Thrusday evening I couldn't get the tube in, rare for me who considered myself a resident expert.By midnight I was so distended that I started to worry about popping something.
I know that a run to emerge at midnight is useless so I called in an spoke to a resident who suggested I go in. For what? I asked but he couldn't answer. The surgeon on call told me to hang in so I did until morning...Hell
I went strait to the 14th floor at the hospital and the It nurse tried to intubate me with no success. We finally managed to get a very small folley cath in and relieved some pressure very slowly through irrigation. They sent me down to radiology to have the Medina put in, no problem.
So, now I am hooked up angain and scared that something is very wrong and that I won't be able to go home. I am not leaking but fear another prolapse, the head of the stoma is popping out again, slighty, but enough for me to be concerned about it.
The Dr. comes back on Mon and I will see him then.
Someone out there, please tell me that it has happened to you and turned out to be nothing!
I can't give up the dream of being well...I just can't
Sharon

Sharon
I can only say; hang in there till Monday.
Let Dr. Cohen take a look before you start panicking.Easier said than done I know.
Let us know how you are doing.

Here I was like an idiot, planning my return home, thinking about moving to a more convienent place in Paris so that I can return to work, letting my husband plan my birthday party home and now I fear that I will never get home.
I am leaking too. Around the median cath. I have drain sponges and gauze but there is no doubt, I am seeping. The stoma is "doughnuting" Or "balloning" up, not lying flat against the skin but popping out on one side...not good.
HOw much longer can I hold on? HOw many more surgeries can I take.
I am officially broke. Haven't paid the surgeon or anesthetist yet. Still owning over $10,000.oo and no idea where I am going to scrape it up.
Bleak feeling today not too rosy of a weekend.
I can not even imagine telling my family that it didn't work again. I cannot even invision the future any more.
HOw did it all happen?
Sharon

Sharon -

I'm sorry this has been such a horrible ride for you; from reading your posts, I can only imagine what it's been like, and that's based on just what you post about, not to mention the other things that never make it up for all to read.

Please do not take this the wrong way, but it sounds like you fought the good fight, so why not look at a permanent ostomy? There are many people on this site who I imagine would say "I wish I had made the decision sooner"...I just worry for your overall health - having this many surgeries reeks havoc on you both physically and emotionally...maybe it's time to consider other options?

Whatever you decide, I wish you the best of luck, any luck, because you deserve some after all you have been through.

Lisa

Hi Lisa,
Thanks for the encouragement...
I tried to post yesterday but my internet was down. Better for everyone...I was too upset.
Anyway, an outside bag is NOT an option. My pouch works, my valve works...my abdomen doesn't.
Why would that be any different with an outside bag?
If I am herniating, I will do it with an inside or outside bag.
So .....Let's jsut hope that it is only a twist and can be fixed
Sharon

Sharon -

I am a K Poucher since March of 06 and unfortunately I have had a surgery in Oct 06 to fix the the first one and a surgery in April 07 to fix the fix.

I too can relate to the disappointment of wanting to get on with your life and not being able to get the damn catheter in on a regular basis.

It works fine for a few weeks until the hernia(s) start to come back.. Oh I can "diddle" with it and what takes 2 minutes gradually goes to 4, then 10 then 15 and longer each time.

It sounds like we have similar problems -- hernias -- Is your problem a ventral hernia or a peristomal hernia OR both? How many operations have you been through?

Alas since July of 07 I have resorted to leaving myself intubated 24/7 but instead of constant drain to bag I can keep the catheter capped...

Dr. Fazio told me the same thing --- you can have a peristomal hernia with a traditional ileo... However part of my problem with the hernias is that they tend to "move" the pouch...

I am tired tired tired tired of being operated on every six months... In fact I was looking for a December surgery and I opted to intubate 24/7 and spend this November with my family at Disney which had been cancelled twice before.

I have missed one daughter's birthday two years in a row, and the other daughter's birthday one year....

My quality of life has been fairly decent since I have opted for the constant intubation --- now I don't have to worry about getting the damn thing in because ITS ALREADY IN....

But I fear my hernias are getting bigger and I wonder for how long I can keep this up -- perhaps a year... I don't know, but let's say I certainly know how you feel.

Does your surgeon offer "hope" for a successful hernia repair? What are your options?

Did your surgeon try using mesh on you. Dr. Fazio used mesh but it has to be absorbable mesh because there have been problems with staph infections in mesh.. I think the mesh Dr. Fazio used dissolved --- and the hernia has reappeared...

If you don't mind I'd like to know what your Dr. has told you...

Thanks

Al Fine
imalfine@gmail.com

Well. for now, not much...yet...he can't see the problem for the moment so I am watching closly until I see him again on Monday...then we check again and if all is well, I go home....I pray that it is nothing but this is the 3rd this summer and the 11thprocedure ( big and small) in 7 years...getting tired of it too...so is my hubby...quality of life FEAR!
That is my permanent state, FEAR.
I trust Cohen wholey, no contest...fidelity maybe but that is how I feel, and outside bag...no, not in this life, not for me anyway.
I just can't. I made my decision 29 years ago, It has not changed..I can not go there.
My hubby says who cares? The answer is "I do" and Ido.
It is my body. my life. I can Not.
We are calmly(!) waiting for the weekend to pass and see if there is any change. I hope to God that I am fine and that Ican go home...that is all I want...to be healthy.....
Or die trying.
Sharon

Sharon -

I admire you chutzpah and your resolve. And it seems that your husband (and my wife) feel the same --- they just want us "well" and happy -- and having our lives return to "normal"...

My girls are on "pins and needles" hoping their long awaited trip to DW doesnt get cancelled for a third time -- and quite frankly short of being life-flighted to Cleveland I will NOT disappoint them...

I just couldn't believe your thread when I read it... I will pray that everything goes well for you.

I fear that at some point in the future I may end up having the end ileo and my worst nightmare is that the peristomal hernia will return and I will not be able to find an appliance that will fit properly. This is why I am leaving this catheter in and capped until I am forced to make that critical decision.

Once again our prayers are with you... And if your DR. finds something that works on the hernias please let me know!

Alex

Hi Alex, so nice hearing from you....I see that you are from Illinois...I was born in Chicago....
Anyway, I was at the cottage this weekend, firmly believing that if I can't survive the 3 hour drive and the weekend away, then I can not fly 8 hours to Paris...
So far, so good...I see Dr. C today at noon and hope to G-d and all of his angels and saints and anyone else who cares to join in, that I am fine, nothing is tearing, herniating or rupturing....Scared?????YES!!!!!! To death....It is my birthday next week and I want to go home and be healthy for it...not just visit my husband and fly back in an evac plane!
Just for my info...What do you use to "cap" your tube and is it leak proof? Does it work?
I had to put myself on strait drain before I flew back here in August and used a system of 2 clamps and a plug to keep it closed and drip free...what are you using? They threw mine out in O.R and I cannot seem to get any others like them here...
I still don't know why we herniate or how to prevent it or avoid it...I never had the problem before this summer...I have stopped bending, picking things up or straining but what if anything else can I do?
Please, please, enjoy DW with the family...we can not let "this" stop us from living and being who we are....
My grandson(4 years old) ( from my hubby's daughter) asked him on Sat. night if I was going to be at the Bar Mitzva that they were all going to the next day. My Hubby said no but that I was coming home soon...
He doesn't understand where I went and why I "don't" come back. He misses me terribly and thinks I have left them.......The baby has stopped asking about me altogether ...she is 2.

I bought Holloween stuff to take back with me, for their annual party, when I arrived and packed it away...I missed Holloween
Now I have brought Christams stuff...
I really don't want to be buying Easter stuff too....
So, wish me luck, wish me well and I will wish you a wonderful DW.
Sharon

Hi Sharon!

So correct me if I am wrong: You are in the "States" now but wanting to go back home to Paris -- but if you fly back and have further problems you will have to turn around and fly back to the States....Oh -- and I thought I was dealing with stress... so sorry.

Let me know how your Dr's appointment went. I hope for and wish you the best.

Regarding the constant drain.

If you use a "Waters" Catheter (Some refer to it as the two slotted Weber and Judd) for constant drain you can take a Marlen 30 French and cut the bullet tip end off about one and one half inches -- inserting the "bullet end" into the end of the Waters and it should fit nice and snug and create a waterproof seal.

Obviously you might want to "test" it out. It works for me. I have never had to worry about gas popping it out, however if it is "wet" when you put the plug in be sure and wipe any excess moisture off.

Now when you go to "uncap" you have to work with it as it is "tight" plastic on plastic" but it will come out and it is re-useable. In fact the only reason I had to replace the one I had been using since July was that I lost the other one.

I keep about 10-12 inches of Waters catheter extending beyond the stoma appliance and I loop it under the belt. I use Johnson and Johnson nursing pads under the plastic appliance. Those pads seem to be the softest and keep skin irritation down.

So far so good. And based on the fact that if I have an end ileo I could still wind up with a peristomal hernia I think I am going to employ this system until it doesn't work for me --- to date I don't have any problem with incontinence around the catheter with my cap in place. I fill up with gas just as if the catheter was out. If I don't uncap it can become very uncomfortable.

I so sorry that you have had to miss time with your husband and family -- that is hard...probably the hardest part of the "chronic" problem we face...

Christine and I are older parents. I am 51 (Christine is 44) and we have a 10 year old and and 8 year old -- both girls.

Thanks for the well wishes... Disney is looking like it will happen this time... My eight year old is counting down the days...

GOOD LUCK!!!! Please let me know how things go for you...

Alex M. Fine
imalfine@gmail.com

Hi Alex,
Well, I am set to fly out otomorrow...loads of trepidations, fears and galloping paranoia...the doctor says to go home and enjoy life...for the moment I just want to survive the flight and the landing!
Yes, fear is my friend..evey time I go to inubate I check to see if the stoma is"sticking out" more, ie. prolapsing.
Once you have been there you never go back to "normal" again. It lives with you.
I am in toronto for now, staying with the best friend that life could give me and her family.
6 months in her house, living between her sofa and the attic loft she built me...a confortable place to call a second home...she has chauffered, changed dressings and held my head over buckets during occlusions, inserted or tried to insert tubes and cleaned up gallons of S--t!
Paris seems to be a lonely prospect after this.
General strikes and isolation in my little suburb scare me..no doctor to help if I need it and noone to understand what is going on either...I never do pick the easy road, do I????
But life goes on...that is the one thing that we learn as ostomates, people with alternate exits, as I like to call us. I am output challenged. What can I say.
I will go home and start life again, doing what normal people do, knowing that it is all so fragile, delicate and that we are all so very lucky to even have had the chance to live with a K-pouch. The freedom and pure pleasure of not having external attachments and accoutrements. I pray to G-d or whoever else one wishes to pray to, that all will be well and that I will have another 20 pain free, leak free, stress free and blockage free years. I want to put it all behind me and go forward to live a real life again.
Good luck with DW, and enjoy the children, I will try to enjoy my grandchildren again...if they remember who I am!
Sharon

Sharon
Hope I'm not too late to wish you a good flight home. I'll be optimistic for you. The trip should be event free

Hi everyone,
Back in Paris after an uneventful flight.
Though I had major trepidations, I came home, to celebrate my 47th birthday with my husband...he deserved to have a reason to celebrate.
Well, I am now more than sure that something is not going right. The tube keeps sticking or blocking..it has happened twice so far that I haven't been able to intubate. Thanks to Holly and her generosity, I recieved a care package in the mail the day of my departure that was the most precious gift that anyone has ever sent me...a package of tubes in various diameters and thicknesses...I have only had success somedays intubating with the smallest gage one...i cannot even beging to imagine that this did not work.. can't even dream it.
couldn't sleep all night, pure fear. I got stuck again. Managed to empty out after a few minutes and couple of tries. today I am sticking to the smallest gage all day long. Means that I am back on fluids...not a big deal but I didn't go through all of this to be back to square one after 3 days home.
Dr. C says that it cannot slip or prolapse after what he did to it..let's hope that it is some sort of readjustment...maybe sudden weight gain.
Don't know but I am having a real hard time suffering fools gladly today. The idiots who call me and tell me how they are on tranquilizers for pitzy B.S. are getting blown off today. Don't know why I am being such an insensitive person today must be that broken nails affect me that way...if they only knew what hell is maybe they would shut up and thank the heavens for perfect health.
Soory, just had to blow that one off...
Anyway I am up for any encouragement that you can send other than getting an outside bag...won't help anyway if this is another hernia in progress.
Sorry for the not good news...
Sharon