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Total Colectomy Part 11

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Posted 8/2/2006 4:09 AM (GMT 0)
Amey-

I really never had much bloating after my surgery. In fact I had not felt so skinny in many years. However, I had developed thrush and it took me a long time to even regain taste. So, when I did eat it was very little and gradually more.

As for my menstrual cycle I didn't miss a beat. Go figure. I could have lived without that first one. What a pain in the belly! (LOL) I had just finished two days before my surgery and started two weeks after I came home. I have been regular ever since.

Nonna (Sandy)-

I continue to go 4-6 times a day and the fact is I still have (d) frequently. I may be in the bathroom 30 min. after I eat or it may be a couple of hours. I never worry about the (d) and am greatful for it. Honestly, I swear it's the Gatoraide. Just fluid and electrolytes. Try it...maybe it will work for you too. The one thing I know, I have much better control over my body. I eat cheese if I want more formed stools and drink Gatoraide if I want looser. I can hold it for awhile but perfer not too.

I think its kind of like how a diabetic works. You just follow the bodies lead and work with it. Does that make sense?

I'm leaving to go on a trip for a few days. I'll read everyones entry's when I get back. I hope this helps. I really am glad I found this site.

Janna
Posted 8/2/2006 4:21 AM (GMT 0)
Cathy-

Oh my gosh...you are so on! The sticker on the door...I love it! One thing everyone needs to realize when they have this surgery, LAUGHTER is the best medicine. We have to laugh at ourselves or we'll break down in tears!

I'm 39 today...and life is good. I feel better now than I have for 12 years. So, this surgery is a blessing to me and I hope for all of you!

Janna
Posted 8/2/2006 5:13 AM (GMT 0)

Nonna-I've wondered how you are doing as well! I have lost your phone number...if you still have mine give me a call so we can chat. It's been a strange journey...

Cathy-I've also wondered if your luck had improved while mine took a nose dive! Are you all fixed now? Any lingering problems?

It hadn't occurred to me before that I might find myself in a bind with only a small intestine if there was some subsequent problem because I couldn't imagine anything possibly happening! Now I'm starting to second guess myself. What happens if the next fall (or stumble...or stumped toe for that matter!) rips up my small intestine again? There's not much room for error now and that worries me. Like my second surgeon said, I don't have any more to spare...

Posted 8/2/2006 1:26 PM (GMT 0)
Nonna,

I was talking with my Dr this morning and I asked him what someone could do to increase their daily BMs.  He said that fiber increases the amount of stools.  He said fiber wafers and eating dried prunes.  You can mix this with the Gatorade suggestion and see how it works.  I was not going to the bathroom very well and I started drinking prune juice in the morning and after lunch.  It works great for me. 

Let me know if you try it!

Good Luck!

Posted 8/2/2006 4:36 PM (GMT 0)
Do you use powder gatorade and mix with water or purchase the pre-made from the store?

 

Posted 8/5/2006 4:32 AM (GMT 0)
Hi Everyone,
Amey - thank you for sharing. I'm glad the doctor found your problem and corrected it. Five years is a long time. I have been trying your suggestions on the biofeedback.

My brother doesn't have a bowel probem but when he does need help he said Plum juice works wonders.

I had the Cardiac Profussion Test today. It wasn't so bad. Worse part of it was the waiting between tests. Total of 3-1/2 hours. At least I know my heart is okay, at least the stress test part of it. Won't know about the films until next week.

My manometry referral needs one more person to sign off on it. Once okayed I will go to the University of California San Francisco to have the test. And then hopefully I can be scheduled.

Hope everyone is doing good and improving with each day.
Posted 8/10/2006 1:49 PM (GMT 0)

Hi Everyone...

I see the forum is extremely slow..I hope that is because everyone is having a great time...

I am 7 weeks post op and I feel great except for the bathroom issue...going 15-20X/day..with 2 imodium 2x/day I get pain in my (R) side and with 1 pill/2x/day I go 5-10 x/day...I have to play more with this or see if I can get Lomotil and see if that is any different...Other than that I am back doing light gardening and some lawn mowing...I have no more excuses, I have to do the housework now...bummer

Take care and let's hear from you guys.

Phyllis

Posted 8/10/2006 4:13 PM (GMT 0)
It has bee a while since i have been on here. I had my surgery on may 24th. I had all the large intestines took out except for about 2 inches. It has been really hard for me due to the fact i was so sick for so long. I was in the hosptial for 9 days. I developed and illues while in the hosp and had a ng tube put in for three days (the ng tube was a blessing). after the surgery my abdomen distention really started to going down. i got to the point that i was going 20 times a day and taking 10 immodium. i then got an annal fissure and was put back in the hosp. was let out of the hosptial and back in the hosp a week later the tears was inflammed. I was put on nitro cream for the fissures. My abdomen distention totally went down in couple weeks after surgery. I have not taking any immodium for the last month i guess and now i am having to take milk of magniuesa because the abdominal distention is back and they say that my small intestines now are not doing what they are supposed to do. i have to go see my surgon agian today. I have seen a doctor every week since i have had my surgery. He keeps telling me that i was so sick that nothing is wanting to work the way it is supposed to. i am finally back at work on a modified schedule and only about 6-8 hrs (i work 12 hr shifts). I am not sure what is going to happen today. during this period i lost my grandfather. It has been very hard for me and i am getting very weak and tired. I do feel like the surgery has helped but i was so sick for so long that it is causing all the little complications. my doctor tells me he is sorry for all the stuff that i have been thru. my gastrolists tells me that i was very lucky my colon was so bad, it was damaged, enlarged, elongated, and ready to explode. I am glad to hear that everyone seems to be doing good i will just be glad to get over the hill and see some light. at this time i still do not sleep, i eat very little, and i drink a lot of water, tea, and gatorade. I still eat liquids to keep things moving and 1 dose of MOM a day. I am hoping to hear something encouraging with my surgen today.
I am sorry to write so much but i left out alot. I hope you all have a great day.
Posted 8/11/2006 2:57 PM (GMT 0)

Hi everyone,

Zoe here.  It's been over a year since my surgery.  I'm doing well enough.  I walk now, don't run anymore.  I just don't feel like it.  I never put back on any of the weight - still at 95 lbs. and holding.  I still have trouble with fresh veggies (I used to love big salads) but I am starting with fruit.  I have to remember to chew, chew, chew.  I've always been a fast eater.  I have to force myself to drink water.  I know I don't drink enough.

I have a doctor's appointment next month.  I think I've developed a rectocele.  Hopefully I'll have other alternatives beside surgery.  My hemmrhoids came back too, but I'm still happy I had the surgery.  I still have bowel movements about seven times a day.

Zoe

Posted 8/12/2006 12:30 AM (GMT 0)
Hi Everyone,
Phyllis B - I think I read somewhere else on this board that you are retired. I am hoping that means you are over 50. I really want to get feedback from someone over 50 who has had a total colectomy. I am 55 and I just would like to hear from someone who also is over 50. I have had slow mobility since I was 35 but it was only last year they did the sitzmarker test.

ZoeS - I haven't seen you post for awhile. I'm glad you are doing well. 95 lbs is not alot for someone to weigh. I hope you keep improving with each day. I also hope your doctor visit turns out okay.

The past four days I have been trying MoM. I have never used it before. I take it at 6 pm and by 6 am I have a puddle. Not much stool but is is something. It just makes me feel sick like I want to throw up. I tried taking fiber again today (8 heaping spoons) and my stomach is so so bloated. I'm never taking fiber again.

Hope all is well with everyone.
Posted 8/12/2006 1:12 AM (GMT 0)

Hi Resa

I am 54 and retired from VA after 28+ years as a vascular technologist.

I had my laparascopic colectomy on 6-19-06..  I would be happy to answer all of your questions...

Phyllis

Posted 8/12/2006 1:37 PM (GMT 0)
Hi,
Phyllis B - I guess I am just extra nerveous because I am over 50. I know people heal differently but it will help to get feedback from someone around my own age.
1. What was your recovery time like. More extensive than someone younger or about the same?
2. Did you have any complications - major or otherwise? Any blockages, leakage problems from connection
site, etc.?
3. What was your pain factor like. Was it bearable?
4. How many BM's do you have per day? How long before you had your first BM? How many days in
hospital?
5. If you were bloated before surgery has that been resolved or at least better?
6. Did you get any infections?
7. Did you fear having more problems than someone younger having this same surgery?
8. Do you think you might need a bag some time later in your life or do you think your body is adapting and
that you will be okay?
9. Did you need to wear surgical nylons during and after surgery to help prevent blood clots?

I am just very nerveous. I do not think it is the surgery itself - I think it is more how will I feel after they take part of my body away. I have had this colon for 55 years - good or bad - how did you feel emotionally after the surgery?

The surgeon at the VA hospital and at my HMO say I am a good candidate for this surgery. After thinking long and hard I am going with my HMO because he is a colo/rectal surgeon. If complications do occur, as they might, I will not worry so much about where to go for help. The surgeon is going to try it laparscopically first. If need be he will open me up.

Okay that is enough for one day. I think I have said way too much. Phyllis - whatever you can tell me will be greatly appreciated. Thank you for your feedback.

Everyone else - good healing and have a wonderful day.
Posted 8/12/2006 2:03 PM (GMT 0)

Hi Resa

I'll try to answer all your questions.  My surgery was laparoscopic...I have 3 small scars and one bikini line scar that is longer where they removed the colon.

My surgery was done at the Cleveland clinic..(I live in NY) I was in hsp for 6 days and on day 9 we headed back home.  I had no complications except bleeding hemorrhoids from going so much.  As far as pain was concerned, I had a pain pump..I used it when needed and especially when I got in and out of bed. You have to stay ahead of the pain...if you wait too long it takes longer for the meds to work.  I was walking the hall by day 2 and also showered with help and a chair on day 2.  I pooed on the 5th day..it was very watery at first...Presently without meds, I go 15-20X/day however taking 1 imodium I am down to 7...I have to play with the dosage a little more and the bm is more formed.  Prior to surgery I was extremely bloated and my abdomen was very hard...I was on Prevacid, miralax and zelnorm and had to take mutliple enemas a day before I could go...it was very painful...now my stomach is nice and soft..but I have a pooch which I hope when I start exercising will be better.  I did not get an infection..I was on cipro and flagyl intraop and post op for several days.  As far as my fear was concerned it was overcome by how bad I was...I was so scared that I would obstruct and have to have emergency surgery under nonideal circumstances that I felt very comfortable with my decision.  Concerning prospect of a bag..preop my surgeon gave me his stats and that he had only a 2% inidence of patients having to have a temporary bag (he emphasized not permanent).Going back to my frequent BM my surgeon said it may take 6 months or more for things to settle down so patience is the key.  To prevent blood clots, just prior to surgery I was given heparin and during surgery until I was walking steady I wore intermittent pneumatic compression boots which mimic the calf contraction during walking...not uncomfortable..just like a leg massage.

What VA are you having the surgery...

Keep the questions coming...I'll answer anything but I am only 7 weeks out so perhaps someone else can give you info who is further along.

Take care...Phyllis

Posted 8/14/2006 1:09 AM (GMT 0)

rbowden,

I am so sorry you are having such a bad experience.  My heart truly goes out to you.  After my first colectomy, which was performed incorrectly, I had an anal fissure and it was so painful!  I had to put nitro on my bum and lidocaine for a month.  It as the worst pain ever!  I am 6 weeks post colecomy #2 and things are better.  I have to drink lots of prune juice to have a bm and eat prunes.  Because these items are high-calorie, I can only eat one meal a day.  I run about 4 miles a day and drink 70-80 oz of water but I still struggle.  Have you talked to your DR about Zelnorm to help with motility?  I take 1 pill everyday.  Also, once in a while, I take 2 tbs of Sorbitol.  I get it from the Wal-Mart pharmacy.  The pharmacist has to order it but it is a non-prescription item.  It helps produce a BM.  Please post if you find anything that works.  I would like to read some new ideas.

ZoeS,

How long did it take for your tummy to get flat again?  I was 119lbs when I went into the hospital but I have gained about 4 pounds and I am sure it is in my stomach.  My pants are tight and it is driving me crazy.  I have not attempted ab exercises yet, but hopefully the puffiness will go down once I can exercise more.

Phyllis,

I am glad you are "going" less...how is the bum bum doing?

Posted 8/16/2006 1:59 AM (GMT 0)
Hey Everyone,

My Surgeon suggested joining a light areobics class or a water areobics class to help flatten the tummy. I chose to try water areobics. I love it. The two exercises we do that seems to target the tummy is to run in the water and to tread water. Just start out slow and steadily increase. Don't push yourself to the point of pain. Our instructor started us on 4 laps on the running part. The running part you only need to be in water chest deep and go at the pace you can. She said to start at a brisk walk and slowly increase speed at intervals you can handle. Treading water is a total body workout. We started at 3 minutes and are up 8 minutes now. I have been going for 6 weeks. It is a slow process but my tummy is showing signs of reducing. The nice thing about water areobics is it is essentially non weight bearing so can be done by anyone. If you can't swim you can use a noodle to hold you up. when treading water you can still use the noodle. Just make sure you still kick your hands and feet and go through the motions like treading water. As our instructor adds more exercises that works the abs I will keep eveyone informed.

Mary
Posted 8/16/2006 2:14 AM (GMT 0)
The other exercise my surgeon told me to do to help flatten my tummy is to the lay on the bed and push out with my tummy muscles and hold to the count of five. then release. he said then suck in and hold to the count of five. He said do as many repititions as I can. Work my way up to twenty. He said after I can do 20 with ease start adding weights on my tummy. He said start with a book with a little weight. Do as many as I can till I get that up to twenty with ease. He said work my way using different things around the house that is flat until I get upto using a red clay brick and can do twenty with ease. He said once I get that far I should have a almost flat tummy. He said just make sure that as the weight increases it is small amounts, not big weights at a time.

Mary
Posted 8/16/2006 2:41 AM (GMT 0)
Thanks Mary!  These are some great ideas.  Here in FL it is super hot.  I think I will try treading some water tomorrow!  I appreciate you taking the time to explain these exercises in such detail.

Amey

Posted 8/16/2006 2:15 PM (GMT 0)
Hi Everyone,

I have been taking 2-4 tablespoons of MofM for about a week now. I get a little poo in the moring. Last night my palms of my hands and my left leg were burning like a chemical had been spilled on them. And my Verdigo was so severe that I had to get up twice to throw up. My skin was clammy and sweaty. I am still feeling sick this morning. I called the advise nurse to see if I had taken too much of the MofM or maybe I had an allergic reaction. She couldn't tell me she only made me an appointment to see the doctor today. Have any of you had a similar reaction? Maybe the three symptoms are not even related.
Anyway, thank you for listening.
Posted 8/16/2006 9:08 PM (GMT 0)

Resa,

I have never heard of such a reaction.  When did you have your surgery?  I remember having sweats after my surgery because my body was going through withdrawal from the meds.  I had sweats for 2 weeks.  Please post your doctor's response so we all my learn from your experience.  I hope this was a one-time deal and tonight is better for you.

Take care,
Amey

Posted 8/16/2006 10:06 PM (GMT 0)

Resa,

I haven't heard of that kind of reaction either.  You can have the burning sweats from too much magnesium but it would have to be alot, like 3 or 4 gms of magnesium at a time.  You can also get hypertonic reflexes.

Cathy

Posted 8/17/2006 12:04 AM (GMT 0)
Hi,
Cathy W/Amey - I have not had my surgery yet. But when they last took a Liver panel my AST/GOT and my ALT/GPT's were high. Therefore, when I got dizzy and sick last night I thought the MofM was causing a problem because of the high liver readings. I never took MofM before. Anyway, I spent all day at my primary doctor's office. She took more blood work and found my ALT/AST's were still high so now she is doing other tests for the liver to see what is causing the high readings. She said the MofM had nothing to do with my being sick last night - Only my VERTIGO. I just hope these high liver readings won't cause my surgery to not be scheduled. I still need to do the Manomentry before my surgeon will schedule.

Anyway, the room is spinning around.
Posted 8/17/2006 7:47 PM (GMT 0)
Is anyone taking Bentyl and if so, does it help?  My stomach always feels full (7 weeks post-surgery). I even feel full when I wake up in the morning.  I am having numerious BM.s day, but I never full empty my system. I only eat 2 meals a day. 

I wonder if Bentyl would help?

Posted 8/23/2006 12:01 AM (GMT 0)
Finally got my appointment for the manometry. The authorization was approved on 8/9/06, but UCSF never received it. In fact, I never received it. I had to call Outside Referrals to request it. Then I called UCSF to make the appointment. The scheduler couldn't schedule without all the paperwork. It took the scheduler all day to get one piece of paper from Outside Referrals. The scheduler never received all the paperwork she needed. The scheduler had to call the surgeon to get the information. At 4:00 pm the scheduler called with the appointment. I am not looking forward to this appointment, but the surgeon will not schedule until he has the results. After the Chief of the hospital approved the exam how difficult can it be for the Admin Assist. to fax over the information. I'm sorry I had to vent on this. Anyway, I have the apppointment for September 21, 2006 at 12:30 p.m.

I also think I was sick last week due to the Milk of Mag - not vertigo. I took the meds I was given for the dizziness and neasea. For a few days I didn't take the Milk of Mag while on the meds and I started to feel okay. Then I took the Milk of Mag again and the same symptoms came back. Very dizzy and sick to my stomach. I threw up again and had to sleep on the recliner. I guess for some reason my body cannot take magnesium even in small doses.

Thank you for listening. Hoping everyone is doing fine.
Posted 8/23/2006 1:37 AM (GMT 0)
Resa,

The manometry exam is very easy  - if my memory is correct.  It is just to test your muscle strength.  It is the sigmoidoscopy that was painful.  I had both tests done at the same time.  Having a scope in your intestines with no meds is killer, but the manometry wasn't bad.  Good Luck

Posted 8/24/2006 7:50 AM (GMT 0)
Hi everyone. Glad I found this site. I'm 37, had a total colectomy last December, and spent 3 months in the hospital following - was putting out gallons in output through ileostomy. Even spent three days in ICU with a blood pressure of 70/30. Anyway, had ileostomy reversed just 3 weeks ago (August), and now have questions for anyone who has similar colectomy experience....How long does the severe rectal pain last? Bm's are very frequent after meals, putting a real damper on leaving the house. When will they become 6-8/day like the surgeon hopes for? What are the really good foods, and has anyone out there got horror stories from food that really didn't agree? If anyone is in the ulcerative colitis stage, or the ileostomy part after surgery, it does get better. I'm just trying to find out how much better, because I'd like to return to work, and lead the best life I can. Anyone with tips, I welcome your input. Keep your chins up too - I've had very blue days, but also some blessed days compared to the dehydration and pain associated with ulcerative colitis....perryz
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