HAVING SUCH A ROUGH WEEK.....

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XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 6/1/2009 8:39 AM (GMT -6)   
Hello all....
 
Well I am seven weeks post-op today. I guess I thought by now I would be getting more used to the bag and this possible permanent way of life. I feel like somewhere along the line I have really lost me, my confidence and the person I am so known to be....even by my poor husband. I saw my surgeon a few weeks ago now and he is referring me to a psychologist becuase of my continued weight loss and just overall affect. I am willing to go.....and see what helps. I have been on Celexa since my second admission and I just have not seen any improvement. I have days where I feel good, but then something always sets me spiriling backwards. This time it was my visit to Cleveland Clinic last Tuesday. I saw Dr. Remzi, the colorectal surgeon who is highly recommended and it was a mixed emotion visit for me and my husband. Basically, he said "i am very reluctant to do a k-pouch on someone with your history for fear of complications" but also said that he wanted me back in six weeks for further testing. Test I have had, but just not in the more recent time for him. He is setting up a co-appointment with a pelvic floor specialist and him and after the testing they are to sit me down and tell me my options. He said I basically have 1-4 options, but he is not sure which is best for me at this time. 1- live with ileostomy 2- close my stoma and risk having another life threatning obstruction/physical therapy/laxatives 3- possible j-pouch and 4- k-pouch.
 
The strangest things have been happening in the last week. Now remember, I have never had UC or Chohns.....I just cannot go to the bathroom. He did a rectal exam which showed definately no ability to poop, but he is not sure why. I have been getting urges to go to the bathroom for over a week and I have not felt this sensation in over 8 years. I know its normal to pass some stuff and one day I passed stool....I have also not done this without laxatives in I cannot remember. I am not sure if these are all good things. They said having this lopp lieostomy would give my body rest and things could, but most likey would not start just working again. The problem is in my rectum somewhere at this point. They ar enot sure if it is my rectum itself or the sphincter muscles. If it is my sphincter muscles then the k-pouch would be my only option, but he is very hesitant to do it, but said he would. If it is my rectum and my muscles are working then I am a great candidate for the j-pouch....I think I have basically had the first two steps.
 
I am just in such emotional turmoil....I feel like becuase of how the whole ileostomy came about I will never be able to fine "me" again. I am still having horrible nausea issues seven weeks out and pain in my general stomach. This has increased since Friday when I think I overdid things and lifted stuff I should not have. I am supposed to go back to work next Monday and maybe this will help me. I am an oncology nurse and my pt's have always humbled me....right now my own selfishness is all that I can think about. I have spent a lot of this week crying, the unknown is so scary and so frustrating. He said I am a very difficult case. When I return.....IF IF I can get insurance to cove rmy appointment I will be having three tests. An anal manometry, defecography, and small bowel testing. These two doctors will then overlook them and decide what is best for me. I am scared, nervous, and just trying to remain positive in what has been a negative situation for the last year. I feel like I am losing my mind.....I just needed to vent. I have everything else going for me....I have a great job, husband, family, friends, etc....but this bag consumes my life. I just needed someone to here me......
 
Lizzie
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic May 27 for poss. K pouch with Dr. Remzzi
 
"The Greatest Healing Therapy is Friendship and Love"


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 6/1/2009 9:11 AM (GMT -6)   
Lizzie, I really feel for you. I can imagine how frustrated you are! I really think once you return to work and your life gets back to "normal" as much as possible other than the bag, you will see a tremendous change in yourself. You may even begin to find the "old" Lizzie. Won't that be great? I know it's easier said than done, because I had the bag also and was in your situation of not knowing, but what I tried to do was accept what my life would be like if I had to have it forever and just pray that I didn't have to. You will still have your health, life, friends, husband, etc. and you will still be you with or without the bag. Now I say this knowing that it's easier saying that on this end than it is hearing it on yours, but I'm trying to think of the good for you. These are the things my husband told me when I was facing the same thing as you. As a matter of fact, I may soon be facing it again, but more on that later....YOU are the focus here! When I think of you I think of a young, vibrant, beautiful woman who helps people with cancer and is beautiful both inside and out with or without the bag. That bag does not define you or your life, please try to remember that!! It's just this "thing" that helps you continue to be YOU and without it you wouldn't be here. Keep your chin up my friend, we love you!
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - March 13, 2007
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Temporary Ileostomy due to small bowell perforation Septepmber 29, 2008
Ileostomy Reversal - December 15, 2008
Multiple Small Bowel Abscesses-December 22, 2008
Leak at original Anastamosis -December 25, 2008
JP Drain removed - January 23, 2009
Still adjusting to life without my large intestine...
 
The whole world is at your feet; so paint your toenails Red!
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/1/2009 9:31 AM (GMT -6)   
I think going back to work will help you also! It will give you something to concentrate on and keep your mind off things. It will also give you back a sense of self worth. (i dont mean that in a bad way, i hope that made sense!)
You arent being selfish thinkign of yourself, you are just having a hard time dealing with a really really hard situation. And it doesnt make it selfish to take time to worry about yourself right now.
I hope the therapy helps you, and that going back to work helps also!

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 6/1/2009 10:42 AM (GMT -6)   
Lizzie...
 
Granted a lot of us did have a pretty nasty little disease post ileo.  However, I believe the only difference from our situations and yours is that we had a diagnosis.  We had medication options and optimism from our medical teams.  It sounds like you have had a constant battle with an unknown culprit and have recieved few answers.  Of course you're living in an emotional limbo! 
 
You have suffered for years with some form of bowel irritation and I'm sure great discomfort.  When you close your eyes and imagine what that had felt like all those years, what do you think?  What does your heart tell you?  Are you stressed and overwhelmed b/c nothing seems to be working and you are still suffering?  Having failed medical attempts is very difficult to accept and it does horrible things to your heart and soul. 
 
Now, close your eyes and what do you feel?  Is that discomfort gone?  What positives do you feel physically and emotionally?  What has given you those positives?  Your ileo?  Possibly so.
 
Your identity is an extremely important and cherished entity of each one of us.  We are constantly learning and changing every second of every day.  However, every once in awhile we are faced with situations that require changing that we do not agree with or accept.  My advice to you is to focus on what makes you feel good.  Do you feel better when you have your hair and make-up done?  Do it every morning.  Is there is a certain outfit or form of dressing that makes you feel good about yourself?  Wear them as often as possible.  Do you enjoy nature and soak up the sun?  Take 30 minutes each day and just live in that moment...let your hair down and just be.  I always suggest wearing your favorite most sentamental jewelry while doing housework.  There were days during my recovery that I wore pj's and slippers, but had my hair and make-up done like I was going on a date.  : )  What your likes and favorite things?  Focus on them. 
 
Do not allow yourself the opportunity to dwell and focus on and feel the negatives.  The more you see and understand the positives, the more you'll begin to believe them and before you know it, you'll be living with just the positives.  I know the negatives to having and ileo.  I know the daily responsibilities and fears of having a wafer pop, but I choose to focus on the positives.  I'm not sick.  I have control now.  My body is much happier and my quality of life is just magical. 
 
I agree that seeing a counselor or psychologist would be the best thing for you right now.  Medications can take 4-8 weeks before seeing a drastic change in one's emotions.  And the physical pains you're feeling may have a lot to do with your stress, as one's physical wellbeing is greatly affected by their emotional health.  However, the medication is only a helping hand in the stress/emotional management.  The rest of the work must be done by you.  : )  That's not fair is it?  However, it's like the discussion on Chassity's post...I stated that the next step from this point is peach and acceptance.  I feel that you can and will achieve that step just as soon as you work on loving you, all of you.  Get to know you again and I cannot stress how important it is to follow your heart.  Allow your heart to make some decisions regarding your feelings and I guarantee you'll start seeing a brighter side to every day.
 
smurf  
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 6/1/2009 12:21 PM (GMT -6)   

Thanks for you replies everyone.....

I was doing well for about a week and it was not until the Cleveland appt. did I slip back into this depression. My problem is I do not know what makes me feel good anymore....I changed my bag today, skin break down, etc and was in the bathroom for over 45 min....with a liquid yellow ouput. I just finally ate some cherrios dry for today, but I had quite a few.

Robin your words are so loving and comforting....I hope that I can get there. I believe this period of uncertainty is what is weighing do hard on my heart right now. The no answers and no definitive plans. I am so frustrated with being told "you are such a difficult case" or "you are such a big question mark and we have no idea why this has happened to you." There are parts of me, yes, that i know my ileo has made me feel better. I have color in my face and have not had that in months....it is working and stool is not stuck inside of me rotting and without a way to come out. There are then the things that I do not feel any better....horrible back pain that has not gone away and no one can tell me what it is from, but I live on a heating pad. I also am still having nausea issues seven weeks out and I am not sure if this is normal.

I have a beautiful life and I feel that I cannot find its real meaning. My husband has beeen wonderful and so supportive of my ups and downs. I guess I just need a frm conclusion to my case. Dr. Remzi is the third doctor I have seen and if he cannot figure it out I do not know who could. I feel selfish because this bag has brought so many of yo urelief you have not felt in years....and I am complaining. I think I would feel better if I just knew why? or how? and what can i do. If nothing, then maybe it will be easier to start dealing with.

I have not left the house yet today....blinds closed, dreary day so far. I may try and go for a walk.......thanks again for your support. I really need it right now and you all are the only ones who understand me.

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic in six weeks for further testing....awaiting approval.
 
"The Greatest Healing Therapy is Friendship and Love"


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/1/2009 3:32 PM (GMT -6)   
Your back pain is probably still from surgery, are you leaning forward when you are walking and not noticing it? make a very concious effort to stand and sit up straight and that may help your back.
I wonder if your nasuea is related to some of those meds they are giving you? Or if you are a little dehydrated, that can make you nauseaus.

Booka
Regular Member


Date Joined May 2008
Total Posts : 60
   Posted 6/1/2009 9:32 PM (GMT -6)   
Hi Lizzie,
I,m not sure you remember me,but we have talked before...My daughter Takera has had the same history as you,and went through alot of the same things that you are going through... Takera is almost 1 yr post op from her illeo, amd she is still having problems w/ being nausous...her docs have told us that it is very common w/ the sickness that you have. She is on zofran,and nexium daily,and it has helped,but not 100%...Takera has had all the tests you are getting,and it did turn out to be her rectum was the biggest problem,and lower part of her small intestine not working that well...her docs told us that the j ouch and/or k pouch are not good options for her...we have heard all the same things you have,about being a mystery,hard etc... We have decided for right now at least...we are happy w/ the illeo...it is the best she has ever been,her quality of life is so much better now...We are praying for you daily,try to focus on all the positive in your life...what I know of you you are such a caring and giving person,You always give positive advice,and remind others to keep a smile on their face!!I t will get better!! I know its hard but try not to focus on the bag...think of it as a bump in the road that saved your life!! Vent anytime,and I do pray for you daily!!
Krista & Takera

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/2/2009 4:10 AM (GMT -6)   
Lizzie--sorry you are having such a difficult time. The support you have received on this thread is amazing! What caring people we have on this site:)

I think you should see what happens after you have your tests at CC...remember that the people who perform the tests can vary just as much as doctors, so it is a good idea to have the new tests done. I am sure Dr. Remzi wants a current picture so he can best help you...I know they aren't fun but you'll have the most current information to base the next step on.

Maybe it will be fun to see your co-workers again? I know helping others is a great way to get your mind off of the things you cannot control at the moment:)

Take care

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 6/2/2009 8:21 AM (GMT -6)   

Thanks everyone for you loving advice.....

Yesterday was not good, but I am going to try and make today better. I cannot do anything right now, but wait for the answers from CC.

Krista and Takera- we have become a very similar story......thank you for all your continued kind words and prayers, I truly appreciate it. It makes me feel good to know that at least I have helped others on this site at sometime. I never thought my case would come to the point it has....I never imagined in my wildest dreams having a bag, but it did save my life and I have to try and remember that. It makes me feel some sort of relief knowing this nausea is not made up in my head. Zofran is the only drug out of four that has worked for me....I am on ohenergan right now because my insurance will only give me 20/mo and I am supposed to get 90-120. I go through the 20 in a week. I am working on a prior authorization, but its been over two weeks and I have not heard anything. My surgeon has made a referral for a psych doctor as well, but I have not heard on that in a couple weeks either. So if Takera's problem is in her rectum why do they not think the j pouch would work for her? I am just curious what they have said becuase it will help me prepare for what I could hear. As far as I know....my small bowel has a normal transit time. I was tested in January. My latest defecography showed failure to empty rectal vault in January as well. I have not had an anal manomety since 07....so that one should be interesting. I passed some mucous and stool again yesterday......what do you all think of this?

Thanks Ohio and summerstorm and all who have replied. You have no idea how much your words mean to me.....

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic in six weeks for further testing....awaiting approval.
 
"The Greatest Healing Therapy is Friendship and Love"


Booka
Regular Member


Date Joined May 2008
Total Posts : 60
   Posted 6/2/2009 10:30 AM (GMT -6)   
Hi Lizzie,
I hope that today is a better for you...just take it day to day,or even hour to hour...what ever gets you through!! Takera,s drs said that from there experiance w/ cases that are so severe,that the j pouch has not worked...I think the number of kids that they had tried it on was around 20,and of those most of them had to go back to the illeo... We did not discuss the k pouch...I dont know how similar the j pouch and the k pouch are. With Takera also she only has about 2 inches of her rectum left...they had to remove most of it because of a sticture,and not working. I think that it makes Takera not a good canidate for either of the pouches...she does not want to try right now at least...she doesn,t want to have more s/x or be in the hospital...but I think that it is a good sign that you are passing something...Takera did not pass anything....her drs told me the same thing about giving everything a rest and it might start working...and she hasn,t passed anything,so I think that is a good sign....my therory has always been something is better than nothing. Also I think that since they have not removed any of your rectum,you may have a better chance of the pouches working...If they had given us a better post op view we would have tried it...she just couldn,t take any more ...Just keep on the insurance...I have had to fight for everything for Takera also...I have had to even call senators,and newspapers to get the insurance to do the right thing!! Thank God we don,t have socialized medicine yet...I would rather fight the insurance,than put on a waiting list for months or years...Try to keep positive...and hang on to the hope that this testing will give the drs good info...like I said before.Takera had nothing pasing,and still has nothing passing,I think that is good...keep focusing on that . Oh yeah Takera has had to go into therapy on/off to deal w/ all this,her drs actually made a strong suggestion for it...I think it has been good for her...Hope this has helped...also Takera,s drs told me that the CC is #1 for adults..Talk to you soon,and your in our thoughts,and prayers!!!
Krista & Takera

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/2/2009 10:43 AM (GMT -6)   
Lizzie,
I've been away for a few days, but caught up on reading today. Hope you're having a better day, and maybe the fact that you're passing some stools is a good thing! I hope so, and I hope you'll be a candidate for a pouch; I know how much you want that.

Keep us posted and I hope you're feeling well.
Janie

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 6/2/2009 10:32 PM (GMT -6)   
XM
My heart goes out to you. I have been following your story for a while and I feel so sad for your suffering.
I wish I could help, but I am unfamiliar with the specifics of C.I. and had never even heard of it b4 this site. (since I've been on this forum, I've found out a relative by marriage has it and she thinks she is alone.......)
You're so brave to keep moving forward after all you've been through.
If you had to have a permanent ileostomy, would it be so bad? I understand if you think "Yes it would be." If it's just not for you. But at least you would FEEL physically better (emotionally better would eventually come).
You would get used to your ileostomy workings. You'd get faster at changing and better at choosing appliances.

But if you can't see yourself that way, we'll all hold your hand through whatever else comes your way.
*hugs*
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 6/3/2009 12:52 AM (GMT -6)   

Oh Goodness....Thanks everyone for all your support and kind words...

I had a little better of a day today, but having horrible insomnia tonight. Its almost 3 am and here I am just sitting up thinking of my bag, the insurance approval, the appointment, the tests and how i deal with the bag during them, my future, and my ability to accept. I had a good cry today with my best friend...its so hard for any of them to possibly understand how I feel or where I am coming from. I know so many of you with ileos do not understand this disease of inertia....but its awful and completely opposite of your problems. Funny how I would have paid millions to have diarrhea or butt burn....how ironic are these horrible diseases.

Krista and Takera...I do have all of my retum and all of my small intestine. So maybe just maybe I will be a candidate for the j pouch. It my HOPE and DREAMS.....thanks you for all your continued prayers and words of encouragement. I have missed hearing from you both and pray that Takera continues to have success with her ileo....the poor thing went through so much. I love you guys and admire your strength.

Janie and Chassity- Thanks for your kind words....this has been a horrible time for me and your words mean so much. Chassity, I also admire your strength and if I do here that the bag is final I hope you will  hold my hand....i will need you.

Lizzie

 


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic in six weeks for further testing....awaiting approval.
 
"The Greatest Healing Therapy is Friendship and Love"


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 6/3/2009 4:01 AM (GMT -6)   
Lizzie,
There are a few of us out here reading your story, not knowing exactly what you are going through - we've not experienced it. I just wanted to let you know, that I too, am sending my thoughts and prayers your way. Keep that positive attitude. Try not to worry today about the things you cannot do anything about TODAY. Make a list, put it on paper... get it off of your mind. Insomnia sucks. I've had some of it due to other medical issues (not myself) and it is not any fun. Seems like the brain can only deal with so much, then it goes on overload! Do take care, "try" to keep a positive attitude and deal with what you have control over, 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 
 


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 6/3/2009 10:46 AM (GMT -6)   

Lizzie,

I'm praying that you have better days ahead of you.  It's always hard when you don't know what is going on and you're in so much pain.  I know work will help to ease the pain and take your mind off things for the moment; it will especially be nice to be doing something you love and are good at.  I understand how you feel about the bag because I almost ended up with one a couple of weeks ago that wouldn't have been necessary at all so I would be feeling the same way right now but remember it saved your life and right now for some reason your rectum is starting to work and it hasn't in years so maybe, just maybe time is on your side and things are changing for you.  These drs are giving you 6 wks, by then, you don't know what changes could be taking place.

Go back to work, remember that we all love and support you and try to take each day as it comes; do just one little thing to make each day brighter for you and you will see each day will get better.

Blessings, peace, and prayers,

Judy


 
 
Judy
 
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 6/3/2009 8:11 PM (GMT -6)   

Thanks everyone for your kind words and for following my story. I am going to call tomorrow and check on my CC appointment being approved. I have a question....being new to this ileo I am not sure what is normal. I have been having luft upper quadrant stabbing pain all day today since I was in the shower this am. I am having output but onlly emptied twice today so its definately decreased and my back pain is out of control. I have taken my meurontin three times with no relief as well as ibuprofen 2 times as well.....just curious if you had any thoughts.

Thanks again for thinking anf praying for me...I had a better day emotionally today, but physically bad...its always one or the other it seems :(

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic in six weeks for further testing....awaiting approval.
 
"The Greatest Healing Therapy is Friendship and Love"


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 6/3/2009 10:30 PM (GMT -6)   
your back and upper left quadrant pain sound similar to mine. My surgeon thinks a number of possibilities-- just healing, dehydration, adhesion, pocket of fluid. My pain is just settling now and it has been over 3 months. I was taking motrin or alleve round the clock until GI gave me a quick round of prednisone. I would suggest calling your doc and describing the pain and the decreased output. If you start vomitting or have really bad nausea and the ostomy stops producing, call immediately. Hope things start getting better. For me, it has just been in the last 2 or 3 days that I have felt a marked improvement. We're in this together!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 6/4/2009 2:30 AM (GMT -6)   

Hi Lizzie

Sorry to hear of your emotional and physical plight.  I also pass stool and mucus - been doing so after around 2 weeks after surgery.  it is normal.  could be you had problems passing stool before because of the obstruction you had before emergency op? dont no. 

i havent been on here a while.  I still get bloated but nothing like before and tummy ache from time to  time.  i still cant eat fruit or a lot.  i will always have a sensitive gut. 

i am having a rough time at home (facebook status). cant really post on there cause my kids will see.  marital problems big time and family issues going on.  i am really depressed right now.

all the best x


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
 


lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 6/8/2009 8:54 AM (GMT -6)   
Hi Lizzie.  It' been awhile, but I'm back online a bit this morning.  I had my ileostomy on May 28th and am still in the hospital.  I have been super nauseaus and have had a nasogastric tube in me until this morning.  My bowelsounds have finally woken up and we're hoping that everything will start working today sometime.  In the meantime, I get a few icechips at a time and pray to get better and be able to go home soon.
 
-----------------------------------
 
'Colectomy aug 2007
'Ileostomy may 2009
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