This is not good!

I am soooooo hungry!!! Every time I eat real food, my stoma cannot pass anything and i Have to use prune juice to melt the poop down and get it out of my stoma, either that or it backs up and I go into pain.

I have NO CLUE why the ileoscopy appt cannot be moved up closer in time than May 22nd. I am losing a LOT of weight. My nutritionist is making me liquified chicken breasts but jeeze. So tired. I just hope I make it. A person HAS to have nutrition. The second opinion surgeon did say he wants to help if he finds something he can fix depending on what shows in the ileoscopy procedure, but it is sooo long away. 3 more weeks. Tomorrow I am just going to HAVE to eat normal food as I am simply too hungry. I figure if I have to melt it all down with prune juice anyway, I may as well eat, but this is hard.


THis is very much like when my rectum was strictured in after the 2006 sigmoid resection at the other hospital and I had small bowel obstructions from adhesions on small bowel and I had to wait 13 months to get the stoma and the adhesion take down. I got sooo weak and hungry. WIth stool i had to actually take a half gallon of bowel prep once per week to melt stool down and get it through my very narrowed rectum. Isn't this being put through the same thing all over again with the what seems to be stenosed stoma?

Deja Vu all over again. Too much to handle. If I was another person this issue would have been taken care of by now. None of my friends can understand why this is being left for so long. By the time I have the ileoscopy it will be 2 and a half months. That is unheard of. Rosemary

I tried calls, faxes, letters to get the appt moved up. No response. I asked my PCP and she said she could not do more than I am doing. I said if ER needed again then she would get another call from the ER doc to speak up for me. She said the ER would be the place to go if this becomes emergent. This is a nightmare being left with this. This is unreal.

Allblue, where do you go again for help? I cannot last 3 weeks like this. I just won't make it. Rosemary

You poor thing! This is terrible that you have to wait that long. I agree with kazygirl....go to the ER and thAt way your surgeon will have to see you. You just can't live on liquids for 21 more days....crazy! I hope you get some help very soon.

Did the ER a few Sat's back. The ER doc made my PCP call for second surgical consult appt to be moved up a month and she did it.

I have since communicated with her via email about putting in a call for the ileoscopy test to be moved up a month from May 22 to much sooner. She emailed back that I am doing all she would do in my faxes, calls and emails to the second surgical consult.

BUT that is NOT true. I had tried myself multiple times to move the second surgical consult up to no avail. ONE call from the PCP and bingo, a spot opened in the surgical consult's schedule the very next day.

If I went to the ER, the doc there would just put in a call to the PCP along with my request to move up the ileoscopy test THEN she would act on it. Issue is I have no energy to go to the ER. Being not able to eat I just need to crawl back to bed. My nutritionist is coming at one to make me more drinkable chicken, maybe she can put in a call for me to get the ileoscopy moved up.

Course if I get nauseaus or anything I would be at our ER in a minute. If this whole thing is found NOT to be stomal stenosis after the ileoscopy, then I have no clue what I will do. it will be written off as "functional" with no recommendation. BUT for now I have to believe that something will be found in the ileoscopy that can be fixed! HOPE SO!

I just have to also TRY and let go of the fact that the original surgery which necessitated the ostomy in the first place was found to be unneeded on review of the first surgery (sigmoid resection), so I need not even have gone down this road. This is such a nightmare.

ER is good idea. I may even just do it tomorrow if PCP does not call for second surgical consult. The issue with a wait of this long without being able to eat (since March11 due to stomal failure) is that you get weak then soon lose the ability to advocate for yourself as forcefully as you could. Maybe this is what they are counting on? Who knows what is in the minds of some medical people? The second consult and the GI seemed very in my corner, though, but at this point I don't even know anymore.

Rosemary

Post Edited (esoR) : 5/2/2012 10:13:59 AM (GMT-6)

At the risk of sounding like a lush, may I suggest red wine.  I'm 72 years old.  I've had my ileostomy since October of 06 and I drink 2 six ounce glasses of red wine every night.

Keeps me happy and super regular.

If Ihave just drunk something and lie on my left side nothing comes out of stoma and I get this bad pain between navel and stoma. If I lie on my right (the stoma side) then if I have only liquid in me it will come out and the pain goes away.

If I am standing or sitting and have had something to drink I have the pain.

Does this sound like a peristomal hernia to any of you?

it is so positional. no hernia shows on any CT scan nor by feel per any docs, but I know what is happening to me. I can see it and feel it. Rosemary

Thx I will check it out. Rj

Good news. I finally got my PCP to agree to call and see if my ileoscopy can be moved up. I left a message with her practice in addition to going through email to her. I told her I was unable to eat much, losing weight, and getting weak. I guess those are the key buzz words. Rather than My stoma isn't able to push out poop. So we shall see.

I am also going to see a naturopathic doc to have small bowel bacterial overgrowth breath test. I may have some type of infection type thing going on with some bacteria. Likely by now.

Then I did see this article that says there can be many types of peristomal hernias not just the type that stick out that I don't have. Bowel can get trapped many places in many layers of muslce. So I will ask about this.

Today I drank liquified chicken and liquified salmon and all so far is OK. Not very chewy but...RJ

Nope no TPN no PICC just like before I am being left to starve. I have a nutritioninst who is liquifying chicken for me. So far no repsonses for sooner eval. I think if not the stoma stenosis I think I have a peristomal hernia. I have had heaviness for a long time in that area with obstuctive symptoms only presentin now. Not all these show up on CT scan. Am sending article to the surgeon I am supposed to get in with for the ileoscopy. Nobody is really hustling this along as needs to be done. WIll see if my PCP called on my behalf. Rosemary

What are ta-tas? Maybe I need new ones too?

ahem, breasts :) Seems that being sick for 9 years took it's toll on my girly goods.

Oh, I see. I will settle for the working ileostomy that would be good. Rosemary

Hi Ryan, I am pretty weak and sort of sleeping all the time. Under normal circumstances would love to meet you, but I'm in bed all the time now. My PCP did call Lahey to try and move up the appt for the ileoscopy then she said there is no more I can do. True I mean she is not a surgeon. BUT who the heck is ever just left with a stoma that has virtually stopped working? I don't get this at all. Nobody else would be left like this. Thanks for thinking of me. Rosemary