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Total colectomy part 17

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Posted 10/1/2007 7:54 PM (GMT 0)

Hi Everyone

Hope the post op people are doing well.  I had surgery 6/2006.  I was going 15-20X/day..Had sig and found proctitis, pouchitis and superficial ulcers.  I am taking a medicated retention enema now and the pain has gone away and I am going only 8-10X/day and am finally getting much needed sleep.

You would think going so often that I would have lost weight but not the case.  I did join weight watchers and have lost 31 lbs and have 42 to go...Now that the number is reduced and I am sleeping, the weight is coming off faster..if that makes sense...Perhaps my body went into preservation mode...who knows but WW is working for me.  If I wasn't such a couch potato perhaps I could lose faster.....I admire the people here that say they are jogging and walking several miles a day...good for youVIEW IMAGE..I wish I was that ambitious.

Take care

Phyllis

Posted 10/1/2007 9:30 PM (GMT 0)
TYBLOSSOM - How very nice to hear from you!!!  Thank you for the info on the Reglan.  Yes, I've slowed down considerably since May, around my 6 month post-op anniversary.  Had tests ran in June to confirm nothing was wrong.  Turns out the colorectal surgeon thinks it's caused by a lazy small intestine.  I'm now on Miralax daily, sometimes twice a day.  I've also been dealing with nausea and when I do make an appointment with the GI I will ask him about it.  I haven't tried the Alli - let me know how it goes.  I've also regained all my post-op weight (30 pounds) and I'm dealing with that bloated, pregnant look as well. 

PHYLLIS - Congratulations on Weight Watchers - I'm very, very proud of you.  This is an awesome accomplishment - good luck with your goal!!!

I'M HOPING ALL IS GOING WELL FOR EVERYONE!!!!!!

Posted 10/1/2007 10:20 PM (GMT 0)

Robin:  Before you had the TC, didn't they check to see if your small intestines were working properly?  Also, just to warn you, Reglan caused horrible side effects for me.  I got severly depressed, I would grind my teeth and my legs were restless...oh, and I was so tired that I couldn't drive or take care of my daughter.  My stomach already has trouble emptying...I am a little concerned with your story and Stephanie's...I can't afford to have a slower stomach.

Lindsay

Posted 10/1/2007 10:49 PM (GMT 0)
LINDSAY - Unfortunately the ONLY test I didn't have pre-op was a small intestine transit.  Thank you for your input on the Reglan - I'm not sure if that's the answer for me either.  I suffer with major depression as it is - I take A LOT of medication daily that would basically knock even a big man down.  The surgeon was even amazed at the amount of medication my liver processes daily and understood why I needed stronger medication the the "average" person would need post-op.

I've come to the conclusion that MiraLAX will be a part of my daily routine for the remainder of my life, along with a magnesium supplement.  I'm still thankful for the TC and consider it a success - regarless!!  I'm NOTHING like I was post-op as I'm able to go, if not once a day, at least once every other day.  This was something I couldn't do once a month before surgery.

Again, thanks for you thoughts and concerns!!

Posted 10/1/2007 11:06 PM (GMT 0)

Hi

Concerning the lazy small intestine.  Preop, I had a sitz marker test and X-rays on day 1 showed all the markers in the large intestine and that is where they stayed for 8 days until I could take stuff by mouth and enemas.  So my thinking is that if the markers went into the large intestines fast, that would mean that the small intestine is functioning well and is not sluggish...or am I making a presumption...or is this progression of the disorder we have....

Posted 10/1/2007 11:11 PM (GMT 0)
Hi Robin,

I'll let you know about the Alli. I bought some online and a friend gave me some of her Xenical which is the same thing, but double the dose so I could try it right away. I took one tonight and ate dinner about an hour ago and haven't gone yet.

I'm with you though...even though I still have problems, going every other day is way better than once every 14 days like I was before. I couldn't do the Mirolax. I can't remember what my problem was with it, but I know I took it and had issues....tried sooooo many. I don't have any problems with the Reglan thank goodness. I'm also happy using Senna, but haven't used it. Hey anyone wanting to lose weight, I just found www.fitday.com which lets you use a free food journal and computes carbs, fats, etc. and your goal too. Will tell you how much you need to lose a week to get to your goal weight/date you want to lose it.

Stephanie
Posted 10/1/2007 11:47 PM (GMT 0)
Phyllis B: Your right...I never thought of it that way.  Even though I only passed 3 of my markers after 8 days, the first day I went for my x-ray they were all in the large intestine...good...this makes me feel better.  I am still going to ask the surgeon when I see him to run a small intestine transit anyway...just to be safe.

Posted 10/2/2007 12:09 AM (GMT 0)

Hi Lindsay,

I would be interested in what surgeon says...I would like to know if the colon inertia is limited or is this a disease process that could spread to other sections of the digestive tract.....or if going less is just the small intestine acclimating to the fact that there is no colon....

Thanks

PB

Posted 10/2/2007 1:27 AM (GMT 0)
Phyllis,
Congratulations on your weight loss! 31 pounds is A LOT! How do you feel now that you have lost that much weight? I am sure you look FABULOUS!
Posted 10/2/2007 1:37 AM (GMT 0)
I'll look fabulous when I hit goal....The mirrow looks better ev ery day...My back and knees really do feel better..plus it has been a big boost mentally....Plus WW is just eating healthy and being aware of portion size.. Thanks for the atta girl.
How are you feeling?
Posted 10/2/2007 11:50 AM (GMT 0)
Hi Everyone,

Phyllis - good to hear you are down 31 pounds. That's great. WW never worked for me. I tried before the TC. But since my TC I am down 45 pounds with 20 lbs left to go. The first 30 was within 2 weeks of surgery. The other 15 has been hard work. I average 2.5 lbs a month. I find a lot of food these days does not taste good to me anymore. Taste buds gone bad I guess. Not eating a lot and going a lot still do not take off the pounds as quickly as I'd like. I went to LA Weight Loss Clinic last night for a consult. I'm thinking if I will go or not. Anyway, good luck in reaching your goal.

I tried Xenical before my TC and it did absolutely nothing. The only diet pill that ever worked and worked beyond my expectations of a diet pill was Phen/Fen. It was a miracle pill. I lost without even trying. But they took it off the market, oh well. I thought about trying Alli but I go so I do not need it. I did get stuck up for a week. I thought maybe a blockage was forming or the connection site was shrinking, but then it just shot out like a bullet one day. Since I have been drinking throughout the day some prune juice mixed with white apple/grape or white grape. It has cleared matters up and keeps things moving.
Posted 10/2/2007 1:02 PM (GMT 0)

Hi guys-

just to let you know about the small intestine: If you still had markers from the test in your small intestine, this would mean that it´s WAY TOO SLOW!!! The average transit time of the small intestine is about 6-10 hours, sometimes less, sometimes a bit more.

So even if you did have all the markers in your colon on the x-ray, it does not mean that your small intestine is not slow. For example, I had all the markers in my colon, and still my small intestine showed abnormalities in the small bowel manometry.

Unfortunately, the whole digestive system is linked, so each organ "knows" what the other one is doing. For some people, the surgery can be a real cure, but for others, they still have to deal with their stomachs and/or small intestines. Again, I can only say what basically every doctor told me: That surgery is not nearly as successful in people who also have upper digestive problems. I guess everybody is different...

Hugs,

Andrea

Posted 10/2/2007 5:43 PM (GMT 0)
Andrea,

This is so true! Even while having a bag, I still have slow motility. By removing the use of my rectum, I now have a faster transitit time than before the surgery, but my small and stomach still digest slowly. I still have to eat small meals and I feel full very easily. However now, I do not have the extreme bloating, cramping, and booty pain.
Posted 10/2/2007 10:14 PM (GMT 0)
AMEY & ANDREA - Thank you both for clairifying the info on transit time with regard to the stomach and the small intestine.  Although I haven't officially had a small intestine transit test (YET) my surgeon "believes" - after other testing - that the small intestine is lazy.  I have slowed down quite considerably and must take MiraLAX and magnesium capsules daily in order to keep things moving - sometimes taking MiraLAX 2xDay. 

Do I think the TC was a success?  YES!!  I'm at least thankful that "something" works now that never did before.  Of course I wish I didn't have to take supplements and thought the TC would eliminate them, however, I'm so thankful that what I'm doing is working and pray it will continue.  If things do change for the "not so good" I will have to cross that road when it gets here.  I really need to see my GI again soon anyway and will ask him at that time if there is a test that can be done or something else to confirm a "lazy small intestine"

PHYLLIS - OMG - you GO!!  Congratulations on your weight loss!!  I'm very proud of you and know you MUST LOOK AWESOME!!!  Do NOT underplay the loss - 31 pounds is SIGNIFICANT and you deserve a BIG "YIPPEE"

MOM2SOPHIA - I think you requesting a small intestine transit test is the best choice you can make.  Please keep us posted and updated!!

STEPHANIE - I know all too well the MANY things we had to try with no success - it was sure an endless cycle wasn't it?  I'm thankful that what I'm doing now is working and hope it continues.  Thanks for the link for fitday.  I only had a second to take a look, but will check it out more thoroughly later - How did the Alli work?  Did the XENICAL do anything?  Please remember to keep us posted.

RESA - You also deserve a BIG Congratulations on your weight loss!!  You're losing at a rate that is good!!  This way you will be less likely to regain as long as you watch what you eat and continue exercising!!!!

Posted 10/3/2007 10:31 PM (GMT 0)
Hi Robin,
I just got the Alli in the mail today. Xenical is the same thing, just double the dose. I took the Xenical two nights in a row and I didn't have to run to the bathroom like people say, but I do think I went more than I normally would. I am still taking the Reglan twice a day though. Like I said though, I think I went more often. I'll chime in after a week or two and let you know if it's a sure thing. I did lose weight though...yeah!
Posted 10/4/2007 12:47 AM (GMT 0)
A study done on Alli showed that it only helped people burn up to 130 calories more each day. To me, that is not enough to make a difference in someone's weightloss. A person burns about 85 calories just by sleeping and you burn more calories while going through REM cycles..so if you want to loose weight, try getting a little more sleep :o)
Posted 10/4/2007 3:02 PM (GMT 0)
Thanks for the info Amey...

Their web site says the following.....

Taken at meal-time, alli works by blocking about 25 per cent of the fat in the food a person eats. Because of the way it works, alli must be used in conjunction with a reduced-calorie, low-fat diet containing about 15 grams of fat per meal.

I personally eat a high fat diet (The good fats-Sugar Busters Diet). So it probably will take more fat from my diet than someone on a low fat diet. Either way though, if it only helped reduce 130 calories a day, that's still 47320 in a year which is almost 14 pounds.

I could use that...Also any bathroom advantages.
Posted 10/4/2007 3:29 PM (GMT 0)
"if it only helped reduce 130 calories a day, that's still 47320 in a year which is almost 14 pounds."

I like the way you think :o)

I have never heard of the Sugar Busters Diet. What is that?
Posted 10/4/2007 7:38 PM (GMT 0)
It's written by some doctors down south. They believe in eating a low glycemic diet which is very similar to the South Beach diet. I lost over 120 pounds on it and have kept it off since 1999, but in the past 3 years I've gained like 35 back. Now I'm using the Xenical/Alli and I went back to walking on the tredmill and also using the free www.fitday.com to track food and exercise to see what works. Hopefully that combo will help me again. I wish we could sleep it ALL away...that would be sweet...wake up every morning at our original birth weights and just have to eat all day to get to the right size LOL. I can't seem to regulate my sleep. I sleep like from 10pm to 6pm every day. I can never go back to sleep or take naps. You can tell Hubby to take a 8 hour nap after waking up and he has no problem. He can also stay up like 48 hours straight if need be. I can't do that either.
Posted 10/4/2007 10:13 PM (GMT 0)
Hi Everyone
Hope everyone is doing good and problem free.
As for me I'm not feeling so good, alot of cramping, going to the bathroom
all the time, then can't go. The last two days I have been going all day, I'm
so raw that nothing soothes my bottom. This whole week has been real bad
my husband lost his job, it came out of no where. I'm not working so that
does not help. I am so streesed out that I've been thinking doing something
stupid, (you know what I mean right). I cant handle stress real good, I try to
take the easy way out.
I'm on medicine for my depression and just saw my doctor, she changed some
of my meds.
I don't see my sugeon anymore so I have to find a new gastro, the only one
that is in my plan is the one I went over a year ago and told me there was
nothing wrong with me, I just had IB. He did not want to help me at all.
If he only knew what he missed, I would love to just give him a kick in the ass,
and tell him I had colonic interia and had to have a TC.
There are other doctors in his group, so I'm wondering if I should try someone
else. Any ideas????

Well I can go on forever about all my problems, but I know all of us have them.

Hope all of you are doing good , Thanks for being here for me. :)

April
Posted 10/4/2007 11:09 PM (GMT 0)
April, My best friend took that easy way out and all I can think of is with the Internet, how his life would have been so different if he had only known the future. This was back in 1995. I was preggers at the time...not a good time for me, but things get better. If you go back and read my posts you'll see all the terrible stuff I've gone through. I'm now 75% better and happy and can live with this. I went to doctors too that wouldn't listen..just pushed meds...didn't believe. I finally found a doctor who did believe and I got a sub TC. Hopefully your hubby can either find something else or get unemployment. Think of this as an oppritunity for change. Everytime I've had things happen like break ups or loss of job...things worked out for the better. I always think about the problems I had in my past and they all worked themselves out. Take a shower and get some fresh air and some LIGHT. Make yourself move.

for your bottom, sit in a bath. My Mom has even sat in an ice bath...I keep tucks in the fridge so their cold. Use ointment even if you don't have to once your not so raw.

BIG HUGS TO YOU FROM EVERY PERSON WHO I KNOW WILL READ YOUR POST AND WANT TO REACH OUT TO YOU,

Stephanie
Posted 10/5/2007 12:17 AM (GMT 0)
Stephine,

Thank you for all your support it means alot to me.  We have had alot of

teenage deaths within the pass 6 months.  All were car accidents including

drug, ecexpt one was succide.  All these young teens were in our High School

or just graduated last year.  My nephew & neice know all of them and even

dated two of them.  I think how hard it is on these teens who lost loved

ones.  When I think of it I say why take someone so young when they

can have someone older and not healthy someone who has missing peices

and doesn't have a good life. Don't get me wrong, I would here if it wasn't

for my girls, they are my life.  Any time I want to take the easy way out

there is a little voice that says my girls need me.  I'm just worried that

one day that voice wont be there, then it's to late. I just put my daughters

though hell.

As for trying a new doctor should I go to someone else in that group since

my insurance company doen't have much to choose from.

Thank you again for your support, it does help.

April

Posted 10/5/2007 2:11 AM (GMT 0)
April

My heart just broke when I read your post. I feel like my words are not enough for you...you need a hug! {{{{BIG HUGS TO YOU}}}}
Please try not to think of such horrible thoughts. You have no idea how many people love you and need you. I am so sorry your husband lost his job. Both of my sisters have been through this and it is such a hard experience. However, if one of my sisters took their lives...well, I can't even think about that. Lets just say, my life would be incomplete and I would probably cry everyday for the rest of my life. I am sure your daughters would feel the same way if anything ever happened to you. When it comes to Drs, please exhaust every resource you have available. I saw 13 different Drs until I finally ended up in the ER and the on-call Dr found my problem. NONE of the previous 13 Drs realized that I had a problem. They all said my constipation problem was in my head. Finally, when I ended up in the ER they discovered my intestines was twisted like a garden hose. You can't give up on yourself. There are answers out there..you have to push to find them. I know this is hard...but I believe you can do it. I can tell by your previous posts that there is strength in you. Please use this forum to get you through. We are all here for you. Post as much as you need to if it helps you, but don't give up on yourself. Your life is way too important.

Big hugs to you.
Amey
Posted 10/5/2007 2:51 PM (GMT 0)
April,

You need to go to doctor after doctor until you can find one that will help you. Tell them you want another opinion. Maybe you can also ask if your allowed to get a referal to a doctor out of your network if they are a specialist and you can tell us what area your in and we can offer up our doctors. Mine was in Cinn. Ohio. Or call your surgeon's office and ask them if they can see you again.

So so tough to see the life of a child end. I can't even imagine how your family is dealing with that kinda loss. I remember I would wake up in the middle of the night with my stomach being soooooo bloated in pain and just having to think about my kids so much to get through the pain. I just couldn't imagine how I was going to deal with it. I'm not bothered by pain too much either as I could careless if I have to have surgery....so that says how that bloating pain we feel is so painful.

I haven't gone back through the posts, but you've already had a TC and your still having pain?

Stephanie
Posted 10/5/2007 10:27 PM (GMT 0)
Amey;
Thank you for your big hug, I needed it. I know someway I will get through this.
A feel like I have more support from everyone here then at home. Thank you Thank
you again.

Stephanie:
Thank you also for your support. I will try another doctor to see what is going on
with me. I had a TC in Feb. 07 for colonic interia along with other problems.
I had a good surgeon but he is so far, and there is nothing else he can do for
me. I'll keep trying.
Thank you again.


April
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