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XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/15/2009 3:49 PM (GMT -6)   
Hello All.....
 
I have been posting under TC for over a year and just recently was admitted with Small bowel obstruction 4/7 ( found after open laparotomy to be cuased from my rectal snismus) and 4/13 permanent loop ileostomy. I am still in hospital and have no action in bag or bowel, but just wanted you all to know and hope that in the future you can help me. I was not looking into the permanent ileostomy so I HAVE NO CLUE about anything except what my hospital ostomy nurse has told me. I have an open inscision and am still on PCA and had some breathing issue Day of syrgery and Day 1 post-op with 6 breaths/min and 4 doses of narcan. I am still in incredible pain and having horrible spasms.
 
I know nothing about appliances. I am 29 (almost) and my husband has been wonderful, but wht is best for a pretty active female. I love to work out, we have a pretty active sex life, and I love summer and love to swim/water sports. Am I going to be able to fo any these things. What food to stay away from? I have not eaten yet? How long before you went back to work? I am a nurse and my job is hard and I am planning on 12 weeks? I am afraid of accidents. I feel like this bag is way to big for my body. How long did the pain last? How long till you had action? Can you drink alocohol at all after and does it affect you? I jusy have so many questions I do not know where to start. I cannot have a reversal or take down d/t my anismus (rectum does not relax). Wee that all for now. My dilaudud us kicking in,
lizzie
Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Dx Anismus- Second opinion U oF M
Recommended at home biofeedback for 2 months, BUT before I could
Admitted with Small Bowel Obsruction April 4, 2009.
Suggested ileostomy April 12 with no resolution.
Loop ileostomy April 13, 2009 ans still in hospital recovering.
 
"The Greatest Healing Therapy is Friendship and Love"


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/15/2009 4:20 PM (GMT -6)   
Well sorry you are having such a horrible time of it!
 
Ok i was 29 when i got my bag too! 
I use the hollister newimage with the velcro closure and i reallly like it.  Its got a cloth cover and once you fold it up its not that big.  they have mini ones too but i just found that i had to empty too much and it didnt make that much of a difference.
 
You can do everything you did before, i promise!  you will have to wait a few weeks before working out for sure though.
Swimming is no problem.  I tape my bag up on itself and it doesnt show at all.  There are also these things called sureseals that go aroudn the flange to keep the cloth from gettign wet.

The bag you have on now is probably what the hospital gave you and its like clear and bulky, at least thats what most people start with.  But the stuff you can get for yourself is much better than that.
 
Food-After a few weeks you can eat whatever.  The first 6 weeks or so you stay on a low residue diet, just to get your stomach used to workign differently.   then after that you are fine, you may want to stay away from popcorn and nuts though.  And you will notice that some foods (like broccoli) can give you more gas, just take some gas-x before you eat them. 
 
You can still drink!  I didnt even start drinking until last summer and i dont know why i hadnt ben doign it for years, lol.  I dont know if the affects are any diff, since i didnt drink before i do know that i am a lightweight!!!  And also, be sure that you drink something else with it, like maybe have a soda or some water also, cause we dehyrdate easy and liquor dehyrdates you also.
 
I took pain pills for about 2 weeks, then after that i went with just advil,  but i had some pain for months (i'm not gonna lie about it!) but it was not a big deal, just more annoying than anything. 
I dont know what you mean by how long til you had action, so i cant answer that.
I was told to stay out of work for 6 weeks.  Just be sure you dont overdo it! 
You havent had any output yet?
Its gonna be bright green when it first comes out and its gonna smell to high heaven!!! That wont last though, once you start eating it will turn to a more normal poo color and the smell will calm down.  UNLESS they give you red jello or something, then it will turn bright red, lol. 
Anyway, ask all the questions you want, and hope you get to feeling better soon!

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 4/15/2009 8:28 PM (GMT -6)   
You may be a candidate for irrigation in which case you can wear a small bag or a stoma cap. Just take it day by day...you will get through this and feel better in the end!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/15/2009 8:42 PM (GMT -6)   
Summer pretty much covered a lot of your questions. I was 23 when I had my surgery - perm ileo. And it hasn't stopped me from doing anything that I want to do, with the exception of lifting heavy weights and that is just because I am trying to avoid any additional adhesions since I am really prone to getting them. I just don't want to ask for any trouble, ya know? So be careful about what you lift until you get the ok from your surgeon/GI. That may limit when you can go back to work since you are a nurse.

Please feel free to ask or re-ask any questions so we can help you thru all of this. Hopefully your intestine will "wake" up soon. Just a side effect of the anesthetic. Try to walk as much as you can. Even just getting out of the bed and sitting up in a chair, walking to the loo, walk the halls... you know the drill, right? It will be painful, but it will help wake up the guts and will help in your recovery. Sometimes sucking on hard candy, like butterscotch or lifesavers, helps with waking up things. That's my experience anyway.

Take care and let us know how you are doing...
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 4/16/2009 6:39 AM (GMT -6)   

lizzie the spasms are your bowel waking up it might appear.  i was given buscapan for that but your drs might not want you to have that. dont take morphine or could make spasms worse i was told.

 its awful i know - i felt like i was dying but made myself walk up and down the corrider for about 10 mins or 5 mins in your case as you are so weak - i am sure they are sending physiotherapists to you to see you now?  you cant be left alone to walk if you are weak and you havnet eaten for so long.  my main prob was the nausea and the air inside me not moving out very quickly.  it took a week to pass.  take care now and you will be ok.


Karen 47 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 JANUARY 2009: scheduled for T/C
12 FEBRUARY 2009 - Re-scheduled T/C- (postponed as the Professor is away)
10 MARCH 2009 - T/C HORRAY FOR A CANCELLATION!
Loop Ileostomy - Due for reversal around June 2009
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/16/2009 6:28 PM (GMT -6)   
Lizzie--life will go on and you'll be able to do everything you did before....and more!! I'm just gonna ditto summerstorm's post...I eat anything I want, drink (but stick to beer or I get a killer h/over), work out, ride horses...I could go on and on:)

I have recently gone back to the Convatec Durahesive 2 piece wafer...I was started on this brand many years ago...and thought I new better and tried something else...WRONG!! The Durahesive holds up really well to the 'liquid' output of an ileo and I get 5+ days wear time. As far as working, you may have to be careful with lifting...I can lift bales of hay without a problem, but I am careful with my 'core' and do try to strengthen it so I don't have problems.

12 weeks is a good time frame...I needed a full 12 to really feel like 'normal' again.

Glad you are resting:) Keep us posted!

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/17/2009 10:49 AM (GMT -6)   

Hello guys.....

Still in the hospital, but doing better. I am off my IV and its heplocked. My ileo started working last night...they had to put a catheter in it and it openened up. It has been 10 days and I thik I may be able to go home tomorrow if I can eat ok. The output is a lot right now. Is this normal? I feel I have to empty it every hour? I am not sure what brand, but they ordered me some two piece 6'' ad 9'' bags,some with clips and some with roll and lock? I am on vicodin, motrin, and neurontin right now and have bene moving around pretty good.

Just some questions. I have been very emotional and crying, esp since I changed it on my own (which was not that bad being a nurse and all).

Is it normal to feel sad like I do and to not feel so sure about what you have on your body?

What happens if someone runs into it and bumps it? Can this hurt it?

When does the output slow down and its making loys of noise does this slow down or go away as well?

Having an ileo it does not small that bad, but it still does. They have told me to use mouth strips? Has anyone ussed this before?

Can you wear yournormal clothes? I think it pouches a little. DO youall where something (esp girls) under your shirt t o hold it down like a body tannk or something?

I know you said you can drink....does it affect you differently?

Just some of my questions. I will have more. Going to try and eat lunch.

Lizzie


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Dx Anismus- Second opinion U oF M
Recommended at home biofeedback for 2 months, BUT before I could
Admitted with Small Bowel Obsruction April 4, 2009.
Suggested ileostomy April 12 with no resolution.
Loop ileostomy April 13, 2009 ans still in hospital recovering.
 
"The Greatest Healing Therapy is Friendship and Love"


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/17/2009 3:36 PM (GMT -6)   
The output will slow in the nexxt couple of weeks so will the gas and noises. If you let youself get hungry before you eat you will get more noises and gas though.

i like the lock adn roll better it seems safer to me than the clip, those scared me!

Totally normal to be all over the place emotionally! its partly teh pain meds when you get off those you will feel better. But losing a body part is a big deal, and alot of peopel go through the stages of grief when that happens. so just give yoruself some time to come to terms with it!

If someone were to slam straight into your stomach with their knee or elbow or somethign it might hurt it, but i have had my stomach run into plenty of times (three little boys runnign around andjumping on you i get a lot of damage!) and i have run into walls and tables and all types of things, i am horribly clumsy, lol.
It may bleed some if you hit it on somethign though, dont freak out if it does, stomas bleed really easily.


It smells worse now than its going to later. the smell will calm down as you eat more. And the smell will depend on what you eat also. Like, peachces and cream come out smelling like peaches and cream, lol. But pizza and ranch dressing smell like death warmed over, lol. I havent heard of mouth strips, but some people use mouth wash. And there are deodorizer drops you can buy!

You can wear your normal clothes, noone will see it, i promise! YOU will see it though, lol or think you see it rather. But noone else can, youd be amazed what you can do without anyone knowing.


I drink, but i dont know if it affects me diff cause i just started. I think i said this already, but just be sure you drink alot of water or something else cause you will dehydrate mfaster and that makes for a horrible hangover!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/18/2009 3:23 AM (GMT -6)   
Lizzie,

My ileo took 10 days to work, too, and I didn't want it at first either, so I understand what you are going through. (((hugs)))

It is completely normal to empty every hour in the very beginning. It will not be so active and noisy once you get through this initial period. Also, the consistency will thicken as you eat more solid food.

Please make sure you're drinking plenty of fluids or get back on IV fluids, because they took me off the IV fluids too soon, and I ended up severely dehydrated after my ostomy started working. They should be closely monitoring your fluids in and fluids out to stay on top of this.

It is very normal to feel sad at first. You just had surgery and have a lot of different medicines in your system, so they will make you feel strange, as well. If you're a normally happy person, you will feel happy again. wink
Just try to take it one day at a time.

The stoma is pretty tough, so you don't have to worry about injuring it. There are stoma guards, if you find that down the road it is a concern, being a nurse and all.

I put mouthwash in my pouch as a deodorizer. I've never tried mouth strips, but it seems to me they would work, too. There are also ostomy deodorizers and hydrogen peroxide works well, too.

I wear normal clothes. In the beginning, there is more output and gas than normal, so this is not how it's going to be. Babydoll tops and any kind of untucked shirts are great at hiding the pouch. Sometimes I'll wear high waisted underwear, so it covers and flattens the entire pouch.

Yes, you'll be able to drink alcohol again, but you'll want to drink water with it, too, so you don't get dehydrated.

I hope this helps, and please know that we are here for you! smurf
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/18/2009 6:28 AM (GMT -6)   

Thanks for you replies....its so n ice to hear the way I am feeling is normal. I had a very hard emotional day yesterday and cried on the drop of a dime. I am still on some pain meds (vicodin, neurontin) so I am sure they are not helping me get back to my true normal happy self.

I think I will do better when I cant see the output. Right now I have a see-through 9 '' bag on that drops to my leg. I am a small, petite person, and so they have ordered me a mini bag to try out. I am hoping the opaque bag helps me with no constantly looking at it and cringing in disgusts. As for many of you who went all to often, I never went so it is wonderful to see something come out of me and I am SO happy this will giv eme my life back, its was just so sudden, and I did not have time to fully research it and know what to expect. although.....I am not sure I could have ever been prepared.

The brand they have on me is hollister? Is this good? I have a two piece and I do not know the name of it. I just changed it for myself yesterday. I measure 1 3/8 right now? Is that big? and they said it will shrink....it was 1 1/2 and still appears swollen. I puut a ring thing that is kinda sticky around the stoma and then apply the wafer. Does this all sound good and normal?

THey think I will go home today, but I had SO much output yesterday they are concerned I would be back in a day if it kepy up this way with dehydration. So I have to wait it out to see if I have less output and I can drink better. I feel a little weak today and definately sore. I have been here for 11 days now, but in reality I am only Day 5 post-op. Thanks again for you replies. It helps during this scary time.

Lizzie


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Dx Anismus- Second opinion U oF M
Recommended at home biofeedback for 2 months, BUT before I could
Admitted with Small Bowel Obsruction April 4, 2009.
Suggested ileostomy April 12 with no resolution.
Loop ileostomy April 13, 2009 ans still in hospital recovering.
 
"The Greatest Healing Therapy is Friendship and Love"


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/18/2009 6:56 AM (GMT -6)   
Oh, yeah, those clear pouches are the absolute worst!!! The opaque ones are so much better. They have a flesh colored cloth covering, and you can find a smaller size pouch that works for your body type.

Hollister is a good brand, and so are ConvaTec and Coloplast. There are lots of different products to choose from!

I have an ileostomy, and my stoma is 1-3/8", so that is normal. The sticky ring thing that goes around your stoma is called an Eakin Seal. That keeps the output from leaking under the wafer and onto your skin.

The next time you change your wafer, I highly recommend using an adhesive remover wipe to remove it. The nurses can give you a whole stack of them. It's also a good idea to shave the little hairs on your belly where the wafer goes, so it doesn't hurt the next time you take it off.

I understand about dehydration. Keep drinking, so you can go home soon! You're doing great!! :-)
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/18/2009 1:39 PM (GMT -6)   
hey sweetest Liz, well i don't have answers to these questions, but just wanted to check in to give you a
(((((BIG HUG)))))

love ya, hun, and hope you get better every minute!!


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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/18/2009 8:44 PM (GMT -6)   
something to know about drinking, and this may not happen to everyone, but about 5 or 6 hours after i stop drinking, i get the worst gas and gurgling! Usually about 8 or 9 in the morning, and its so annoying, lol.

All the stuff you are doing so far sounds good! I cut mine right at the first circle on the wafer, no idea what the size is, lol. But when i came home from the hosptial i was cutting it at the second circle, so it shrinks alot!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/19/2009 6:12 AM (GMT -6)   
Hey Lizzie,

Just wanted to check in and see how you're doing this morning. I hope you're doing well, so you can go home soon! :-)
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 4/20/2009 4:14 AM (GMT -6)   

hey lizzie!!

hows it going - so glad you are getting output and on the way forward.. i was an emotional wreck in hospital - but you have even more reason to be emotional after all your trials.  i would cry at watching dancing on ice when someone danced really amazingly....!!lol.  Just be patient.

I was totally grossed-out by the smell and look and couldnt contain myself with that - but it took a good couple of weeks for it to change - it depends on your appetite.  if you eat lots of white carbs, crisps and jelly sweets it will thicken up eventually. it is hard to eat after surgery. 

i am using Coloplast Sensura one piece - it is fine - no leaks or anything, only when i didnt clean my skin properly once which was my fault.  My nurse gave me lots of booklets and stuff to read - didnt you get anything like that yet?  it really helps to have info at your fingertips.  My only problem is itching and soreness - i think i have sensitive skin.  also around the stoma is still sore as it is rather flat now and it is tiny just under 1/2 inch.  it shouldnt be changing anymore as i am 6 weeks post-op tomorrow. 

i have started to use either paste or the rings like you are using.  i use the Hollister rings and cut them in half and mould them around the stoma hole.  isnt it a a chore Lizzie???  its like changing time for a baby except more difficult.  especially when it starts to work when changing it.  make sure you choose a time well after or before eating. i also use powder around the stoma and i am just getting used to changing the bag after all this time - it takes a lot of practise and getting confident. 


Karen 47 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 JANUARY 2009: scheduled for T/C
12 FEBRUARY 2009 - Re-scheduled T/C- (postponed as the Professor is away)
10 MARCH 2009 - T/C HORRAY FOR A CANCELLATION!
Loop Ileostomy - Due for reversal around June 2009
 


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/20/2009 8:02 AM (GMT -6)   

Hi you guys...

Not doing so well. Got out of the hoiptal late Sat. I have been crying ever since and having paince attacks and withdraws from the narcotics. I cannot stand looking at this bag and I want it off of me. I was doing fine and then I came crashing down. I have not stopped crying in over 36 hours. I have at at home nirse coming today. They called me in some zofran to help with my newly etreme nausea. I was hardly able to eat anything yesterday.

There are atimes I wish I could go back to my life of constipation, but then i know how miserable I was. My family and husband have been doing everthing they can, but I cannot snap out of it. I am a week post-op today. My hisband is afraid I might tryi and hurt myself, but I wouldn't. Anyways ....just checking in.

Lizzie


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Dx Anismus- Second opinion U oF M
Recommended at home biofeedback for 2 months, BUT before I could
Admitted with Small Bowel Obsruction April 4, 2009.
Suggested ileostomy April 12 with no resolution.
Loop ileostomy April 13, 2009 ans still in hospital recovering.
 
"The Greatest Healing Therapy is Friendship and Love"


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 4/20/2009 8:51 AM (GMT -6)   

oh babe i am sorry - its been a short time since this op so it will take time.  its important you rest and not worry about anything.  the tablets for nausea will help - i had big issues with nausea because of the anaesthetic - it took well over a week to get over the nausea, but it will get better. just take eating very slow and eat what you really feel like eating even if it isnt nutritious. 

its hard i know but you will start to feel better, even though you hate the bag - once things settle you will be ok and find a new lease of life i am sure. xx


Karen 47 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 JANUARY 2009: scheduled for T/C
12 FEBRUARY 2009 - Re-scheduled T/C- (postponed as the Professor is away)
10 MARCH 2009 - T/C HORRAY FOR A CANCELLATION!
Loop Ileostomy - Due for reversal around June 2009
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/20/2009 9:01 AM (GMT -6)   
Lizzie-
I had the same thing happen to me- I had bad anxiety starting right when I came home from the hospital. I have a history of this. but haven't had anxiety/panic attacks in years. I think it was the combo of coming of narcotics/ the surgery etc...

I called my GP and got Xanax and within 3 days was feeling much better. I took Xanax .25 three times a day for about a week and then I was fine.

Your body has gone through a lot---- surgery can do a real number on your emotions.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/20/2009 9:18 AM (GMT -6)   
lizzie
its normal to be freaked out at first and come crash down, as you put it. the first time i took a shower and saw myself naked i bawled for hours! And the first couple of times we changed the bag at my house i thought i would just die of disgust!
But it gets better with time, it reallly starts to get better when you start to feel better and realize the bag that you are hating right now is what is making you feel better!
Coming off pain pills is hard, cause you can get serious withdrawal and it messes you up.
Hopefully, once you get over the withdrawal and get to feeling a little better physically you will start to feel better mentally.
I second the suggestion to get some xanax or valium or somethign to get through the rough emotional time. The day i got out of the shower and was crying, i took a phenogren just so i could go to sleep and forget about it for a while!
Hope you feel better soon, and anytime you feel bad make a post and someone will try to cheer you up!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/20/2009 7:28 PM (GMT -6)   

Lizzie,

I am so sorry you are having a rough time with your new situation.  Please don't feel alone in all of this and with your emotions.  I would bet you the majority of us have gone thru some of these very same feelings during our first few days at home.  It is natural... like a grieving process on top of anesthetic and paid med withdrawals.   Your body has been through more than you can imagine in a very short time.  It is coming to terms with its new plumbing as well.  ALL of this can affect your brain chemicals as well, and in turn affect your emotions.  Please post on this site and let us know how you are feeling.  We've been there, we know, and we can try to help you, if you let us. 

Xanax is probably not a bad idea.  Are you still taking any pain meds?  Are you in any pain? 

I know eating is probably the farthest thing from your mind since you are nauseous.  But do try to drink as much as you can.  Maybe just a few bites of pretzels or saltines with something to drink, several times an hour to start.  Keeping a few bights down like this will help with the nausea too.  All of those digestive juices are really back into action - everything has woken up!

Take care of yourself, take a few deep breaths, and read the post on here about what all we have accomplished post ileostomy...  it really will happen to you as well, in time.  You just need to give it some time... one day at a time.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/21/2009 5:02 AM (GMT -6)   
hang in there...It does get better and we are here for you!

like Peggy said maybe just a few bites of something like crackers to keep the nausea at bay.

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/21/2009 10:11 AM (GMT -6)   

HI all......

So I am back in the hospital. I have an abscess. Right now I only have one, but I have another CT before I go back down to interventional radiology. I got my new bad, its opaque and much smaller. It fills quicker with these fluids and I am sure one I start eating, but I have not had terrible amount of out of my stoma. Is this normal. I have no appetite....only cherrios and some powerade zero. I am down to about 108. Right now I am NPO again for sedation for interventional radiology.

I feel a little better than I did about the bag, but I am still looking into Cleveland Clinic and a consulation soon. I see my surgeon May 15 for my three wk check-up.

Just checking in. I went to my pcp yesterday and they started me on celexa and 1 mg ativan three times a day.......i feel like a druggy.

lizzie


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Dx Anismus- Second opinion U oF M
Recommended at home biofeedback for 2 months, BUT before I could
Admitted with Small Bowel Obsruction April 4, 2009.
Suggested ileostomy April 12 with no resolution.
Loop ileostomy April 13, 2009 and still recovering.
Hoping for consulation to Cleveland Clinic for K-pouch.
 
"The Greatest Healing Therapy is Friendship and Love"


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/21/2009 10:41 AM (GMT -6)   
I'm so sorry to hear that you are back in the hospital, but that's where you need to be to take care of your abcesses.  I am also glad you are taking Celexa and Ativan.  In time you will be able to cut back on the ativan probably.  Celexa has worked well for a lot of people.  I am familiar with it.
 
Please keep us informed how things are going for you...  we are thinking of you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/21/2009 6:16 PM (GMT -6)   
Lizzie--

Just wanted to you know we are here for you...You are in the best place to have that taken care of...

I am still a fan of the Cleveland Clinic and would be happy to answer any questions you might have:)

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/21/2009 8:08 PM (GMT -6)   

So they drained a bunch of stuff (nasty stuff) from my abscess, but I am still in a lot of pain and short of breath. They did a cXR and there was no clot. I have had no fever, but have been on Zosyn since ER last night. I am still on just sips of clears, nothing sounds or looks good. They have talked TPN a little....since I have only been on reg diet 3 days since 4/7. We will see though....they may advance tomorrow.

OHIO- I am very interedted in the Cleveland Clinic. I am interested in a consultation to see if there is any chance of reversing my bag since it was of emergent nature. I have never been there and it is out of network for me....I am scared and lonely and sad. They have me so drugged up its hard to cry, but at least I did not want to pull my stoma out today. I have never been this low in my life. I called Dr. Remzi's office today (he performs k-pouchs) and also I just want his opinion. I feel bad b/c my surgeon has been wonderful......I do not want him to feel inadequate, its just some do more than others.

Anyways, the ativan is kicking in.

lizzie


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Dx Anismus- Second opinion U oF M
Recommended at home biofeedback for 2 months, BUT before I could
Admitted with Small Bowel Obsruction April 4, 2009.
Suggested ileostomy April 12 with no resolution.
Loop ileostomy April 13, 2009 and still recovering.
Right abdominal abscess and hospitlilization April 21
Hoping for consulation to Cleveland Clinic for K-pouch and U of M for re-evaluation.
 
"The Greatest Healing Therapy is Friendship and Love"

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