To Amey?? or anyone with CI or TC

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carebear25
New Member


Date Joined Dec 2007
Total Posts : 6
   Posted 12/23/2007 10:56 AM (GMT -6)   
hi Amey,
i read alot of your posts and sounds like your CI case is very similar to mine and my TC was not sucessful. i just posted about colonic inertia question.  i had no way of emailing you but i would really like to talk with you some how.  i am at point where to feel better docs are suggesting going back to ileostomy, but permanently....i am scared becuase it's my 3rd surgery and i really struggled with the ostomy, to feel good about myeslf.
 
physically the ileo helped me to regain back alot of lost wt and eat but wearing the bag was very very difficult emotionally as it triggered flashbacks of sexual asssault and felt like trash.  i wanted to run from the bag so bad and tell it to get off me...and i would cry, the smell made me get sick alot and developed a bad relationship with food.
 
yes, physiologically it may have helped but docs don't get what it's like to be young woman in college who is single, fearful of intimacy enough with out the ostomy and yes, i have taken my concerns to counseling.
 
i am a very strong person and yet i feel so worn out lately.  i have lost 25 pounds past 6  months but stable not losing anymore....i swim alot but i know with ostomy it will take some time till i feel comfy swimming again.  i really have enjoyed bag free living...yet pain is getting worse.
 
were you ever back on laxatives and enemas after TC?  miralax does not workfor me...i been on every med and over counter product out there....i get so sick though that i am getting fed up and sad.
 
i am an art student and i use art to help me express myself and yet i don't know what to do as classes start again in 3 weeks.  i was supposed to get ileo surgery Dec 12th but wanted be home for holidays...mydoc agreed to let me wait till  summer to do school but i am not sure if i can sanely keep up with enemas and laxatives and pain....i have tried herbal stuff, casstor oil, get some relief but yesterday back in x ray department for obstruction series
 
scary when you think youru stomach i the problem and really its' fact you are full of crap up to your rib cage...can i say YUCK!!!!!!  i have small and large dysmotility issues
 
i ahve tried biofeeback and pelvic massage to help mymuscles relax and not tighten up or hold stool in....helps to relax body but not like you said a real cure....
 
myquestino to you or any one out there is i know i am only one who can make this ileo decision or stay way i am but i am scared what to do; i have seen many surgical opinions and gi specialist...my case too is complex and have an older sister with a similar rare gi disorder but more stomach and small intestinal issues....
 
i have had frineds with colon issues but more complex illnesses that ended their life early in 20s.  i don't have the same other illnnesses as them like heart issues...so i been searching for any support or forum then found this thank the Lord i did this morning
 
i wanted to cry becuase it's Christmas and i try so hard to wear a mask and be happy even when it hurts inside...going to go do a fleet enema cuase i can't go, bloating and every time i eat get more backed up....ahhhhhhh!  i feel like a cow becuase if i could just not eat i would not get backed up as quickly...
 
i know i have to eat but it sucks!  any suggestions or support i need it please!!!
 
carebear25

Mom2sophia
Regular Member


Date Joined Aug 2007
Total Posts : 262
   Posted 12/23/2007 11:34 AM (GMT -6)   
Hi Carebear.  My heart aches for you. I am also a college student who has had to put my life on hold b/c of CI...have been suffering with it for a good 8 years.  I am due to see my surgeon in Jan. to discuss a TC date.  Could I ask you some questions?
 
Did they do a Upper GI with a small bowel follow-thru?  Did they do a Gastric Emptying Study?  What was your regimen to relieve yourself before the TC?  What did the Sitz Marker Study show (if you had one)?
 
Take care...you are in my thoughts and prayers.
 
Happy Holidays,
Lindsay

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/23/2007 12:16 PM (GMT -6)   

Carebear,

 

My heart goes out to you. I can remember those days where I was laying on my left side on the bathroom floor with my knees up trying to insert an enema.  This was such a horrible time in my life and I am sure you feel the same.  I remember going three days without food and trying to teach my fitness classes.  There were so many times that I thought I would faint in the class.  I would say and prayer in my mind to my Heavenly Father and beg him to please help me to finish teaching my classes.  As far as laxatives went, I was taking a full regime.  The bad part of taking laxatives is that they are habit forming and your body needs more and more to have the same effect.  I was drinking a whole bottle of Citrate of Magnesium everyday, I took Amitiza 2-3 times a day, I took tons of Sorbitol (which is an over-the-counter laxative like Lactulose), I drank about 1/2 bottle prune juice daily, and I did more than this when ever things got worse.  The problem with all of this is that I became very depleted in my electrolytes and very dehydrated from all the laxative agents.  I ended up in the hospital many times.  In June 2007, I was placed in the ICU for 9 days.  I had to have a single nurse caring only for me and no other patients because they thought I could die at any time.  My heart was struggling and over working because I was so dehydrated, my kidneys were failing, and all of my blood levels were critically low.  My highest blood pressure was 65/38.  My health was deteriorating fast.   I was released from the ICU and sent home after I was hydrated and my kidney levels increased.  However, by the end of July I was back in the hospital again because I was still taking all my laxatives at home.  After 15 days in the hospital it was decided that I need to have an ileostomy. 

 

I would love to tell you not to have the surgery.  I wish I could tell you to go get laxatives and you'll be ok, but that is not the case.  If if you find agents to help you poop, you are still damaging and depleting yourself.  Like you, I was in college when all of this got worse for me.. I was 24 when I had my first TC.  I have had to drop many classes in my life because I was in the hospital during exams or when large mid-terms where due.  It has always been frustrating for me.  I was happy to take classes on-line but the stress of studying and dead-lines made me more constipated -  you see, I hold all my stress in my gut and my gut is always tight. 

 

Now, I have the ostomy.  Yes, I want to rip this bag off and be free.  Yes, I do not want to see myself wearing this nasty thing forever.  It bothers me.  I hate feeling it.  I hate looking bloated because I have a stupid bag on, but I am healthier than I have been in nearly a decade.  I still have to take things to help me "go."  I eat breakfast at 11am and have a protein shake around 3pm.  At 4pm, I drink prune juice with a Tbs. Sorbitol.  This helps things move otherwise they don't go into my bag.  At 5:30, I have dinner and I take another Tbs of Sorbitol and prune juice at 8pm.  This regime has helped me a lot.  I am hoping/praying that I do not have to increase my usage of these agents and I can just focus on healing.  However, with CI of the entire gut, there is no way to predict what my life will be like in years to come.

 

If you had an ileo before and it served you well, I would go back to that.  I would be so overwhelmingly happy if I could have a normal ostomy.  I would be so happy if anything about my bowel could be normal and I could finally be agent-free.  I encourage you to put vanity aside, and get the ileostomy.  The world makes it so hard to have an ostomy.  The Victoria Secret commercials, TV programs with girls in bathing suits, and all of the tight jean/short shirt fads make having a bag very difficult.  But, you have to put your health first. 

 

I hope this has been of some help to you.  Please let me know if I can help you further.

 

Good Luck and Merry Christmas


Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


carebear25
New Member


Date Joined Dec 2007
Total Posts : 6
   Posted 12/23/2007 10:18 PM (GMT -6)   

Thank you Lindsay and Amey

your words were like water refreshing my soul

honest and real and not holding back that is kinda support i too need...i am trying to hold out through holiday as my doctor is not on and realizing today my body is very tired...i push alot to keep going afraid if i let it rest too much i may not get out of bed

that scares me most when i always been there for others and i want to make others at peace and happy espec during holidays...i know i may have to do this surgery, ostomy, soon though

may have to take off from school but next week i will have to make a decision as when deadlines for school are...but thanks Amey for being so honest about what helped you and yet being frustrated but healthier overall.

i know what you are saying about wanting to live and that matters more than what we look like/vanity issues...it sounds like your case more severe beingyou were in ICU but i know i been very ill and stayed home becuse i often my illness has not been taken seriously in hospital like it's in my head

Lindsay,never had sitzmarker studies, but gastric emptying was slow; my defacography abnormal; my small and large bowel motilitty studies showed my gut is very slow overall; i get easily backed up despite what i eat or how much; i don't find Miralax or go lytely helpful becuase make me sick more; fleet works best with combo of magnes citrate/phospha soda when need be

i use nausea and belly pain as key to know when i am backed up...i often try to eat seomthing to "push " stool out as some docs have told me just eat more and that's your issue...no it's not and i have been admitted when i had my colon for week at time due to not respoinding even to molasses enemas whcih are the biggest bang out there so to speak

i am frustrated but have alot of life in me in spirit.  i do find swimming in warm pool feel good on my muslces and gut...i take magnesium supplements and herbal things but it's really a motiliy issue....all the motility drugs used be on are now off market or i had bad reactions to

i still eat mini meals and comfort food basically to keep going and not lose weight becuase i know if i don't eat i will get weaker, but yes, i am tired of nausea and vomitting....i am tired of laxatives and yes, my ostom ywas not perfect and some days i had to fast to get output going again....i struggle with too many carbs, and can't handle too much fiber, dnot break it down

liquid diets don't run through me though and actually just sit in my belly and bloat me up; i crave real food and yes, i too am happy when i can eat what i crave espec on holidays; it hurts to have to not look at food becuse you want it so bad and yet you end up seeing food just as what blocks you up or not

i am a caffeine coffee nut not becuase i love it but becuase it does stimulate my bowel little bit....but i can't take it all time;;;  thanks again for all your feedback and keep in touch as i will too

happy holidays

carebear25

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