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Posted 1/2/2008 6:02 AM (GMT 0)
 My first time doing this, but I am looking for support and answers. I had a total colectomy in 2000, with a resection, so no bag.  My life is much better than before,even with all the issues that come with losing your entire large intestine.But now, following a total hysterectomy last year, I have been hospitalized with bowel obstructions three times. I know it is from scar tissue, but the doctors say there is nothing I can do to prevent them.  I curently am eating mostly clear liquids, as I do not want to go back to hopital, but broth and jello are getting old. Has this happened to anyone else?  It is hard to explain to others what all this is like~ 
Posted 1/3/2008 1:19 AM (GMT 0)
Glittery,

I had to have surgery b/c of my obstruction as well. I suffered for many years of being unable to get solid foods to pass after having a subtotal colectomy, I finally ended up living on Ensure drinks, clear broth, and jello (oh yeah, and lots and lots of surgar free popcycles and Jolly Rancher hard candies). When these things would not move through my bowels anymore, I was reduced to only jello and popcycles. After eating this way for 2 years and seeking medical help everywhere I could (and finding no help anywhere in sight), I ended up in the hospital in June 2007. I was close to death and given large amounts of IV fluids to stabilize my heart and kidneys. In Sept, I was giving an ileostomy (aka, life on a bag). I honestly have no idea how to answer you question. If I had a solution for you, I would share it with you. Please becareful with your diet. I do not want you to end up like me. Keep seeking for help and hopefully your luck will be better than mine.

Take care...
Posted 1/3/2008 1:45 AM (GMT 0)
Glittery,

I don't really have an answer for you, but know that we are here to support you and listen to you.  Someone reading this may have a response for you.  I have had several issues with adhesions causing partial bowel obstructions - mine seem to "let loose" after a period of time on clear liquids.  I can tell by the change in the pain in my abdomen.  Then I just gradually add soft foods til I'm back on my regular diet.  BUT  I have an ileostomy, so my gut is different that yours.  Good luck and keep your chin up.

 

Posted 1/3/2008 5:07 AM (GMT 0)
Thank you for replying. It is just so great to have people understand what this is like. Sometimes all my health problems, and surgeries, and trips to e.r. over the last 20 years overwhelmes me. I am 44 and at times feel 94. But there are times I know I blessed and far better than alot of people. It is hard when you have chronic problems, as I do not want to be perceived as a hypochondriac. My mother was bedridden from the time i was 11 to 17, and I had total care of her as it was just us two. And now I have a 12 year old daughter....I never want her to go through any thing like that. Thank you for letting me ramble. And thanks for reaching out.
Posted 1/4/2008 5:30 AM (GMT 0)
i was told i either need a partial or total colectomy. i am so scared. so many people said partial has high chance id just have to have total sometime anyway. does anyone have any advise. then to top it off now i am reading many of you are still having problems. i am feeling there is no end to this.
Posted 1/4/2008 9:27 PM (GMT 0)
Glittery, Thank you for sharing such personal information with this forum. I can truly relate to your post. My mother never ate dinner with our family and I never knew why. It really affected me as I child. My mother spent much of her time crying in the bath tub asking me to poor boiling water in the tub because her bottom hurt so bad. She never really talked about her problem but now I feel like I am living it. I have been sick since I was 24 and now I am 33. I do not want my children to go through what I went through as a child. I want to be a strong active mom and I push myself so I can be that mom to my kids. My mother died when she was 48. Her body just gave out. I do not want that to happen to me. Like I said, I can relate to what you talk about. Please use this forum as a place of relief.
Posted 1/4/2008 10:55 PM (GMT 0)
hey you guys,
i have never experienced the obstruction as my cd presents itself with diarrhea (sp). But you guys (glittery and amy) are moms, and I can tell you now, that although you may not want your children to take care of you, we will always want to. I have the opposite problem 25 and still constantly depending on my mom. I dont know what Id do without her, as she's had to do some pretty embarrasing and gross things for me over my lifetime (stool sample collections, looking at my bum etc.). However as a teenager i just felt like a child being taken care of. As an adult i feel like a constant burden. I hate her having to take off of work to take care of me, take me to the hospital, stay with me, even bath me when it got really bad. It's a horrible position to be in which is another reason i've opted for the surgery. I think it'll be easier on her, i dont want to hinder her life anymore.

Amey, this may be too personal of a question and if it is I apologize and completely understand if you chose not to answer. But i already told you how your post was what convinced me to get the surgery and join this site. However, it was the first post of yours i'd ever read so i dont know if you ever posted your history. You mentioned your mom, did she have the same diagnoses as you do now? (not sure what it is). I was just curious as to whether your gut problem was considered genetic. I dont know if mine is or not, ive read some places where they say cd is genetic and others say it isnt

I thought one day I'd want a family, but i wouldnt want to put a child through what my life has been like. I dont know just a randomn thought from reading your post
Posted 1/7/2008 1:16 AM (GMT 0)

Thank you for you reply, and Amey, we sound so much alike....it is comforting to know that others understand. What is your quality of life like now?  I would not want to go back to a non functioning colon, just did not know what issues were ahead after the total colectomy. 

we have to stay strong!

My advice to nietzsch6 is get a second opinion, and learn all you can on your own.  What is the cause of you getting a colectomy?  If after the research, you are faced with one, you have to weigh what will give you the best quality of life.   

Posted 1/7/2008 6:34 PM (GMT 0)
Glittery,

A TC did not work for me. After 7 years of fighting with my illness after my TC, I finally had to get an ileostomy. My results are not typical. You cannot compare yourself to me. My small bowel and rectum are both diseased. Therefore, removing most of my colon still left me with complicated problems. Hopefully, your body will not react the same way. You need to look at your quality of life now and determine if you want to have the surgery. For me, this was a no-brainer. I was dying. Any quality of life was better than were I was then.

I hope this helps.
Posted 1/7/2008 7:40 PM (GMT 0)
Amey, u've been on my mind lately, since the spinach dilema. How are you doing? are you feeling better? able to eat more regularly?
Posted 1/7/2008 10:48 PM (GMT 0)
Glittery,

You are too kind. Thank you for thinking of me. I am much better. I am back to my normal diet of eggs, chicken, yogurt, and fish (these are the only foods I can tolerate). Of course, this is 4 more foods than I could eat 6 months ago so I am not complaining.

I hope you are well.
Posted 1/8/2008 1:03 AM (GMT 0)

Amey - can you not tolerate any potatoes (mashed, scalloped, baked) or pasta or even well cooked white rice?  What about breads, toast?  Or pork, like tenderloin or ham?  Or beef roast with potatoes?  Just curious....  if it's your preference or the ostomy causing the limitations now?  

Glad your spinach dilemma passed for you.  I have issues with cooked spinach as well, like when I have an appetizer using chopped spinach (and I love those cheese balls, cheese spreads and even spanikopita), I know only to have a few small bites.   I'm not a cooked spinach fan.  But once in a while I eat a little fresh spinach with a small salad.  I have better luck with it raw and can tolerate it better.

Hope you have a better week....

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