So, about 2 nights ago, I started having a sharp pain when I inhale that gets worse with hiccups, coughing, and laughing. If my bladder gets full, the hiccups start. Since being here, they've given me morphine and Zofran. The doctors believe the pain is coming from ureteral stents needing to be removed. I'm hoping this helps too, but in my body, I feel like this pain is directly related to the ileostomy. The pain is in my rib cage, on the same side as the ileostomy. It's just frustrating. When I got my ileostomy, it was due to endometriosis. I had a total hysterectomy, a mass removed from my bladder, and 4 inches of intestines removed. I just don't want them to miss or pacify a greater problem because that happened with the endometriosis and landed me here. I'm just a ball of nerves and tears today. Sorry to rant.
This is not a place to feel sorry about ranting. Sharing things with others who are likely to understand the problems can be very useful and cathartic. It also presents me with an opportunity to resurrect a rhyme or tow on the subject.
Best wishes
Bill
VENT A RANT.
I want to rant and scream and shout
and show my discontent.
I want to let the venom out
‘till all of it is spent.
So listen to me rant and rave
then you might understand.
The way you see me now behave
results from life’s crap-hand.
Sometimes I’m sick of all the shit,
the troubles and the strife.
I wish that I was rid of it
the pains and banes of life.
If my life was sweet and fair
I would not need to rant.
Because my life seems so unfair
I just need to decant.
Pour out my feelings one by one
and empty out my soul.
So anyone and everyone
can see in my hellhole.
It does me good to shout and scream
take’s strain from off my brain.
What better way to let off steam
it helps to ease the pain.
Life has been both cruel and mean
to leave me as I am.
So now I need to vent my spleen
as often as I can.
As I say, life has a way
of being most unkind.
A rant a day keeps life at bay
and lifts the troubled mind.
So let us all appreciate
the rant in all its glory.
For rants are so appropriate
to tell a bad, sad story.
B. Withers 2011
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Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
Oh my, I am so sorry. I hope that the root of your pain will be found and fixed. Don't worry about ranting on this site. Keep us updated.
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I'm so sorry you're in the hospital, Kara. Even though it's sometimes necessary, we all hate being there. Rant away on here, but also try to advocate for yourself. It can make you feel more in control, and it can get them to take other views seriously. If you have a very strong sense that this is ostomy-related, keep pushing that. You can even mention that you "just don't want anything overlooked." Hang in there.
How to Adjust to Life with an Ostomy with Bruce | Hollister
Rant all you like; it keeps the fire in you going!
Hope you get better soon.
I can understand your wanting to rant. It sounds like a difficult situation being made more difficult by them not listening to you. You should speak up to the doctor and explain that you know more about where the pain is located than they do. Make them listen to you. Keep on ranting if it helps.
Safe hugs.
Hello K
Be true to yourself and firmly establish with the doctors what you know specifically about your own condition and express openly - but with due respect, your fears..... Once you are able to establish a dialogue, I feel this will begin to aid your recovery and obviously will help your own tolerance - There is nothing so frustrating as when you may feel you are not being heard.
BW
~ ~ ~ ~ ~ ~ waves to Illinois ~ ~ ~ ~ ~
Jayne
That sounds hellacious, and I vigorously support you advocating for yourself and your treatment. If you have an advocate that can support you, that is even better. I was in for what the doctor said was outpatient surgery (redoing my midline surgery that fell open when they removed all the staples!), and the nurse said no, she needs to stay for at least a night. She was in shock before this surgery, and we need to make sure she's good to go home.
I'm so sorry. You have every right to rant.
While they may be right about the stents, it's a reasonable place to start. The stent on the ileostomy side may be the one hurting. If they are right, the pain should begin to get better very quickly when the stents are removed. Don't let them send you home if the pain isn't improving.
And always feel free to rant to us. Most of us have been in similar situations. We understand. I reserve the right to rant like crazy myself one day in the future.
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I feel for you! I hope they figure out what is wrong and get you out of there. Hospitals are not a fun place to be. In the meantime, feel free to rant! I've also found that you need to be a squeaky wheel and advocate for yourself. Be vocal about your frustrations.
Terry
I just wanted to add that you might want someone there with you, if possible, when you advocate for yourself, especially if you're exhausted, anxious, or in pain. It helps to have the extra support.
G-Day Karasmatic,
Keep pushing until something is done; if you don't, who will?
Regards, IGGIE
Thank you, it seems to be working—advocating for myself. I suppose an update is due here, lol.
We've discovered that the stents were infected. I'm currently on antibiotics via IV. The wound/ostomy nurse here is a godsend. She offered me great solutions, resources, and a goodie bag. Today, I have been having some runs of tachycardia. The pain is still there, so I will be having an MRI as well.
Infection in the stents is very serious. I'm glad they found that and got you on antibiotics. I hope the pain and tachycardia turn out to be related to the infection and not something else going wrong. At least they are looking more closely now.
I'm hoping you get better soon. Please let us know.
Thank you all… the tachycardia was my body responding to being dehydrated. The scans were great, and I am now home. It was scary, but I'm glad that part is over now.
One thing that may help explain this is that when those of us with ileostomies have these surgeries, there is a lot of work that goes on below the surface. You may very well be dealing with "referred pain," which is very common. What that means is that the issue is in one spot, but you feel it in another. It would be very normal to assume it had to involve the ileostomy, but it may not.