Not doing well

Still no word about the ct scan. I could scream. But I did start passing the contrast matierial out of my stoma at 10pm or so. I am not 100% it is contrast because it is not white like it was when it came out of my bowel, but it was a creamy, thicker greenish brown output, not the green liquid that it has been. I also finally started passing some loud gas out of the stoma???? Is this an ileus? I dunno!

I am exhausted and I wish I would just sleep for 8 hours straight. Even typing this, I just want to close my eyes, but I will then only doze off and on.

My body is tired of laying in the bed, but I have been too sick to even walk around the past 2 days. Nausea rules my mood....I am not good for anything when nauseas, plus I feel nervous to leave the safety of my room and my puke bucket. LOL

My body feels raw in private places. OUCH! I think I need to ask the doctor for some medicine, but not sure which one??? Not getting submerged in water for baths is the pits. I feel nasty. I still have a drain and an IV, so no shower for me and this has been 11 days. YUCK

I feel okay this morning and am soooo happy to hear the rip roaring farts coming from my side. ****, but these days seem to all be the seem. I do well, then terrible, then well, then terrible. I am not trusting how I feel right now because I can take a turn for the worse any minute. Rosemary, is that how you felt with an ileus? I have been on NPO for 2 days again also, so other than the contrast, I have had nothing to drink or eat. This means that they will try to advance my diet again and I am terrified to drink or eat anything.   

Has there been any word on tickledpink since her surgery? Just wondering how she is doing. Tracy

Tracy,

YES loud farts a GOOOOD thing. Ask for a bed bath. They just wash you around all your tubes. Also for the private part itching, have them do a peri bottle wash. You sit on the toilet and they or you pour water out of a squirt bottle on your privates. Keep doing it until you feel clean.

Yes, this is what I was like with my 3 week ileus, up one day, down the next. Maybe the CT scan showed no obstruction that is why they are not getting back to you and they know it's ileus but are neglecting to tell you.

SO, what you do is, from your room, YOU call the CT department and ask for your report. They send it up to you, you sign a release, and bingo you have your results. This is one of the tricks I learned in one of my hospital stays. During ONE of them that I will not go into, I actually called my Healthy Proxy person at home and had HIM call the nurses station. His occupation just happened to be an atty, and boy did I get action. That head nurse whipped around the corner so fast with my pain meds which were long over due, that she left skid marks.

Hope this is the beginning of good things for you. But, you have to get crafty to survive as a patient on the long term as you are. So use your cell phone with wreckless abandoned. Rosemary

Tracy,

Your doc is right on in doing these tests, but that retrograde (meaning in through the stoma) enema must have been really painful. DID it hurt at the stoma or make your guts feel really full inside of you? Did the gastrograffin come back out? If not it is water soluble unlike barium and will just absorb so no worries if it does not come out.

WHat he was doing was checking for a stricture (scarring and narrowing of the stoma as it comes through the abdomenal wall). The xrays were to check I think for small bowel obstruction further up.

If these are inconclusive, see if they have CT enterography. It is like a CT scan only with IV contrast, course you have to drink a lot of plain water to distend the small bowel which you may not be up to but, if you held down the contrast for the normal CT scan then this might be OK. What it does is the water you drink puffs up your small intestine then the IV contrast shows if the small bowel is all open. I had that done last fall when I felt bloated all the time even with stoma working fine. When the doc showed it to me we could see no narrowings and like a fountain of air coming out of the stoma. It was pretty cool. I did not know I was farting at the time as I was hearing nothing, but he showed me on the computer and it was like an air fountain. So CT enterography is really very telling. I think most places have these now in their radiology depts.

Anyway, keep me posted. I really feel for you. I did have the 3 week ileus up and down and up and down, 2 steps forward, one step back, but I had no stoma swelling and after the initial 24 hours I was pooping and putting out tons of effluent. Just that stupid pasta I ate on day 4 that set me back big time, and put me into the 3 week ileus, but your experience is new to me. PRaying for you all day. Let me know. Rosemary

If I go out I will put my blackberry on which will tell me you posted and I can access your post from wherever I am.

Tracy, Auuuugh! If they were thinking the same thing I was, it means I am on the right track in what I am thinking.

There are 2 types of things that can stricture or narrow the stoma. I will have to look them up to be sure I'm right, but I know where to find the info, and will look it up and get back to you.

To my recollection, one is at the facial (connective tissue) level and one is deeper down. As I remember the facia type narrowing can be fixed in a minor procedure under general anesthesia. But the other one takes re-doing of the whole stoma. A major deal. BUt NO panic now, as you do not even yet have the results back yet from this test.

That balloon sounds painful!!! Glad the Sitz bath is there with the nystatin. They suspect yeast that is why the nystatin for your privates. If they have not been giving you a sitz bath or washing your privates with a peri bottle from the start, that would account for your issues with your privates. I had peribaths from the start. Jeeze. Glad they are dealing now with that.

Be back soon. Rosemary P.S. Is your stoma staying a nice beefy red color? If so, it means the blood flow to it is fine.

Tracy,

After my outing I found the article. It is facia level or skin level stoma stricture. The skin level kind is the easy to fix. The facia level strictures are the big deal to fix ones. It was in an ostomy support group article on line but it was written by a doctor so one would have to figure it had validity. Any word yet on your test results?

Christine posted on your other thread as have others. We are all sending prayers.

I am resolving to lose some weight. Many have said that weight gain does not affect their stoma's but they cite gaining about 17 lbs or so; I've gained 39 lbs and I have to drink grape juice to swish everything out. I never used to have to do that. My weight gain is over the top. So tomorrow I gotta start moving more and eating less. That should do it.

Continuing to pray for you. Was hoping I would see that light on my blackberry flash indicating a posting from you with test results, but all that came in were those junk emails. Rosemary

FINALLY, my wonderful surgeon has blessed me with his presence. He said the ct scan yesterday was a total waste of time due to severely dilated bowel loops and this showed nothing but an ILEUS, which we all pretty much knew about anyway. This is a functional problem and we all with CI are notoroius for functional problems. ESPECIALLY ME. GRRR

He then said the gastrografin enema today also did not show exactly what is going on, but he assumes I have a stricture right at the stoma sight from where the plastic surgeon repaired the hernia and he thinks it was too tight and has narrowed in.

Tomorrow at some point he is going to put me so sleep and go in with a scope and look at the stoma. He said he will dilate any strictured areas and also take a better look around and see if there is anything more serious. Rosemary, he said he has seen no indication of scar adhesions which is GREAT news....Please pray that he does not see anytthing too serious tomorrow and that I can get my stoma dilated and go home sometime early next week.

If my guts would wake up and the swelling would go down, then maybe this issue would be easier to diagnose.

OMG, she is already going home? That lucky woman, Tickledpink. I wish my intestines would wake up alot quicker.

Tracy, I feel for you!  I hope everything works out for you!  I am still having a lot issues at the moment, too; and I don't get it!  I hope we can both get better!

Tracy, I sure hope that dilation works for you. My dilations of my strictured sigmoid resection anastomosis made it stay open but it could not pump poop along due to scarring within the colon walls. Sure hope that stoma strictures are open and working once dilated. I hope so. I just got a letter that Soc. Sec. now they may cancel my monthly benefits and my ins. All because I told my stoma doc I went on a cruise. Man! I emailed my atty to ask for help..hope I hear back. PRaying for you girl. Rosemary

Tracy,

How is it going with the dilated stoma? Better I hope. Rosemary

So, my doctor advanced my diet and I ate 2 crackers and a bite of white bread. I was totally full after that. Well, i can hear gas rolling aroind in my belly, but it is not coming out of my stoma like it was, nor is the output. I undersstand I did not eat alot and this could probably be normal, but shouldn't I see some new output in the bag from eating 2 crackers, a bite of bread, and some coke and ice chips? I am so worried and am really looking forward to going home tomorrow.

Tracy, poor girl, i never imagined things will get so complicated.. :( i'm keeping you in my prayers for everything to resolve already and to finally work out! sending a huge ((((HUG)))) your way!