Dilator out but severely swollen painful stoma-Rosemary

OK so Tuesday they put in this quite thick dilator into my stoma.  they said flexible but it was very rigid.  made the bag stand out away from my body and put a lot of pressure on stoma, was in severe pain by the time they removed it this morning.  I was supposed to remove it Thursday BUT the resident said it went in 10 to 12 cm when i asked how far does it go in?  I told him and the stoma nurse yesterday could they remove it as I was not trained in such things.

So this morning a social worker i hired drove me over I was in agony.  The resident slid the tip out and it was only in an inch.  Now I would have removed it myself yesterday if i had been told it was only in an inch!

so today the resident said my surgeon was busy with another patient at the time i was supposed to see HER!!!!!  The resident gave me these flexible rubber urology catheters to put into my stoma about an inch and a half in 3 times per day for all  weekend and each time leave it in there for 30 minutes until tuesday at which time i see the ostomy nurse.

he started his conversation saying no more emails to the dr.  (she does not get some of the important messages i leave with the secretary I only got action on the severely stenosed stoma tip by emailing her)  Then he said no more calls to the stoma nurse.  If you leave a message with the secretary she "puts it out to the team" then someone calls you back SOMETIMES THEY DO THAT IS!

So I tried one of these "dilations" for 30 minutes today.  i put it in at the angle the resident showed me.  this morning he said when you meet resistance, keep going a bit more to a mark he put on the catheter.  this is not to suck out poo it is just to dilate.  BUT if the big one was only in an inch, I questioned whether to push into the small intestine until you get pain.

so seeing as i have been "forbidden" to call the stoma nurse, it's not like i call her often nor do i even want to be mucking about at hospitals at all, so i went over and just said I am supposed to perform this procedure on myself 3 times per day for 30 minutes at a time all weekend and i am afraid of perforating myself can i ask a stoma nurse a few questions for just a few minutes,

one did come up but she said do not just show up again, if you do you willlikely not be seen.  then shen said you have been changing appliances for years why do you need me,  i had not had a second to tell her what my question was.  i took out my camera to get the catheters from my bag and she said i don;t want to see any more stoma pictures.  I said I am reachiing for catheters.  i explained the pain issue and do you go until you feel pain, she said if that is what the resident said then do it.  this is not a stoma nurse issue.  she said you need to realize this is a tough case ....................DUH!!!!! AND IT'S MY LIFE ON THE LINE!!!!  she said are you sure you just aren't up tight.  yada yada yada.

i asked which way the intestine goes under the stoma left or right.  seeing as my opening in the revisied revision of the revision of the revision is on the left you go in at an angle but then do you go left or right.

My stoma did work very well after they took the huge catheter out that was like almost as big as the stoma, but now it is not working so well.  the whole thing is so swollen.  The beginning of the blame the patient this is starting and the aspersionn of oh are you just up tight are startiing.  Like who would not be if they had had to have 3 revisions in 6months none of which worked and the original doc had retired and his successors had left me severely stenosed for 3 months??????  and this was all a "mistake" to begin with, they would not be too thrilled either.

my doc is "out of the country" again next week and the resident said the stoma nurse would see me tues for follow up.  she said why would i do that.  i said that is just what he said.  she looked and tues at 11 i am on the schedule.

at oone point i had asked the secretary if i could get a consult with an older surgeon who had made a lot more stomas just for a look see.  she said NO.  well some friends i have made here at the hotel are well like, if all is not going well and i am being told not to call, not to email, not to go to the office if i have

questions, and i have had 2 failed revisions here, then why would i not go on a consult.

the resident said force yourself to eat real food.  real food still gets stuck.  right now this stoma is so swollen and i am in so much pain around it that i would not stick anything into it.

i have read that excessive dilations of a stoma can actually inflame it and scar it and make the issue worse.  If it is stenosing which it is (it is now under tension so is stenosing) then will all this poking make things worse or better.

Tuesday I had to be drained and i had huge diarrhea.  then real food got stuck in back of the stoma and in back of the stent tube.  I had to walk miles and drink grape juice and thin it down.  then after 2 days and a night, the stoma had stretched enough so i could get out yogurt and cream of wheat, but now the swelling is so great that even protein milk is hard to get out.  I am drinking salty gator ade.  I think I will take some anti-inflammatory and cool on sticking anything in there tonight as the stoma is already bleeding a bit.

i think this is a lost cause.  people are getting all pissed but its not my fault and I could die.  nobody gives a crap.  that is the medical system WHEN things do not go well.  When they go well we are all shining stars.

DOES ANYONE ANYWHERE KNOW OF ANY EXPERT AT REDO's of stoma's.  One ostomate said at some point they have to relocate the stoma to the other side of the abdomen.  due to scar tissue.  i did not consent to the removal of my unused colon and this surgeon did it anyway.  thus making more scar tissue.  she wrote in the op report i had asked about colon removal which was a total lie.  i had asked about rectal mucous suctioning.  when i saw the lie i should have booked.  I am going to go down in "the system."  is no place like this anywhere in the world???

Rosemary 

Rosemary, in the medical system I currently get care in, you are not required to see or respond to a resident. So what I am saying is.. demand to see at minimum a fellow, but try even for a real surgeon. I had several experiences where residents did more harm than good. In fact during my last hospital stay I actually threw a resident out of my room and demanded he never come near me ever again. It worked. Also, I think any decent doctor would see no harm in you seeking other consulations.

Also, it is my experience that it is NOT an ostomy nurses job to care for things like you describe. Their job seems to solely revolve around getting appliances to work, taking care of minor skin problems, and referring you to dermatologists or surgeons with anything beyond that. When I had tubes put in my first stoma, it was my surgeon and surgeon's fellow who cared for me.

With that said, I do think that it seems you should try to eat the food that your surgeon lady tells you, even if it is real food. I also think some kind of distraction would be helpful for you. Somehow/someway I think it would be good if you could just completely ignore what comes out and when. UNLESS you end up in severe pain and are vomiting(aka a blockage). I do think it is important to do the cathetering as they told you the 3x/day as they told you. It seems to me they are trying to keep things open until the swelling from the last surgery subsides.

I know you have been through so so very much. But if you can try to focus on just what is at hand at that particular moment of the day, it may help you get some strength to keep fighting through this. Looking back, or forward... really can't do much to help your physical healing right now.
Wishing you the best.

Thx all. There is a lot to this. Am being shut down as I have recognized so many places prior. A friend said the best care is in south africa for surgery. They also have sprayshiled adhesion barrier.

See the thing is is I eat real food I do go into painas it blocks up at he stoma thwen I have to walk miles a swill grape juice.

The stoma swelling has receded so I wil try dilation right now very gently. Monday i and friends from hotel are going to go over and demand consult appt with a more experienced surgeon. Mine is "out of the country again". She lied on the op report and said I asked about having my colon oiut, that was a clue. Another of her patients was giben peritonitis and sent home with the signs. Later readmitted that night. I don't blame the stoma nurse fopr not wantint to judge on the dilator issue. She should not have to.

Thanks sure. Some friends from hotel may be taking me to the ER am blown up like a balloon absolutely nothing passing. Food no way. The exit is blocked once again.

My doc skips my appts now, I asked for consult with anm older colorectal surgewon or at least a fellow. I was told NO!

My surgeon out of ****ry. I am in trouble maybe trip to ER is I order if they don't inflame stoma more with whatever they wil do.

Wishimg euthanasia existed.

My doc said do the grape juice. Not even a popsicle will come out I cannot do food. RJ

Rosemary:

The surgeons I have dealt with we're not world famous or nothing, but the three hat I have had over the last ten years all hared one thing.....they all really cared bout their patients. If you want to give one of them a try, let me know and I will let you know heir names. They are part of the Peninsula Surgical Specialists in Burlingme, California and are associated with Peninsula Hopital.

Post Edited (Bay Area Guy) : 12/2/2012 5:22:11 PM (GMT-7)

Rosemary, thinking of you. Hang in.

Hopefully the info is in your email inbox now. Best wishes.

rosemary, if things are so bad that you are not able to eat at all and vomiting.. you should go to the emergency room. They will do blood work there to check your nutrition status and also get you out of pain.. regardless of where your doctor is or not. Sometimes going to the emergency room will raise the attention that you may need.

If things aren't that bad, it seems like maybe they do have a plan, by sizing down on the tube. It may just take time for the swelling to go down as you have had so many surgeries and poking and proding.

Sunee,

I did ask for the patient advocate dept. They said they do not have one. They said they have care management who would then refer me to the colorectal dept.

I did hire my own social worker who got me a social worker at the hospital who is going to put in for nutritional stuff and for someone for me to talk to. On my own i am working hard to make multiple other contacts to other stoma revision docs. They are reviewing my records. They ALL strongly advocate some sort of a wait time. My doc here is no seeing me til the 19th tho she is "back in the country"
There must be some issue i think that wait time is to give immune responses a chance to heal from surgery in general and also god forbid if i had to have more open surgery for adhesions to soften over time. The outter ones do so i assume the inner ones do too. However you are right. Even my social worker i hired said "-have never seen anything like this."