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Total Colectomy Part 11

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Posted 8/25/2006 4:56 AM (GMT 0)
Howard C

Hi.  I'm sorry to hear you have had so many complications and hope you are feeling better soon.  I had a sub-total colectomy on May 17, 2006 and a repair of a hernia with complete bowel obstruction on May 24 2006.  I was curious when you mentioned the "ulcerative colitis stage" as I developed severe ulcers in my small intestine following all of this.  Did you develope similar complications?  My physicians made it sound like it wasn't common.  How long does the ulcerative colitis stage last?  I was hopsitalized for 5 days in July for it and I am still having some problems.

As for food, I was told no artificial sweetners, no citris, tomato sauce, avoid milk and raw veggies.  I was drinking the Propel and didn't realize it was irritating my intestines and the physican told me that it was because of the artifical sweetner.  I am use to snacking on veggies and really missed them and before I was given that advice had eaten some and boy did I pay.  I'm still waiting on that one for the most part.

Hope this helps.

Annette

 

Posted 8/25/2006 5:16 AM (GMT 0)
Annette,
Sounds like you had your share of troubles too. My demise started in Sept. 05 with diarrhea like crazy, diagnosed with ulcerative colitis. Didn't fare well with Asacol (vomiting), and had three hospitalizations with dehydration last year before my surgeon ripped out my colon for me. Yep, had inflammation in small intestine too. Have had 6 or 7 doses of Remicade for that. Almost set a record for hospital length of stay after colectomy - 3 months!.....Hope your ulcerative colitis improves. I was told early in diagnosis to expect flare-ups over the next several years, with medication to help control. Hope you have more luck than I did.........Howard c
Posted 8/25/2006 4:52 PM (GMT 0)

Howard

Welcome to the group.  I had complications following my total colectomy and ended very sick.  I had a 2nd surgery that landed me with a ileostomy.  My hosp. stay only lasted 6 wks though, which was plenty for me, thank you.  I had my "take down" in Feb 06.  Food was very much trial and error after that.  If I can say one thing, the ileostomy was nice in that whatever I ate, came out, and pain free.  Now, what I eat decides how comfortable or uncomfortable I will be.  The obvious non-digestable things go right through- corn, sesame seeds, carrots to some extent, lettuce.  The gas producing things go right through with splatter (gas)- beans, broccoli, cabbage, cauliflower.  The absorbant foods (starches) slow things down- pasta, rice, bread, tortillas, chips, potatoes.

I've had the butt burn problem.  Some things really chap my butt, so to speak.  To make matters worse, my pregnancy induced hemorrhoids are back with a vengence.

By 6 weeks after my "take down," I was starting to feel somewhat normal again.  I was back at work 4 weeks after, but really tired.  I just checked by blood studies again, and finally everything is back to normal.

Hopefully this helps.  It does get better!  I live a normal life now, I just pick my foods more carefully.

Cathy

Posted 8/26/2006 5:18 PM (GMT 0)
Hi Annette,  I had a question for you.  Why did your Dr. tell you to avoid citrus and tomato products?  Are they just too irritating?  Glad to see your doing well!
Posted 8/26/2006 9:27 PM (GMT 0)

Hi Mom23

I believe it was because of the irritation in the small intestine.  We were trying to get things to settle down.  That was actually just a few days before my last hospitalization where they found that the small intesting was full of ulcers.  It has been a long road and I hope things will continue to improve.

How are you doing?

Posted 8/26/2006 9:53 PM (GMT 0)
I'm doing really well.  I'm soooooooo glad I had this surgery.  It has really changed my life.  You never know what tomorrow may bring, but for now, all is good and I pray it will stay that way.  I didnt know you had a problem with your small intestines after the surgery.  I hope you are all healed now!  jody
Posted 8/28/2006 7:32 AM (GMT 0)

Hi Everyone...

Hope everyone is doing well..Hey Mom, glad to hear you are okay.  I am also glad I  had the surgery...I am 2 months out but still having difficulty with frequent BM's..15-20X..I have started to use imodium...It makes me feel funny but it is helping...other than that all is great...getting out and about and gardening and just beginning to enjoy my retirement...

Take care everyone and keep in touch

Posted 8/30/2006 9:22 PM (GMT 0)

Mom, how long ago did you have your surgery? I cannot wait for the day that I can post an email like yours.  I had my surgery b/c of lack of motility.  It turns out that the problem is in my small intestines also.  I hope that with time, my SI will learn to adapt and things will get better.  As for now, I am just praying and having faith.

I am glad that there are success stories that I can read which give me great hope!!

Amey

Posted 8/30/2006 9:43 PM (GMT 0)
Hi , I had my surgery in April.  It is all worth it, just hang in there.  Phyllis, things will slow down for you, they did for me.  I go about 3-4 times a day now which is great.  Try eating more carbs if you really want things to slow down. It works.
Posted 8/31/2006 2:05 AM (GMT 0)
Mom23,
When could you add more things to your diet...fruit, veggies, meat.... I find that all veggies, even lettuce cause bloating and the only meat I can tolerate is light fish. Every day I eat 10 prunes for breakfast, wheat-free pasta for lunch, and Tilapia for dinner. When I add something new, I feel awful but I am so board with these same 3 foods ....I feel bad even complaining about this...eating without meds is a blessing!
Posted 8/31/2006 4:34 PM (GMT 0)
Amey,  I can tellyou that if I ate 10 prunes for breakfast I would be so miserable and bloated.  Try skipping those and see if it makes a difference...I bet it will.  I can eat them at night, before bed with no problem.  Let me know if it works!
Posted 9/1/2006 2:05 AM (GMT 0)
mom23,

I cut out the prunes this morning and had egg whites instead.  Yes, I was less bloated in the morning, but I am more bloared this evening because I have had less BM's today.  I chewed 2 Benefiber tablets to replace the prune fiber but it was not as effective (I am not sure why). 

Thanks anyway for the suggestion.  I will try to play with my diet more and see what I can figure out.  The hardest thing is that most of meals were veggies and now I can have none!  I miss steamed veggies and salads.

Posted 9/1/2006 11:12 AM (GMT 0)

Hi Amey,

I guess I am going to show my ignorance...I don't understand about taking fiber..My surgeon told me I didn't need extra fiber because I no longer had a colon....Please explain

Phyllis

Posted 9/1/2006 11:49 AM (GMT 0)
Phyllis,

I had to have my LI removed because I have a motility problem.  This problem also exists in my SI.  It is because of this that I have to help things move through my SI.  I only had 2 Bm's a day until I added the prunes and prune juice. Now I go about 6 times day. I can handle the bloating, I just do not understand the weight gain and edema.  I am looking for a new GI to help.

Take care,

Amey

Posted 9/1/2006 5:27 PM (GMT 0)

Hi Amey,

See, I would have thought that fiber would cause bulking and make stool that much harder to pass...I didn't realize it was just the opposite...thanks for info

Posted 9/1/2006 6:15 PM (GMT 0)
Hey all,
I haven't written in awhile. I just recently had surgery, but this time it was a Hysterectomy. I did however end up with another ileus. Blah
I spent five days in the hospital with a nasty NG tube. It did help though, my Ileus finally woke up. How is everyone? I feel bad for not writing sooner, I have just been busy with my kids. How are you Somer, Emma,Kathy? I will check back later.

Blessings,
Sasha
Posted 9/2/2006 1:53 PM (GMT 0)
This topic is soooo! long! confused

Isn't is about (past?) time to start a new thread?

 

Posted 9/10/2006 4:59 PM (GMT 0)
Hello all! Newbie here, and a scared one at that...lol

My name is Laura, I am 24, live in Texas, and am the mother of 2 beautiful babes.

I am scheduled for a total colectomy on Wednesday and thought I was handling the news well, but am doing the usual pre-op freak out. I have battled IBS-C and lifelong colonic inertia. My sitz markers were still at the top of my small at the end of the first week.. ha ha (not really funny )

So they are pulling the whole thing out. about a 50% chance that I will need a temp colostomy. I have so many questions....

What do yall say is the average hosp stay after surgery? My doc says about 6 days, the nurse says 2 weeks, everyone at work says 3 weeks to a month.

I am having the long cut, not laproscopic, what kind of scar does it end up looking like, and when they sew you back up, do they tighten the rectus or anything up? (mine is wayyy separated after childbirth)

I used to go about once every 5 weeks or so on my own, is that an indicator of how often I will go post surgery? I also don't have a gallbladder, will that affect things?

How bad do you feel when you wake up? Really? How long is it until you feel like getting up and moving around? How long unti lyour first BM usually?

Anything and everything you would not mind telling me is appreciated, I just am so nervous right now, I am not sleeping, shaking all over, and STARVING since I am on liquids only since yesterday..lol

Thanks ahead of time for your patience with another Newbie!

Laura
Posted 9/10/2006 9:19 PM (GMT 0)
Hi Everyone,
Welcome Laura. I haven't had my surgery yet so I cannot answer your questions. I hope all turns out okay for you. When I took the sitmarker test all the rings were throughout my colon from the cecum to the rectum. I was diagnosed in November 2005 and still waiting for a surgery date.

I received a 15-page questionnaire form from the UCSF for my manometry exam. I am having trouble answering some of the questions so I marked those with green stickies. There is one question on the form that I feel has obsolutely nothing to do with having a BM. The question makes me so angry. I dare them even ask. One more week and it will be out of the way. A week after that I see the surgeon again. I hope the test comes out okay so I can get scheduled. I am so scared I just want it over.

There was a time in my mid- to late 20's that I would have a BM immediately after swallowing something sweet. I was thin and dehydrated. Doctors said it was an allergic reaction to sugar. Then when I turned 35 I ended up not being able to go and have been this way for 20 years and getting worse all the time. Being on both sides of the fence, I preferred the going.

Anyway, hope all is good for everyone.
Posted 9/11/2006 12:43 AM (GMT 0)

Laura,

 

I can only share my experiences with you and hope that they help you in some small way.  I am 11 weeks post op from an open colectomy.  My scar is from my naval to my hair line. I woke up in the recovery room following the surgery.  I was very lucid and sore; however, I tolerated the pain well.  The next two days were more difficult as I tried to move around and walk a little.  By day 3, I was walking 1 mile a day in the hospital (1/2 mile in the morning and 1/2 mile at night). By day 5,  I was walking 2.5 miles in the hospital.  I requested that the nurses stop giving me pain medications on day 4 because the meds cause constipation.  I had a BM on day 6.  I was able to have a liquid diet on day 6 in the hospital. However, I became very distended and constipated on day 7.  My doctor requested that I stay in the hospital for 2 more days on a clear liquid diet which I did.  I came home on day 9.  I have been on a low residue diet ever since.  I walked 2-3 miles for the first couple weeks home and then slowly increased to 4-5 miles.  I now run about 4 miles day or cycle 17 miles a day.  My abdomen was tender and bloated for a while.  I still get bloated easily and I continually remind myself that I am still healing.

 

The best things I did after surgery were 1. Stopping the meds and 2. Walking.  This combination increases the healing process. 

 

I do not have any knowledge to assist you with your prior gallbladder surgery. 


I would compare the pain to how I felt after I gave birth.  I was sore, tired, and tender, but I could function well and the pain was tolerated.

 

I hope this is helpful. Best of Luck to you!

 

Amey

Posted 9/11/2006 4:04 PM (GMT 0)
Probably time to start a part III :)
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