school toilet stall...I have to walk out strait (the door is on the side not front) and walk back in facing the other direction, no laying on the floor is out.

The fun part this afternoon was arriving, waiting an hour with a nervous hubby beside me (first time) and then going into the cubicle, getting undressed and putting on the paper gown, getting set up on the table only to find out that the Opac liquid was expired, the pharmacy in the clinc was closed (pharmacist took the afternoon off) and the one across the street was out of stock.

Got dressed and waited while the secretary call every pharmacy in the neighbourhood and then sent hubby to fetch...he was very good about it...Too scared to say no.

I love my radiologist...he just waited...did the test laughing and smiling with me the whole time.

Now I need to understand how to not damage it worse.

Can I shrink it? (hemoroid cream?)

I have started using a 28 silicon strait catheter...works ok but awfully thin...cannot really eat much in the way of solids without purréeing them.

Brain going 100 miles an hour...waiting for the prototype for the silicon valve and hoping that I won't need it.

Sharon

what is it about the lying down position that makes the catheter, upon exit, not hook on the valve's divit?  am trying to figure out why you can't kneel in front of the toilet--first putting paper towels down upon which to kneel--to get the same position.  not ideal, but perhaps an option?  janet

Sharon - I hope other scope also give you good news.  You are a trooper - this does go on and on - your laughter and humor help and you also help me and so many on this site.  Keep us posted.  So sorry you are going through this.

If anyone can figure out how to get horizontal to intubate it would be you Sharon.  You could figure out how to do it standing on your head if need be. It's a big problem but you are a fantastic problem solver. Please consider all of your options, including an ileostomy.  I'm not trying to talk you into one as you know how I agonized over diverting from my j-pouch to one.  Do I like it? No. Is life better using it instead of my j-pouch? Yes. I don't know what all of your options are. Maybe if you did a pros and cons listing, on paper, of your differing options it might help you going forward.  You are so much happier in your career from several years ago. You've had a rough time and unfortunately your little body is not cooperating.  I chose the option that allowed for me to have a better quality of life. The option that got me off of bathroom floors. The floor is not where anyone should need to go. 

Thanks TE,

By the way, how are you doing? How is the ileo doing and what is the sleeping pouch up to? Is it calm or giving you trouble?

I am searching for solutions.

For now I am mostly back to simple, easily digestible foods, blended, mashed, mixed or mush...less and less raw veggies (sigh...) and less carbs.

I am blocking up again today after last night's chinese binge with hubby post test (I had not eaten solids in 30hrs)...only had grilled chicken, some salad leaves and this green gunk that I think is algee (news: my valve hates algee)...plus dessert (ice cream)

I think that half of the meal is stuck just south of my stomach on the left side where the loop of bowel was liberated from adhesions...I feel a lump and a gurgle just above it...it hurts when I press on it or breath deeply.

Will see what the night says...either it goes through or doesn't...hot fluids and juice until it passes. At least I know that the valve is not twisted.

Standing on my head? Not something that I had thought of but you may have something there

Hugs

Sharon

Sharon - oh that feeling of it being stuck at that certain place is so awful - all the pushing on it and rolling around...heating pads have helped me, too - and yes, warm liquids - coffee being the one that helps me the most - I do decaf or half caf/half decaf - tea just stops me up.  You are great at researching and giving it all you've got.  You are amazing that you work so hard and deal with all this.  I know no decision seems like the right one now - or you'd have made it.  So....maybe do your pros/cons and wait it out some more if you can. I forget what you weigh now - but if you are still able to work that hard..you must be doing something right!   I find your get up and go to be very amazing.

Thanks for asking Sharon. I am doing much better than I imagined and wish I'd done it before. I don't think my j-pouch is bothering me but I am still having pain which my Internist has concluded is still due to adhesions.  My surgeon spent 3 hours digging through and lysing them during my diversion surgery, therefore I expected for all that pain to be gone   I still don't eat much red meat but don't even like it anymore. I am happy to be off of the soft food diet I was on for 8 months prior to the surgery.

This is why I want you to consider getting an ileo.  You can stand up, sit down use a cup to empty into if need be  You might be better off in the long run as it makes using public restrooms easier for me than the last 20 years had been.  No more rushing or staying at home. I can eat again but still have my super protein fruit/veggie smoothie daily. If anything all of this has improved my diet.  I have figured out how to eat better than before my UC turned so bad.

As you know I have many other medical problems and won't ever be able to work again, not even part-time  I'd rather be working and agree with you.  You need to use your God given gift.  The young minds you are training need you too!  

You said your doctors are aging and so on. Maybe it would be possible for you to go to a permanent ileo as you wouldn't need to worry about how to empty your k-pouch and have surgeries to fix it.  Plus your diet could be much better.  You might even be able to go out to eat with your family and friends again!  

The members on here that told me a permanent ileostomy was better than a temp one were right.  I had a horrible time with the temp one and was constantly battling dehydration.  I thought it was the final choice I had to make and now wish I had made it sooner. It comes down to a quality of life decision.  What can you do to make your quality of life better?  What can you do to allow you to continue teaching and running from school to school?  What can you do to ease your husband's worry and make his life easier as well?  

Sharon

For what it's worth this is what I did for the last really bad blockage. It was during my J pouch days. Over the course of the evening, say about five hours, I drank just warm water and gave myself warm water enemas. I was worried something was going to burst, but eventually the small intestine unkinked. Then spent a couple hours on the toilet, as I recall. Was so very fortunate as was traveling by myself in a third world country and had no idea how I was going to explain this to any doctor.

I'm sure you have your own solutions and it's a matter of figuring out which one works for this particular problem. Good luck and hope you're comfortable soon.  Janet

I hope you are doing better.....

The partial blockages come and go...I seem to have either a kink or adhesions in the same spot as before...it could be a narrowing for all I know.

I eat either toast or soup most of them time avoiding all fruit and veggies and as soon as I do it feels like someone shut my whole system off...a punch to the gut.

Eventually things go down or through but it is like a traffic jam at the same site...gets painful, bloated and I burp like a sailor for a couple of hours then things move...I am doing a lot of stretching (hands up over head and reaching up to the sky) and that seems to help...not sure if that means that it is a kink or not.

For now hubby is starting to understand that it is serious.

Between the blockage and tendonitis I have aged 25yrs in 1 month.

Work is an exercise in torture...going there is pure terror...some days I look like a contrortionist in class trying to stretch it out without it showing...

Even yoghurt hurts...I am using a new tube...a 28 silicon with bullit tip to empty...it helps and hurts me less.

I will ask my surgeon to order an upper g.i. exam...maybe I will get answers that way.

Sharon

sharon

when i had nasty blockages, on a weekly basis, i took various meds, which are a type of valium for the intestine.  they sort of worked for me.  not sure if it makes a difference, but i had a j pouch at the time.  my symptoms were a tummy ache that increased into nausea and killer pain, evacuating only liquid, and when the kink let go i'd be on the throne for quite some time.  the meds, in order of most effective, as follows:

hyoscyamine sulfate, .125 mg sublingual.  take one tab four times daily, as needed.  i'd often take 2 or 3 within an hour--was a desperate woman--and didn't have an adverse effect.  it would take several hours for the blockage or kink to ease.  

hyomax-SR 0.375 mg 2xs daily; this is a time release med.  it worked for awhile and then i stopped for some unknown reason and it didn't seem to make a difference.

librax.  don't recall the dosage, although i took it 3xs daily.  it caused me to be quite dopey/exhausted.  not certain it was the correct med for the problem.

also, when i went on the lowFODMAP diet the blockages eased up.  when i had the k pouch surgery--now 3 months out!!--they removed the lesions on my intestine and i haven't had a blockage since.  loving it.  am off the diet.

keep trucking  sister!!  i'm cheering you on and sending healing white light.  janet

Sharon - I don't know how you keep up with all this - the work - I know it sustains you and you love it so - but is it possible (do not get mad at me) - that you need to slow it down - just a bit. Is that possible?  I just remember being in a similar situation and working myself to death and totally collapsing - and I look back and go "for what" - in other words - I did not have to save the world - someone else could do some of it Just a gentle suggestion - you fight however you want to fight - but I don't even know what you weight now - and I am concerned you are overdoing it.  Don't I sound like a nagging mother?  You know I admire you so, Sharon - please don't be a person who always does so much for others without ever asking for help in return.  I just truly care about you as I have gotten to know you on the forum - I think you have a fan club of us out here - and we care that you take care of yourself.  Corny, but it's the truth.  Others out there - please tell Sharon - she can fight and take care of herself too  I wish I could meet all you people - wish we could blink - forget the travel - and instantly all be well and at a table in Italy toasting our online friendship and "the good life"  I can dream!

Thanks Angie, Janet,

You are both so sweet,

I have cut down to 2.5 days/week for this semester so yes, I am slowing down a bit..hubby is now financing the cleaning lady and picks me up nightly from the tram...Won't let me walk in the dark over cobble stones any more (smart man).

I gave up the back pack because it was throwing off my sense of balance (what sense of balance?) and I was falling more with it than a regular sack...back to wearing army boots or similar with heels...Uggs are out for tendonitis...need heel hight...

Yesterday, for the 1st time in months we went for our walk in the park...2 laps, 5xs up the hill and a bit of air-boxing and stretching...it actually helps the blockages to sort of unkink things...Then a bit of gardening...it was the 1st day that I did not want to crawl under a rock and cry.

I made a huge pot of veggies soup and then blended it...it seems to go through eaiser than anything else (onions, leeks, carrots, tomatoes, potatoes, parsley, cilantro...) but still blocks at the site...hands in the air and stretch...I burp, and it gurgles down...I feel like a 1yr old!!!!!!!!!

My weight is up, not down due to the frustration eating of pudding, ice cream and milk chocolat (all low residue )...not good either but will call for the upper g.i appt today...and will see the ethiopath this week...Maybe he can untangle my guts?

My valve is behaving funny enough...the smaller tube helps a lot along with the bullit tip...seems to navigate the 'elbow' better but I cannot eat anything that is too thick because the darn thing takes forever to empty out my pouch...it is like trying to drip mollases out a straw in winter! I irrigate the darned pouch 10xs with each empty (veggies soup !) but at least things are moving more.

I will ice, massage and strap the ankle, go for another test walk and see if it holds...Back to work tomorrow and a 12hr day.

Thanks girls, you are my optimism and hope.

Sharon

Thought that I would add the most recent a picture of the pouch and valve: You can see the deviation or elbow bend in the valve very clearly.

Sharon

sharon that's absolutely amazing looking.  i don't know what a normal one should look like, but knowing how the valve feels, upon inserting the catheter, i think it is straight shot into the pouch.  just to clarify--is the 'elbow' what they were calling a divit?  what's the next step, now that the docs can see what you have been explaining to them?

glad you gave up the back pack--was going to suggest a brief case on wheels--and eased up on the schedule for awhile.  love the idea of the cleaning lady!!   wouldn't do without my dear gladys.

couldn't use the 28 fr due to the slow navigating through the tube and the smaller holes that prevented passage.  can't get it through my head that sweet potato chips and other carbs equals think output and i love my pureed soups--just finished off a fab mushroom and leek one and wish i had written down what i put in it, but as usual i think i'll remember....   am always irrigating, which is easy to do at home.  although it takes time.

somebody on the forum suggested miralax to thin the output.   the ostomy nurse said absolutely not as miralax is only for the colon.  i'd like to hear others' opinions.  am willing to try it.  any idea on dosage?    

just some thoughts.... janet

Janet,

Yes, it is usually strait into the pouch, no elbows, no left turns...Haven't seen the surgeon yet but I already know his answer...if it is still functionning...I ain't touching it!

He does not do k pouches but does everything outside of the pouch including fixing peristoma hernias and putting the darn thing back up on the wall...but he will not fix the valve.

Not his level of expertise.

I do not have a k pouch surgeon here (there aren't any)...so I would have to go back home for this  and it is a full blown k pouch redo. They need to open up the pouch, take down the valve and build a new one...not going there...for now (if ever if I can avoid it)...I have been through that twice and it is not nice at all!

I heal strangely and cannot handle another 5yrs of redos on top of redos (my personal healing experience)...for now I am waiting for Dr C To get back to me but I fear that he is in full blown retirement...not good for me because I have no other angel to care for me...

If I can navigate with a stait 28 cath (something that I did not have while away) then I will keep doing that forever if possible.

The case on wheels is out...worse thing ever over here going over 2 miles of 100yr old cobblestone sidewalks (g-bump-g-bump...)and up hill...worse than you can imagine...tried it a failed miserably!

For now hubby drives me 1xs/week and I walk 2xs...

Back to the salt mines

Sharon

I tried to figure out photos - I think I understand them, but not sure since mine is a J and not a K.  Whatever the case, I know you are giving it al you've got and then some...and then some more.  I am relieved to hear to are cutting back a little- and that your husband is picking you up...etc. - I think you mentioned he did that before.  Smart man. Good for you to have to better day and make the soup, get out and exercise some, etc.  - those better days are priceless.  I hope someone can answer on here about something to thin out your output - it is difficult to get nutrition in with these pouches...one of my big struggles, too.  They can say all they want "your small intestines absorb the nutrients" - and I know they do some, as we'd be dead otherwise - but still, when food goes straight thru you all the time, it feels like you aren't getting much energy or nutrition. 

Today I had a dr. appt. in downtown Dallas...I had a full blown panic attack and had to cancel and re schedule so my husband can drive me.  I felt so silly and ridiculous.  This is the first time I have had this happen (not a panic attack  - but one in which I felt "I cannot drive in all that traffic" by myself).  I share this not because it's a big deal - it isn't really...just makes me feel so silly and old.

Keep up your fight and we are here to support you, you precious lady.  I admire you so much for your tenacity...those students are very lucky to have you in their lives. 

I will not ridicule your painic attacks...They are ever so justified...it is our way of dealing with certain stressful situations that we cannot control...I get the fear of driving some days...here in Paris it terrifies me...I know that I should but I just don't trust them...or me...in this crazy city.

This morning the trains were jam packed...so much so that we were nose-to-nose and hip to hip squished like sardines.

I had a minute of rising panic in my throat...my stomach clenches, my heart races and I cannot breath (feels like they are crushing my lungs)...when I had the indewelling cath for months at a time I would wait out train after train until the crowds thinned out...fear of crushing my abdomen...since then I have had occasional attacks and become somewhat claustrophobic too (that started during a transport strike when I was being crushed against a metal bar in my back in the train and bent backwards over it...Screamed so loudly that they had to push me out of the train...I walked home!).

Tonight hubby was going to pick me up as usual...takes 45 mins by train then 20 by tram. Just as I was leaving I ran to the ladies room and emptied, just in case...the tram never left the station...it was raining, there was a car/tram accident and the car caught fire...no tram. Shared a cab going the wrong way (Paris in the rain)  that took me 1/2 out of my way then double traffic back...all in all 2.5hrs transport...so very glad I hit the W.C. before leaving school! Those are the little tricks...no matter what...always go to the w.c. before you leave somewhere...Especially if you have a k pouch...you just never know when you will be stuck and won't be able to intubate.

@Janet

In order to thin out your output you can do a lot of things...

1 Prune or grape juice

2 hot green tea or coffee

3 'diet' teas that supposedly help clean out your guts (we call them cac-cac teas)...use only 1/4 dose first time round...they can be very violent to your guts and dehydrate you

(4) Colon cleanser pills sold OTC...again 1/4 dosage and only if you are sure that you are too thick to empty out normally (like going camping where you do not have any choice) or in a foreign country ( I use extreme prudence when suggesting this...please do not try this when away from home or if you do not know how your body reacts...)

5 most citrus juices on an empty stomach

6 hot lemon juice and water on an empty stomach

I would honestly say that you would do well to stick to juices and hot fluids and avoid any and all chemicals, especially this early in your k pouch life

Sharon

Thank you Sharon - for all the tips and support you give to K pouchers and J pouchers alike.  Wouldn't wish a panic attack on anyone. 

thanks for the tips sharon

as i gag at prune juice and dislike lots of other sweet juices i just recently cut juices out.  and my output consistency is better!  got me.  might be because i've been drinking more herbal teas and some coffee, although it is decaf and i add cream.  i make up for the caffeine with my chocolate binges.  have been eating oranges and spitting out the pulp, so there is the citric component. 

i like the idea of lemon in hot water and will add that to my drink list.   checked out the ingredients for diet teas and will avoid them.  also, not inclined to try the miralax unless the doc suggests it.  yup, still taking things carefully and slowly as only three months out and learning every day.

my far more challenging problem is the gunk/sludge that clogs up the catheter.  lots of irrigation and squatting over toilet to encourage it to run out.  i think there must be some spray for the inside of the catheter that would make it extra slippery so the gunk would zip through.  or load the syringe with olive oil and insert just enough that the oil stops short of going into the pouch?

sharon, this might be a long shot of a suggestion, but i'll throw it out anyway.  if you do decide to get the valve revised--if that's what's needed--you might consider dr. kiran at columbia in nyc.  paris to nyc is doable for transport, but i don't know if insurance would cover, which is big issue.  Kiran had previously been at cleveland clinic.  keep us posted.  we are cheering for you.  still can't understand how you can navigate the catheter past the elbow!!  amazing.  janet

Janet,

I do the orange thing too...I chew, spit, chew spit...Same with pineapple and some other very fiberous fruits.

My orange or clementine juice + coffee & water in the morning works for me to clear my pouch by noon...I eat no solids until my pouch is cleared (yup, it is a lifestyle choice and not advice)...I cannot function at school any other way.

Need to be sure that the pouch clears and I do not block before I put anything else in it (the anything else is yoghurt, a banana and apple sauce)...I cannot afford to eat solids or fiber when at work especiallly since my valve problems started a few yrs ago.

As for the thick sludge...

1 carbs make your output thick, proteins do not

2 a high protein low carb diet helps

3 soups are great friends

4 a hand held mixer helps too...you can purée tons of stuff so that you have less chunks to block up your tube

5 increase fluid intake (teas, hot water + lemon)

6 Irrigation helps (use warm water instead of cold)

7 I have a little 2-3oz spray bottle of carrot oil (full of Vit A and great for skin) I use to spray the tip of my tube (as lube)...I could, spray the oil into the tube if I wanted to...you can too, just make sure that it is an edible oil...but you should not need to...if you are using a silicon tube that may be why. Things tend to stick more than in the plastic tubes (but silicon is more flexible so easier to use)

8 You may wish to try to intubate sitting instead of squating or standing...makes it so much easier to do and easier on the knees.

That is it...The tips for the day

Sharon

Angie, 

I still have days when I ask my husband to drive me to the appointments that I need to take the interstates to. One of them is about a mile from where I worked for 3 years in the early 90's. I always made it to work when there was sleet, ice and/or snow when people much closer didn't come in. I was frigging nuts! Now he has to drive me. I have cancelled appointments with my therapist because of this before. I am usually in more than the normal amount of pain and it distracts me. We don't need to add something else to recover from!

Sharon,

I didn't know you had a jellyfish acting as your k-pouch?! It looks like you swallowed one and it's tentacles, or whatever,  are crooked at the exit. That barium can really make some interesting pictures of our mangled innards Serouisly I think I can see the problem and that means it is probably bad as I know nothing 'bout birthin' no pouches! 

Sharon and Te Marie - thank you for all the suggestions/compassion/understanding.    OH yes - the chewing of the fruit...today I made the dumb mistake of eating 3 very small pieces of fudge with some coconut in it - I know this is bad for me - I chewed the heck out of the coconut - I am paying for it now - it's not a total blockage or anything - just pain and a big ball of it stuck in my pouch - I can feel it.  Mea culpa.  That is where I get into trouble - I know I should not eat that - I should have had none or one - but it tastes so good...etc. etc. - small pleasures and knew I would pay for it.  Oh well.  All the advice you two discuss about the k pouch in terms of foods/drinking/etc. I truly think apply to my j pouch - so all that information is helpful.  I know I can't understand how hard the k pouch is - I am so sorry you are enduring those - thought I've had dreams of wanting the ileostomy back just not to have to hurt as much...but I know ileo is a fantasy - remembering how when I had it I was never in pain - but the bag was not lovely, etc.  Which is why I understand how much you are trying to hold on the k pouch.  It's something that kicks in about dignity - and of course..there are times when there is not choice.  But, for us, it is worth the battle I guess.  Thank you precious ladies.

Angie,

We all eat the wrong things sometimes (for all of the right and wrong reasons)...I never, ever eat white flour or fat...no crisco, no white pasta or bread etc and I rarely eat potatoes either ...it all turns to wallpaper paste in my gut and my pouch hates it!

So today, instead of throwing out the fresh pasta I cooked it and ate it...with butter and cream.

Needless to say, my pouch is pissed. ..wallpaper paste! Big time...now I remember why I stopped eating it...lots of gas...cramping. 

You live and learn...and then forget what you learned.

Funny, I tried to stand up after eating some homebaked cookies (I will never learn)...and my legs were jelly/heavy...it saps my strength and energy too.

Another 6 months until I forget and do it again.

TE

Oh, yes, a great way to explain it! Jellyfish. Navigation sucks but I am trying new tricks...

Sharon

LMAO Sharon, you can be so funny without being offensive  

Thanks TE,

Comes from being a teacher...you learn to say everything that you need to say without every really saying it!

The are of 'not speak'!

Sharon

You are both great!  Yes - you eat things ---you pay - time passes- you forget ---repeat.  And sometimes, the thing that caused the problem does not the next time.  Makes no sense  Of course it makes no sense - it's life! One must grab hold of humor more and more as the years go on - that or be sent to the bin - I prefer my own bed with my own toilet....and I know you two do too.  Thanks for making me laugh you wonderful ladies!