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TOTAL COLECTOMY PART 18

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Posted 11/16/2007 12:00 AM (GMT 0)
Well, it appears that "PART 17" has been locked and "PART 18" is here to start!!!
Posted 11/16/2007 12:21 AM (GMT 0)
:-)  Good evening everyone!!  I hope the start of "Part 18" finds everyone doing well!!!!

Well I have an update on the tests i had that took place this week and last.  To make a LONG story short - I'm OK, thank God for that!!  The tests showed minimal change since the tests in June.  The surgeon did indicate that there was some narrowing at the reconnection site (can't think of the name of it)  sad  .

We discussed continuing with the MiraLAX twice a day and the Bentyl four times a day and I'm very OK with this.  Granted my bowel habits changed about six months ago, however, if I MUST take these medications vs another surgery - I'll opt for the medication.  Going once every other day is still better than one a month or not at all.  Since starting the Bentyl I've noticed that the discomfort/tenderness isn't as bad and something I can deal with.

The surgeon also made a very good point that just being one year out of such a HUGE surgery and the toll it's taken on my body - I'm really not ready for another one - not at this point in the game.

ALL IN ALL - I'm OK!!  Thanks to everyone for keeping me in their prayers!!!!  

Posted 11/16/2007 12:29 AM (GMT 0)

Robin,

That's good news for you and you seem to be oK with it.  I take Bentyl also.  I usually only take one in the morning, but if I feel that I need it, I can take one with each meal.   I've been on it for maintenance for several years now and it works well for me.  It does stop any crampiness or discomfort (mine is from adhesions). 

Good for you!!!

Posted 11/16/2007 1:56 AM (GMT 0)
Robin,
I'm so glad that you're okay. :-)
Cecilia
Posted 11/16/2007 2:09 AM (GMT 0)

Hi all,

I'm still around lurking...just haven't really had anything to add to the discussions. I had my colonoscopy this past Monday. It was being done because I was still having issues having a BM. It revealed a severe stricture at the anastomosis site, so the doctor used the balloon on it. He said that I'd probably have to do it again in the near future. He said that there was no way anything other than watery diarrhea would have fit through it, so that answered the question as to why I wasn't able to go. I also have a lot of granulation tissue around the anastomosis, and part of it was also blocking the way. It was left in for now, but if it's still there when I have the next colonoscopy done, it will need to be removed. The good news, for now, is that I won't have to go to Stanford for testing. The bad news is that I haven't gone since Monday, so I just ate my normal 25 prunes to get things moving. He had warning me that this balloon dilatation might not do anything because it needs to be stretched slowly.

I did have problems with the prep. I was using the Fleets Phospho-Soda and threw up both bottles. Since it was a Sunday, I had to call our nurse practioner from our office and have him call in Osmoprep (pills). That worked like a charm and was so much easier than drinking that 'stuff'.

Today I had my throid biopsy and should get the results next week.

Posted 11/16/2007 2:48 AM (GMT 0)
Irish,

There just isn't a miracle cure for those of us who suffer from motility disorders or chronic constipation. My Dr wants me to go see a specialist in South Carolina who specializes in hard motiity cases. WHAAAA, I do not want to be a hard case.

I am glad that you were able to be dilated. My GI specialist attempted a balloon dilation several times but my anastimosis was so narrow he could not fit the balloon in the middle to stretch the opening....thus, another surgery had to be done. Like you, I have my daily prune regime which I hope is not causing me to become depleted in electrolytes. I drink about 20-30 ounces of juice a day. I tried eating the prunes but now that I have a bag, the tough skins are hard to pass. I wish I could take Bentyl (I have some next to me) but it makes me feel mentally loopy and lethargic.

I am so sorry that you have not had a BM since Monday. I cannot imagine how painful your tummy must feel. I would go days and days without food because I could not have a BM. I have to say, that although I still have signs of CI with a bag, my life is still better than it was 3 months ago. I know you feel the same way about your TC. Have you tried lactulose for your constipation? My grandmother had a partcial TC and she takes this lactulose liquid several times a day. She says that it helps her a lot.
Posted 11/16/2007 12:25 PM (GMT 0)

PEGGY AND CECILIA - thanks for your warm thoughts - they're very much appreciated!!

IRISH-TERRI - It sounds as though you and I are having the exact same issues right now.  I'm so sorry to hear that you're also having problems having bm's.  Are you the one on here that works in a medical office?  Forgive me if I have you confused with someone else.  I'm very much hoping you are as I had a question regarding the narrowing of the anastomosis site.  I had my colonoscopy last Wednesday.  In the "results" section of the paperwork it says "end-to-end ileo-colonic anastomosis/exam was otherwise normal" - The surgeon then recommended a barium enema this past Monday.  After seeing him Wednesday in his office and agreeing on a "medication course of action" for now - I'm very happy with that at this point.  I will continue taking MiraLAX twice a day along with 20mg of Bentyl four times a day.  This route is giving me bm's about once every other day or so.  As he stated to me in his office, the Total Colectomy was "HUGE" and very hard on me and he didn't think I was up to another surgery at this time (my year anniversary was 11-09) and I couln't have agree with him more!

Have you considered taking MiraLAX or the Bentyl?  I think the Bentyl has made a difference in the tenderness and bloating of my abdomen and I'm thankful for that.  I'm not too sure if it's helping with increasing my bm's but I'll take what I get from the MiraLAX.

AMEY - I couldn't agree with you more - there just isn't a miracle cure for those of us who suffer from motility disorders or chronic constipation.  I'm beginning to believe that once we're diagnosed with CI - regardless of having the TC - we still have CI, but that's just my thought/opinion.  I couldn't imagine drinking all that prune juice.  I'll take the MiraLAX over prune juice any day.  Have you tried to take a lower dose of the Bentyl?  Half of a half dosage (if that makes sense)?  I've been taking it for about two weeks now and in the beginning it made me tired, however, with consistance in taking it this side affect has lessened.

I took Lactalose prior to having the TC and all I can say about taking this is "increased" gas and more discomfort.  I've read where a lot of people had this outcome from taking it.  For me personally, I wouldn't take it again because of the discomfort it causes.

My heart goes out to you sweetie.  I'm sure you don't want to be a "hard" case and/or have to see another specialist.  You have truly been thru so much in such a short period of time, not to mention, two big surgeries back to back.  I do hope someone or something can be done to help you out.

My thoughts are with all of you!!!!

Posted 11/16/2007 3:28 PM (GMT 0)

Amey

Thanks for the reply. I haven't tried Lactulose, Miralax, etc., because I'm not constipated per se. The problem is that the anastomosis is too narrow for anything to fit through. Too bad they don't make stents for something like this. The pictures from the colonoscopy were interesting. You can see the staples, which was kind of strange. I go back to see the GI in two weeks, so I'll see what he suggests. He said that we'll get things working one way or the other...and without surgery.

Robin

Your memory is fine. I am the one that works at a doctor's office. I don't know if the Bentyl would do anything for me. That's more for people with stomach and/or intestinal spasms. I just need something to keep things watery in order for them to pass. I ate my prunes last night and feel much lighter today.

Posted 11/16/2007 4:14 PM (GMT 0)

STUCK -

OK, 1/2 Bentyl here I go!  This is a great thought.  I figured it cannot hurt to try it and see if it helps. My script is for 20mg 3x per day.  Hopefully, taking 10mg will help.  Thank you for your kind words.  They really made me feel better.  MY GI specialist is suppose to call me Monday and let me know if he has any sugestions for me.  If he has anything good to say, I will let you know.  The only medication that used to give me some relief was Zelnorm but that has been off the market for nearly a year.

Have a great weekend!

IRISH - I am glad you are feeling better.  Prunes really are a magical fruit.  tongue

Posted 11/17/2007 1:37 AM (GMT 0)
IRISH-TERRI - I'm glad to hear someone say my memory is fine LOL - usually I forget what I did yesterday LOL!!!

I don't consider myself constipated per se either, however, the MiraLAX keeps my stools on the watery/very soft side.  If I go without taking it for a day or so (if I plan on being away from home) it really throws things off and I end up miserable for days at a time until I get the MiraLAX working again.  Regarding the Bentyl, well it doesn't really help me along the lines of moving things, but it does help with the discomfort/pain/bloating I experience.  The doctor did tell me that he has patients where the Bentyl has helped them to move things along (those who no longer have a colon for various reasons or ileostomy).

AMEY - I hope taking half a dose of the Bentyl helps you without causing too many of the side effects you dislike.  If 10mg still causes the side effects you dislike maybe you could have the 10mg - it's just a thought.  I look forward to see what the GI specialist has to say so please keep us posted!!!     

Posted 11/17/2007 10:15 AM (GMT 0)

Robin

I still have an old bottle of Miralax laying around. I might give it a try on Sunday. One thing I have found that does work is something called Senna Prompt. It's an over-the-counter thing that my GI told me about. I had tried it before the colectomy but it didn't do much. I have tried it since the surgery and it 'usually' gives me relief. I like it because it makes things mushy enough to get out but doesn't give you liquid stools.

Posted 11/17/2007 12:45 PM (GMT 0)
TERRI - Thanks for the information on the Senna Prompt - I've never heard of it.  MiraLAX is now OTC just in case you didn't know that.  Depending on how long it's been since your last bm before trying the MiraLAX, it may take a day or two, however, if used consistantly it generally gives me a bm once/twice a day, if not, every other day.

In the beginning when I was put back on the MiraLAX I was a bit discouraged - I was hoping that I would NEVER have to take SOMETHING to help/keep me moving, however, my insight has changed considerably since then.  I look back pre-op when NOTHING worked (I was taking several things at one time with absolutely NO success) then I'm thankful if putting a capful of MiraLAX in my coffee each day will moves things right along - I'll take it!!!!!  I sort of felt the same way when the Bentyl was added, but then again, if it helps me I'm thankful for it as well.

Looking outside of the box now - seeing how I lived for 43 years - miserable, toxic, going once a month if lucky - I'm very thankful I had the TC.  Things could have turned on a dime, like in Amey's case, and I realize there were NO promises going into the surgery and how lucky I really am AND I'm still a success story.  I'm truly very, very thankful!!!

  

Posted 11/17/2007 3:49 PM (GMT 0)

Robin

We sound so much alike at times that it's scary. I too was hoping that I would never have to take anything again, but again thinking like you, if I can get away with just having to take Miralax, I'll take it! Since it (and many others) didn't work before, I'll be excited if it can do the job.

Resa

It's great hearing from you again! I again want to thank you for visiting me in the hospital when I was there. That was so sweet of you.

I'm happy to hear that you continue to do well. What kind of juice helps you the most? I've tried several, including prune, and nada.

Either way, I would do the surgery again in a heartbeat. This is just a temporary setback.

Posted 11/18/2007 12:25 PM (GMT 0)
Hi Everyone,

Irish mom - Basically I just drink apple/OJ, or OJ/Green Tea, or apple/OJ/Green tea. On rare occasion I mix 2 ounces of prune in with the juice mixtures but I have to be careful how much and how often I add the prune juice. I do not drink these juice mixtures every day. This morning all I drank was a cup of regular coffee and I had very watery stools. But it is okay, I really do not mind.

It was also nice meeting you. I enjoyed going to the hospital and visiting with you. I just wish meeting you was under better circumstances.

Hope everyone is having a great weekend. Mine is busy doing painting and hanging curtains and such.
Posted 11/18/2007 4:35 PM (GMT 0)
Resa

Thanks for the ideas. I'm confused (easy for me); do you mix the juices or drink them by themselves? I've tried plain prune juice but it doesn't do anything. My son told me to try guarana. He drinks something called Bawlz (enery drink) and it makes him go because of the guarana.

Posted 11/18/2007 5:07 PM (GMT 0)
TERRI - Yes, we do sound so much alike it's scary AND I would have this surgery again in a heartbeat!!!  I've done the Mott's apple juice and Welsh's grape juice and they do work well.  Another thing to try is sugar free chocolate (Dove dark is my favorite).  For me personally the MiraLAX is best without all the calories.  Just do a trial by error type of method and see what works for you.

RESA - Nice seeing you post!!  Thanks for all the great info!! 

Posted 11/19/2007 4:58 AM (GMT 0)

Hi everyone- I need some help. I am going in for a colonoscopy on Wed., which to me is really no big deal as far as the procedure is concerned, but I have been experiencing some pretty bad bleeding over the last few weeks. Has anyone else had a problem with this after their TC? They are going in to check my anastomosis and make sure the connection has not detatched, and they are looking at my internal hemorrhoids. I am hoping and praying that it is the latter of the two. Has anyone else had roid problems after surgery? My surgeon is saying that I am going to have another procedure and have them taken out due to only having one BM a day. He seems to think that it may be blocking my stool. I have the urge but I about die when I try and push, and it definitely won't come about on its own. After reading some of the posts it seems so minor compared to what many of you are going through, I feel rather foolish, but if anyone can spread a little light I would appreciate it. Hope you all have a wonderful week.

Posted 11/19/2007 3:40 PM (GMT 0)
Hi Everyone,

Irish - I mix the juices together. about 2 to 3 oz of each.

I have been having one thing happen the last couple of weeks. When I do have a BM mucus comes out. Is that happening to anyone else? Not sure if I should be concerned or not. It just started like I said a couple of weeks ago.
Posted 11/20/2007 12:29 AM (GMT 0)
Resa,

I did not have this problem when I had my TC and I drank a lot of juice with my TC.  Are you passing mucus without having a BM or are passing musuc alone?  Having some mucus build-up in the rectum is normal; however, if your having a lot for a long period of time, you need to contact your Dr. 

Stuck,

I have been taking Bentyl for 3 days and I believe that it is helping!  My stomach is not distended and I can eat more than I did before....that is a huge help.  I still get light-headed and dizzy when I put the pill in half.  I am hoping that these side effects are temporary.  I cannot teach fitness classes while my brain feels like it is in a fog.  I am going to stick with the medicine for a couple weeks just to make sure that the changes I am experiencing are not just a coincidence.

Posted 11/20/2007 12:10 PM (GMT 0)
AJ - First, I wish you well with your colonoscopy Wednesday.  Secondly, I too have internal hemorrhoids, however, they don't bother me at all (thankfully).  I think that checking the anastomosis is the first thing they start looking at when problems having bm's after the TC occur (as you've read here lately).  I wish I had more answers for you and I'm sorry I can't be of help.  Hopefully someone can chime in that's had internal hemorrhoids removed after their TC.  I'm sure you're like the rest of us and having another surgery isn't something we want nor look forward to.  Please keep us posted!!

AMEY - Glad to hear the Bentyl seems to be helping out.  Hopefully with continued use the dizziness and light-headedness will decrease, however, if it gets too bothersome try halving the half of one of the pills (hope that makes sense).  I find that the Bentyl has also helped with my stomach not being so distended - which is a plus!!!  For me personally, with time, the side effects of being tired and "foggy" have decreased and I hope it does the same for you!!!

RESA - I don't have any answers for you regarding the mucus - I've not had that issue at all.  Like I said to AJ - hopefully someone can chime in who's had this happen to them.

I hope everyone else is doing good - we love hearing from all of you!!! 

Posted 11/21/2007 3:59 PM (GMT 0)
So the surgery has been scheduled. The day is Jan 28. I have my defecography (It showed a very minute retrocele and slow emptying) and the anal manometry (this was normal). I met with the surgeon and we decided that we would schedule it(his reccommendation and i agreed) after my vacation in Jan. I am nervous, but ready. Some of the posts on here make me nervous becuase many of you are still suffering complications, but this is something I am willing to risk. I keep gaining weight and i do not understand why? I have switched to an almost full liquid diet becuase I cannot tolerate anything else without extreme pain.

Did any of you notice weight gain before your surgery or while dealing with the constipation. My surgon said that since I am "thin" ( so he thinks) that he will be doing a hand assisted laprascopic total colectomy. Although I am a nurse I am still nervous for this surgery. I have never been under for anything(besides with conscious sedation) and I have never endured pain before. Since I work 13 hr shifts on a very demanding childrens cancer floor how long do you think it will take me to be back at wok? This allis so real now.
Posted 11/21/2007 10:00 PM (GMT 0)
Xtreme - I'm sorry if you've posted here before I've just fogotten (which isn't unusual for me LOL) WELCOME!!  As you've seen on the many posts - each person has dealt differently with the immediate outcome, as well as, changes within the first year post-op.

I think honesty is the best policy and there is NO sugarcoating this surgery.  It's a HUGE surgery and each person is different in their recovery process.  It's easy to think that because we suffer with the same problems pre-op that our post-op will be similar but unfortunately that's not the case.  There are those that recovery was not as hard and long as others and they were back on their feet and back to work within a minimal period of time (four to six weeks). 

I don't want to say anything to scare you, it's not my intention, but I felt like I was ran over by a truck and it was a good 12 weeks before I felt better but 16 weeks before I really felt back to normal.  I was told that it take our body a year to really heal and for the small intestine to fully realize it's our new way of transit. 

Yes, there are those of us who've had some "issues" or "set backs" along the road of recovery, HOWEVER, I'm thankful that I had the surgery and would do it all over again in a heartbeat!!  I think there are others here that feel the exact same way I do.  I gained a life that I never knew existed because I suffered with constipation my ENTIRE life (43 years).  I knew going into this that there are no promises but was willing to take the risk, which has paid off regardless of a few problems.

Prior to surgery I looked nine months pregnant and was miserable.  My surgery was done laparoscopic and took eight and a half hours with five and a half feet of colon removed.  It's usually a three to four hour surgery - I just had to be difficult LOL!  I was in the hospital for four days and up and moving within 12 hours of surgery.  It's important that you get up and moving as soon as you can and as often as you can.  Oh, it wasn't real easy by any means, but it will shorten your hospital stay and get things moving sooner.  For the life of me I couldn't sleep during my hospital stay so I was up at all hours of the night and day walking the halls (slowly but surely).

I hope I was able to shed "some" light for you, hopefully without scaring you as it's not my intention - just honest!!  As a nurse you know they have great medications for pain and will keep you as comfortable as they possibly can.

Please keep us posted!!!!       

Posted 11/21/2007 10:08 PM (GMT 0)
I hope everyone has a great Thanksgiving day - spending it with loved ones and friends!!!  God bless each one of you!!!!
Posted 11/21/2007 11:44 PM (GMT 0)

Xtreme,

I just wanted to wish you the best... I have CD so I won't be able to contribute anything to this post.  It's ok to be nervous when you have a surgery pending like you do.  I don't think that you would be human if you weren't.  Just know that the folks here on this board are very caring and compassionate, so feel free to ask away.  I'm sure that someone will have an answer for you (maybe after the Thanksgiving holiday - the board's been pretty quiet the last couple of days!)

Posted 11/22/2007 1:58 AM (GMT 0)

Xtreme,

What type of surgery are you planning to have?  Although many of us still have some complications after surgery, the majority of us in this forum do not regret having the surgery.  Our quality of life has improved.  There are very few cures in medicine and I consider myself luck just to be able to enjoy a meal with my family or to have a bm without a handful laxatives.  I truely believe that you will be gald that you had the surgery.  If you have any questions, please post them and I will try to answer your concerns to the best of my ability. 

 

Dear Ostomy Mates...

Have a wonderful Thanksgiving!  I am so excited to be able to EAT this year!  I have not been able to enjoy Thanksgiving dinner in over 8 years.  I know I cannot "pig out" but at least I can enjoy a nice meal!

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