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2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 1/5/2009 1:42 PM (GMT -6)   
Last night I could not sleep because I was in too much pain. I kept waking up and asking the nurses for more pain meds. Then this morning I noticed my stomach is hard and swollen and I have no idea why; the nurses don't know why either.  My surgeon, Dr. Williams, just came in on rounds and ordered a CT scan and also discontinued my liquids. I'm really nervous about this CT scan.  about two or three days ago they took one of my drains out (the one that was draining the abscesses) and it seems like it has been since then that my stomach has been getting bigger and harder little by little every day.  I'm so worried I'll have to go back to surgery!  Also, I've had four bowel movements today and usually I have just one every morning.  I don't know what is going on.  I just needed to get on here and share my stress and anxiety with you.
 
They should be coming to get me soon for the CT scan and Dr. Williams said she will be back this afternoon with the results.  At least I'll know today what the problem is, if there is one, and I won't have to wait. Sometimes the waiting is the hardest part.
 
Anyway, thanks for letting me share.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Take Down Surgery Scheduled - December 15, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 1/5/2009 2:20 PM (GMT -6)   

I am praying for you and hope the CT shows no change. I was scared to death when I got both of my drains removed...I thought for sure everything would just come back. I hope that you have the results and do not need to go in for more surgery. You have been through so much. Constantly praying.

Lizzie


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 1/5/2009 2:50 PM (GMT -6)   
oh, Amanda, looks like things are not so simple. i'm sooooooo anxious to know what the ct scan shows. i hope everything gets figured out and nothing too serious.
please keep us posted as soon as you can.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 1/5/2009 3:30 PM (GMT -6)   
I just had the CT scan and it was awful! They did it with rectal contrast and IV contrast at the same time. Has anyone ever had rectal contrast? I've had it before and it wasn't that bad, but this time I think the lady put too much in and it hurt so bad I thought my stomach was literally going to burst open. I'm back in my hospital bed now and I had to ask for a bolus.

Now it's a waiting game. I have to wait for the doctor to get the results of the CT and and then wait for her to come tell me what's going on. I'm so nervous she's going to find something bad...
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Take Down Surgery Scheduled - December 15, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 1/5/2009 4:14 PM (GMT -6)   
now please don't be so negative, Amanda, not just yet. it could be it's a lot less serious than you think. hopefully, it's something they can handle.
i'm so sorry the scan was so painful. at least it is over now.
tell us as soon as you know something.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 1/5/2009 6:47 PM (GMT -6)   
2 ris k,
I hope everything ends up going well. You said you had a few bm's this morning, so that is good that things are moving. I hope the results from the other test end up okay. the best thing is too think postive and hopefully it is just a small thing that will not even interfere with anything and you will be in full recovery soon, without a bag. after having my surgery, I had a ton of bumps in the road with excessive diareah to alot of weight loss and numerous food intolerences and constantly getting sick due to my immune system being compromised. These things that happened to me would not necessary happen to you or anyone else, but we all have had our bumps in the road after our surgeries, and now I am okay and recovering well. I admit it took me a while to fiugure out the kinks about what foods I can have and I finally eased up my weight loss to now where I have been at 105 for the past 2 months in a row and now I have been even doing alot more activities now too. You can do it. You will overcome these obstacles and I hope you will get better fast enough to go home without having anymore surgeries. I still pray for you everyday and i am so glad that you are updating us with everything because we love to hear how well you are doing. I wish you good luck with everything and I hope everything turns out okay. I am glad to be hearing from you.

Maya

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 1/5/2009 9:03 PM (GMT -6)   

Thank you all for the prayers and the get well wishes.  My nurse came in with the results of the CT scan and she read it to me.  It sounded good, but even she didn't completely understand what it said.  She has paged my doctor and we are waiting for her to call back.  I don't know if the doctor will call back tonight or tomorrow morning, but either way I should have my answer soon.

That's the latest update, keep praying!  Thank you so much for your support!!

Love to you all!

 


Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Take Down Surgery Scheduled - December 15, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/5/2009 9:44 PM (GMT -6)   
they have done some contrast dye up my daughters rectum. It just helps them see the lower half of the intestines a little better. Hope this helps, and hope YOU are feeling better.
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/6/2009 3:51 AM (GMT -6)   
Amanda,

I sure hope that everything turns out ok for you. I will keep you in my thoughts. Please be sure to keep us updated on the drs. report. Try not to stress out too much - you know, that only makes things worse. I know it is easier said than done tho. Hang in there ..... think positive. Can we just hope that it is GAS!!!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 1/6/2009 10:23 AM (GMT -6)   
Thank you Amy and Peggy for your words of encouragement. They help a lot!

Dr. Williams came in this morning and said that according to the CT scan, none of the contrast went where it wasn't supposed to so that is really good news! I didn't quite understand everything she said other than that the results were good. She put me back on the liquid diet of juices, jello and broth for the next 24 hours and then she's going to advance my diet again and see what happens. That means by this time tomorrow I could be eating real food!! She's also going to order another CT scan for tomorrow, but this time they are going to inject contrast directly into my drain and see where it goes.

It all sounds so positive to me (except the next CT scan), but maybe I'm being overly optimistic. LOL, it seems I'm always too far one way or the other. Either life is great or the world is coming to an end. Ha ha!
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Take Down Surgery Scheduled - December 15, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Roddiesgirl
Regular Member


Date Joined Oct 2008
Total Posts : 262
   Posted 1/6/2009 11:12 AM (GMT -6)   
Hey girl!...congrats on the good news so far!!  Real food?? lol..I sure hope so!!  Hang in there and keep us updated!!..Cheryl

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 1/6/2009 1:12 PM (GMT -6)   
Amanda, i'm so thrilled to hear things are looking good so far. i'm still praying and hoping it goes on in this same direction!!!
you are really going to enjoy eating some real food, that's for sure.
think positive thoughts, o.k?
bon appetit! (i'm sure you have that)


Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 1/6/2009 1:21 PM (GMT -6)   
2 ris k,
That is great that everything is going well for you. Now you will be able to eat real food and then home sweet home. I am so happy and proud of you. i am so glad to hear everything is going well. I hope everything else is well and good luck with everything.

Maya

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 1/6/2009 5:16 PM (GMT -6)   

Amanda...praying for good results. I too had the contrast in my drain (s)....they called mine an abscessogram. I think i probably had nearly six of them...and the retal contrast I had that four times when they could not find my leak....I hear ya when you say its awful...i threw up all of the CT tech!!!!! I felt like they had pushed the contrast right out my mouth!!! I will pray for continued healing, no fistulas, leaks, or increased abscess!!! I FEEL UR PAIN!!!

lizzie


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/6/2009 5:48 PM (GMT -6)   
Amanda,

Any news today? Waiting to hear the update.....
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 1/6/2009 6:12 PM (GMT -6)   
Peggy, I posted today's update earlier today. Maybe you just missed it; it wasn't much...

Lizzie, it's so nice to have someone who understands my pain! The rectal contrast is awful!! They did the IV contrast at the same time and then took the pictures. So, there I am with contrast up my butt, trying not to let that out, then they put the other contrast in my IV and that makes you feel really warm and like you pee'd your pants even though you didn't. It was like a nightmare! Yeah I hope I don't have any more abscesses or leaks, but what is a fistula? I haven't had one of those yet (thank God!) and I hope I don't ever get one. Can you explain what it is?

Maya, Cheryl, and Hodaya, thank you again for your continued support and encouragement. Whenever I'm feeling down and out I log onto this website and I read the well wishes that people write and it makes me feel better, like people really care about me. Thank you so much.

I guess I do have a little update since this morning. I've had diahrea all day which is unusual for me, usually I go one time in the morning and that's all. Maybe it's because I'm eating a little bit more (jello and broth). But also my stomach has gotten bigger in the last couple of days and it is hard as well. No one seems to know why. It seems the harder and bigger it gets the more it hurts, I'm in a lot of pain. Even the CT scan didn't show anything so the doctor didn't seem very worried at this point. I'm going to talk to her about it again tomorrow morning when she comes in.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Take Down Surgery Scheduled - December 15, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/6/2009 6:46 PM (GMT -6)   
I hope you can find out what is going on and get home soon! When I had a CT scan after my surgery, it cause a lot of gas and was very painful. Are you passing any gas? Walking always seemed to relieve it for me.
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 1/6/2009 7:24 PM (GMT -6)   

Amanda....my fistula was a channel off my abscess pocket (one of them) that was long and winding and then connected to my bowel. It was life an internal channel that would not heal. Even when the abscess pockets healed that would not. It took nearly 45 days of drains and barely eating, I was getting scans and absessograns almost every couple days.....they would know if you had one and thanks GOD you dont...you have had enough trouble my love.

Praying for continued healing. you are on a roll....I thik the light is coming...i cannot wait till your free of those drains...and all healed up. praying for you

lizzie


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/6/2009 9:58 PM (GMT -6)   
Hi Amanda,
How are you feeling today? I hope you are continuing to improve.  Thinking about you and wanted to say Hi,
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 1/6/2009 10:48 PM (GMT -6)   
Hi Amy, I am not feeling too well right now. I have a lot of pain in my stomach. I keep watching the clock because I get a bolus every 2 hours and at night starting at 10pm they put my pump on continuous until 6 am. That's the only time I get real relief since the day before yesterday. I think I'm going to talk to the Pain Management people who are managing my pain and let them know what's going on. I simply cannot take this anymore. I don't know why it is hurting so much and it has me worried.

Sometimes I feel like they don't believe me when I tell them how bad I hurt. Ever since the CT scan showed that the contrast didn't go anywhere it wasn't supposed to, they look at me with skepticism when I tell them how bad I hurt. It really makes me upset and I end up crying after they leave my room. The one guy said "You're already on a pain pump, what more do you want?" I don't know, he's the doctor, HE should be telling ME what I NEED. UGH! Sorry, I just get so frustrated. I almost hope the next CT scan shows something just so my pain is validated and THEY look stupid.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Take Down Surgery Scheduled - December 15, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 1/7/2009 12:29 AM (GMT -6)   
Amanda, sweety, i know and i hear ya girl, i know too well how drs. can be so insensitive and even insulting it's just brings me to tears too. one thing is for sure, you don't want any additional probs. just in order to prove them wrong.
look, i don't know much, but i really wish that all of this pain in your stomach is just lots of gass from the reversal surgery. i've read here before that this pain is really bad. maybe you can ask them if they think that the gass is causing the pain?
if it's just the gass (hopefully), then that really is no problem, right? cause that will be resolved on it's own.

hoping to hear some good news from you.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 1/7/2009 5:54 AM (GMT -6)   
Sounds like gas lets hope so - that can be extremely painful when it is trapped - can you rub your tummy a little and lay on your side?

Karen 46 yrs
1997: Diagnosed IBS
2003: Pelvic floor repair surgery (rectocele/cystocele)
2006: STARR surgery for mucosal prolapse/Obstruction
2006: Diagnosed with slow transit constipation
2007: Sigmoid resection because of partial volvulus resulting in immediate colonic inertia
 
15 JAN 2009: scheduled for T/C
 


dangdonkey
Regular Member


Date Joined Jan 2009
Total Posts : 22
   Posted 1/7/2009 8:38 AM (GMT -6)   
Wishing you the best and praying for a speedy recovery.
Hang in there, and please try to stay positive, it's hard but you can do it!

Brian

amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/7/2009 8:45 AM (GMT -6)   
Wow Amanda, I am so sorry you are hurting so much. My daughter too is on a pain pump. They took her off the continious yesterday and has been pretty much miserable since. She too looks at the clock waiting. I think I have told you that I am a nurse as well, and I think it is important to keep telling them that you hurt. Try to be as specific as you can. CT scans and others are not a 100%...and sometimes the only thing doctors have to go on is the physical findings. I know you get sick of hearing the usual, walking, turning, deep breathing (Savannah does too) but they are important. Keep us posted, and I am praying for you to find some relief.
Take care,
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 1/7/2009 12:18 PM (GMT -6)   

How are you feeling this afternoon? Worried about your pain control. Why do they take your pump off during the day.....do they at least keep you with the option to bolus yourself. If they do, maybe you need to increase your limits or shorten the time in between available boluses. Are you on Morphine or Dilaudid? As a nurse this is very frustrating to hear becuase you are obviously in pain and been through so much. I never hesitate to give pt's more meds...they are in control of their care and I cannot know how they are feeling unless they tell me. Do not let the stupid dr's look at you like that...they have not been in your shoes and unfortuntately I have found working in the medical field that its hard to find a doctor that listens, cares, and has empathy you deserve as a pt. Not that there are not ones out there....but hang in there and be an advocate for yourself:) Thinking of you,

Lizzie

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