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Total Colectomy Part 11

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Posted 6/28/2006 2:41 AM (GMT 0)

Phyllis-

Glad to hear you're doing well.  Don't rush yourself and listen to your body.  Each day you're going to feel better in some way.  Look for the positives, don't dwell on the negatives.  Have a safe trip home.

Cathy

Posted 6/28/2006 8:49 PM (GMT 0)
Hi Phyllis,  I have been wondering about you and how everything went.  I hope you are feeling stronger every day.  When you feel like it,  write and let me know how everything went! 
Posted 7/5/2006 1:28 AM (GMT 0)

Hi Everyone,

Each day I get better and better...Out of the blue the surgeon called me on Monday...can you imagine...It is hard enough to have a doctor return a call let alone just call to see how I was doing...Even though the trip home was a bit rough at times...so glad I went to the Cleveland Clinic..

I am no longer taking anything for pain...the aches come and go...I guess that is stuff moving like gas...I'll go a few times and then things settle and then I'll go some more...Right now I am not complaining because it just feels so good to go as compared to prior to surgery..The surgeon did say however that when I was ready he will advise me how to slow things down to 2-3 times a day...

Still on soft diet which isn't bad...that will be for 6 weeks and then I can eat anything....

Just when they were doing the IV's etc..I told my husband in a bit of panic that I hoped I was doing the right thing..having the colon removed is quite radical but I just couldn't go on the way I was...

So far I have absolutely no regrets....

Hope everyone out there is enjoying the holiday...take care and be well...

Phyllis

Posted 7/6/2006 5:58 AM (GMT 0)
Hi Everyone,

I know this topic has been discussed previously, but since it is such a fun one, I thought I might go there again. eyes   Actually, I was just wanting to get some info on when my bowel movements will be a bit more formed.  I had the total on May 16th, and even though I feel great, I find that I can no longer "just go pee."  I may feel at the time like I am just going to the restroom to pee, but inevitably, I will also have a bowel movement.  TMI, I'm sure.  Anyone else in this boat??  Any suggestions? 

Posted 7/6/2006 3:46 PM (GMT 0)

hey guys,

Could use some help from Cathy or Emma or anyone else who knows what the doctor is talking about.  I had to call the surgeons office yesterday and they brought me in today.  I have alot of pain and pressure in the perineal area.  It feels just like it did when my sons head dropped in the vaginal area.  He did a rectal exam today. 

he said there was no impaction but there was loose stool sitting there.  He said the muscle harness that keeps all the organs from falling in the vaginal area is extremely tight. He said and look gentlemen this is the rectocele pulling on it and said its gone.  He was telling the resident doctor and the doctors assistant.  He finished his exam and told me to get dressed.  He said he would be back in a few minutes.  He told my husband he could come back in on his way out.  When he came back in he said that when they do this type of surgery they have no way of knowing what the out come will be.  He went back over the defcograghy and results and said the test shows that you have no problem with the empting of the lower rectum and there was a problem with the empting of the upper rectum. That it was no problem because he removed the upper rectum that they only need to keep the area that contains the spincter(spelling) muscle.  Now hes saying that he will not do anything until after 3 months is over from surgery.  Not to do any pushing to have a bowel movement and to start using a enema bag once a day to clear the entire rectum.  After my three months is up he will reorder the defocography and the anal monetry and we will go from there.  The doctors assisant when he was asking me questions and decided to have me see the surgeon thought I had herniated.  When I asked the surgeon about the rectocele he changed the subject and when I asked about if there was a hernia all he said was we really need to wait until you are three months out from surgery because the six weeks healing process never really started until after the wound had closed so he doesn't want to speculate until after my three months was over and he reran those two tests.  He then stressed not to push or satrain at all to have a bowel movement because I could push alot of things out.  He then told me to start doing light arobics doing alot of swimming and walking.  I asked about when will I be able to go back to work and he said he will let me try to go back in a month if it is to much he will pull me back out.  My concern is I am a CNA at a Nursing home and I do alot of heavy lifting.  Right now he has me scheduled to go back August 7th without seeing him again.

Cathy or Emma can you clue me into what maybe going on.  This has me a little concerned and hes not wanting to tell me anything until after my three months is up.  I'm really concern about him really stressing don't do any pushing at all to go and to use a tap water enema to clear the rectum.  I feel like now there is a problem hes not telling me about.  The doctors assistant came in just before we left to give me the note to return to work and the last thing he said was if your in too much pain you can't handle go to the emergency room.  Any help or suggestions anyone can help me with would be appreciated.

The surgeon also told me to resist the urge to go.  To try to hold it until I get to the point of stool seeping out.

Mary

Posted 7/11/2006 2:02 AM (GMT 0)

Hello Everyone,

I have been reading Total Colectomy from Part I, and have been learning a lot so far. What incredible ladies have been on this board!!!   First, I would like to know how those ladies are doing now, a year later. I see most of them don't post here anymore. I'm taking it that's a good sign?  I hope they're all doing wonderfully.

Anyway, I have a ton more reading to do, but in the meantime I wanted to introduce myself and see if anyone can relate to the symptoms I have such as severe fatigue/weakness  as well as trapped gas and foul liquid whenever I take a laxative to try to move my bowels, even Miralax.  I posted some of the following recently on this board, but not in this particular thread, so thought I'd post it here and see if I get more feedback.  I haven't had any testing yet to make sure I have Colonic Inertia, but plan to as soon as my husband gets insurance, which won't be until late fall.

Here's my story:  I have been constipated all my life (I'm 36), except for about 10 years ago when I was diagnosed with IBS b/c of alternating diarrhea for awhile.  But then that stopped and I had constipation only.  Fiber products used to work for me, but then stopped.  So about 5 years ago, I started taking herbal supplements to "move" me because all the advertisements said they were safe and nonaddicting.  Well, over less than a year, even those stopped working for me.  So I tried colonics, and while that helped empty me out of a lot of junk that had been in me for who knows how long, it did nothing for my problem.  So then I tried epsom salts, which also worked for awhile then stopped.   

Now, nothing seems to work right. I take magnesium b/c that's the only thing that gets anything out of me at all.  But what happens is, it turns everything to liquid in me and sloshes around like a water bottle, unable to come out like it should.  I have hard feces stuck in my rectal area at the same time.  And LOTS of gas.  The liquid in me is really foul (sorry to be gross), and makes me feel really ill with fatigue.  The liquid stays trapped in me, and at the same time I pass small amounts of it a ton of times throughout the day.  If I don't take anything, I don't go for weeks, except maybe small 'rabbit pellets'.  I hope all this makes sense? 

I saw a gastro doctor last year who did a colonoscopy and said I simply had IBS, and gave me Miralax.  But that didn't help. In fact, when I did the preparation for the colonoscopy with the Miralax, I had major trouble getting that out, and had to do a bunch of enemas, which as usual also got stuck in me and came out slowly a ton of times that night. By the way, the doctor said my entire colon was black from use of herbal laxatives.  

Did any of you have these problems before you had surgery?  If so, how are you feeling now in comparison? Any input would be very much appreciated!

Thanks again, so much.

Kim  tongue    


Post Edited (KAP) : 7/11/2006 12:14:53 PM (GMT-6)

Posted 7/14/2006 2:21 AM (GMT 0)

Hey everyone!

I haven't posted in awhile, have had lots going on at work.  I'm glad to hear everyone continues to do well.  I hope everyone who is "fresh" from surgery is doing well and feeling better.  I know exactly how you guys feel, recovery isn't easy- but it is SOOOO worth it!! yeah

Emma, how are things?  Cathy, how are you doing?  Well and good I hope.

I am still so glad that I had my surgery, I can still say I have never felt better. 

Kap, I had my surgery in February, 2005.  I think all of our pre-surgery stories are about the same.  I wouldn't have a BM for weeks sometimes.  I guess I was slightly different, b/c when I would finally have a BM (after all the cramping and waiting and sitting on the toilet praying) I would have severe diarrhea.  Doesn't really make any sense, but that's what I had.  I just knew my surgeon would think I was totally bonkers when I told him, but luckily- he was very understanding!

~Somer

Post Edited (Somer) : 7/13/2006 8:23:44 PM (GMT-6)

Posted 7/15/2006 3:51 PM (GMT 0)
Hi Ladies/Gents
Seems like everyone has disappeared - where have all the people gone? I hope doing fine and are out enjoying their lives. To Cathy, Zoe, Amira, Somer, Kelly, Emmaleigh, and everyone else thank you for all the valuable information you have provided on this forum. Those of you who are post-op by 6-12 months is everything still moving, have things slowed down abnormally, etc.?
KAP - I also took colonics for about 3 months in the 90's. The colonic specialist made me stop because she said if it was going to work it would have by that time. The colonics only cleaned me out but did nothing to fix the underlying problem. I also did head bump massage. Again that worked after each treatment but did nothing to fix the problem. about six months ago I started chiropractic care. It is helping my back pain, but not the constipation. After 20 years of trying everything I can think of and not working or stopping after a short period of time, I have given up on finding "The Cure."
I went to see the colon and rectal surgeon at my healthcare facility. He is willing to do the surgery, which shocked me because they never want to do anything, but asked that I try to get a manometry done first. He checked my butt muscles out. How embarassing that was. He had me kneel on a table stand with my body over the table. He turned the table in the down position so my butt stuck up in the air. He then proceeded to stick his finger up and had me do all these muscle contractions. He said the muscles are fine. He only found a little weakness. I asked about the bag and he said he could not promise there would be no bag because something could happen but he said the chances were very low about a 2-5% but he legally had to let me know. He also said I would have to sign a release form stating I had been informed. I also asked about the NG tube. He said he did not use those. He said only about 15% of patients need one and he would not make 100% of his patients use one based on the 15%. He said if it was needed he would insert it after surgery. He said this surgery helps about 90% of patients. I also questioned my age (55) for complications and he said that was no big problem because I am in good health otherwise. I do not know if I can live with a bag, but I do know I cannot live this way any longer so it is a risk I will have to take in order to feel better, but I will hope for the best.
Anyway, I also have an appointment with the surgeon at the VA hospital on 7/20/06 to schedule surgery. I will again talk to him. I can then decide which hospital and surgeon I want to go with. I know I will do the surgery just trying to decide on the surgeon and facility.
Thank you all for listening to me. I'll keep you all informed.
Posted 7/15/2006 7:29 PM (GMT 0)
Hi everyone.  I am now 8 weeks post subtotal colectomy and 7 weeks post hernia repair/small bowel obstruction.  I have been suffering with horrific abdominal cramps for the past week.  I ended up in the ER earlier this week and was referred to gastro.  I finally was able to see the gastro yesterday and was given Bentyl and Reglan.  Has anyone else had this type of severe colic/cramps?  Did anything help?  I'm not sure what caused this or if I just pissed it off somehow and haven't figured out yet what I've done.  Any input would be greatly appreciated.
Posted 7/16/2006 3:41 PM (GMT 0)
Hello Everyone,

I have been reading from this forum for a while and I am so glad that many of you are doing well.  I have a couple questions and I would appreciate any help or advice...thank you in advance.

I am 32 and I had a total colectomy (I still have about 6-9" of colon left) about 2.5 weeks ago.  I have noticed a couple of problems that give me concern. For one, I cannot eat often or very much and the dr is getting frustrated that I am not eatting 3x per day.  When I eat (not matter if it is half an apple or one egg), I get very extended in my stomach and the distention lasts for about 6 hours until I have a BM. It is very uncomfortable.  I drink about 70-80 oz of water a day.  I am allergic to wheat so I do not eat pasta or bread.  I try to eat beans for fiber for lunch and an apple for breakfast.  These two items are all I can eat in one day because of the discomfort and distention. 

Also, my bowels are very hard to move.  They are not hard in consistancy, they are thick and paste like. 

My dr says I need to eat more food so I can go to the bathroom more than once a day.  However, I cannot eat when I am bloated and having stomach cramps.  ACCKK!

Any suggestions?  I truly appreciate ANY and ALL comments.

Best Wishes,

Amey

PS.  I do walk 3-4 miles per day. I am a fitness instructor and I am trying to keep my legs in shape.

Posted 7/16/2006 4:32 PM (GMT 0)

Hi Amey

I am 4 weeks post surgery..I was told to be on a soft diet for 6 to 8 weeks.I was also told that I do not need to eat fiber.  Beans in particular are gas producing.  Has your doctor given you a diet to follow?  I was also told no raw fruit in the beginning that I could have apple sauce or canned peaches.

Posted 7/16/2006 4:42 PM (GMT 0)
Phyllis,

WOW!  Thank you for the information.  My Dr did NOT give me a diet.  However, he did tell me not to eat veggies because they can cause bloating.  Can you please tell me some foods that you have found that work well for you?

Thank you immensely for your reply.  I sounds like I may be making a few mistakes that I would like to correct right away!

Amey

Posted 7/16/2006 5:57 PM (GMT 0)

Hi Amey

I grabbed a soft diet menu from hospital prior to discharge...so here goes..You will have to eliminate the wheat things..

Rice krispies, cheerios, cornflakes, puffed rice, grits, scrambled eggs, french toast and pancakes with syrup.

Chicken, baked fish, turkey, mac and cheese, pizza, hamburger, lowfat cottage cheese, peanut butter and jelly sandwhiches.

salmon, tuna, talipia.

Mashed potatoes, rice, pasta

custard, pudding, applesause, pound cake, canned peaches, canned pears ice cream, sherbert fruit ices...

This is just some to get you started...it is a wide variety...I would go easy on the red meat.

I was told no carbonated beverages but I am a soda addict so I let it go flat...

The surgeon was very specific without explanation not to have any caffenated beverages.

I am also supposed to eat 6 small meals a day but usually have only 2 which I have to get better at having a little more....

This is trial and error...you will know if a food doesn't agree with you...

Also walking may be of some help...

Good luck

Phyllis

Posted 7/17/2006 1:13 AM (GMT 0)
Thanks Again Phyllis, I googled "soft diet" and printed a long list of items.  I am hoping that I have not developed adhesions.  I had 1/2 cup of soft pasta (brown rice pasta - wheat free) about 10am and 2 ounces of Tilapia about 4pm and I still have not had a BM.  I had 70 oz of water and I walked 4 miles about 7 tonight.  My Dr asked me to eat 2 fiber wafers every morning as well. If I have formed adhesions, I will need to have another surgery.  ACCK!!! I do not want to have another surgery so soon after my total colectomy!  I was in the hospital for 9 days and I could not wait to get home.  I have only been home for a week and 4 days.  

 

I will try to con't a soft diet and see if my BM habits improve and the bloating decreases.

 

Amey

Posted 7/17/2006 4:29 AM (GMT 0)

hello everyone, hope all is well.  I had surgery on 31 Jan 06.  My surgeon told me that the six month mark would determine usually how things would be from then on.  I was having 4-5 bm daily, but the last week I have started bloating and kinda being a bit uncomfortable.  Today I even had a hard stool.  This is concerning me as my six month mark will be on 31 Jul.  I don't drink water and I do better eating chicken, pasta, french fries, breads, etc.  I have not had to take any lomotil since 23 Mar.  I am just concerned that things are slowing down.  I have been adding some vegetables (very small amount) and was wondering if that was making the bloating.  Up to this point it has been wonderful.  I do still have soreness deep inside, like when I cough I feel like my insides are coming out through my V.  When I start to get up from a sitting down position, it feels the same way and if gas is trapped and I cannot expell it, I get the same feeling.  Suggestions about the bloating, hard stool and tenderness? 

I am still so glad I had the surgery and would do it again tomorrow and I was one of those who had the NG tube for six days.

What causes slow motility of the small intesting and how much can be removed is the need be?

Posted 7/17/2006 1:41 PM (GMT 0)
Nonna,

 

I have no expert opinion but it sounds to me that you need more water in your diet.  What do you drink during the day for hydration?  Even if you add crystal light or a little lemon to your water, try to drink at least 64 ounces per day.  It puzzles me that you can pass breads and pastas through your system without water.  You may want to add apple juice as well or even a little extra fiber.  I have to eat 2 fiber wafers every afternoon with about 20 ounces of water.  I have seen a huge difference in the consistancy of my stool.

 

I hope this helps.

 

Good luck...please post when things get better.

Posted 7/17/2006 7:35 PM (GMT 0)
Hello all

I am new to the website. I am looking for some advice and I really hope some of you can provide it. I have had chronic constipation since my teenage years. I am 33 next month. The constipation was "manageable" until my husband got very ill with cancer and I think the combination of the worry and stress of my work plus not eating well made it a lot worse and it changed from manageable to very problematic (lots of bloating, gas, migraines, weight gain, etc etc). I was very young then and busy and I never took the time to investigate natural options or anything like that and I started taking senna laxatives until they stopped working. By accident I stumbled upon a book about nutrition and that together with visiting a naturalist nutriotionist my bowels started working again. However after a while (1 year) and even with a VERY good diet, lots of water, rest, new job, healthy husband, etc etc my bowels have slowly stopped working. I have had the markers tests and also the muscle tests. The markers test showed idiopatic constipation and the muscle ones showed that I needed biofeedback. The colorectal doctor has told me to take movicol and to get biofeedback.
My question is, did any of you take the movicol and do the biofeedback? Could you share your experience with me with these two things?
My Dr said that the other option was surgery (colectomy) but that it wasn't completely successful. he didn't want to go into details as he wants me to try the other two things first.
I feel very depressed because I am gaining a lot of weight, feel very lethargic and feel that my life revolves around having (or more often than not in NOT having!) a BM
I appreciate any advice you can give me
Thanks
Ioke
Posted 7/17/2006 8:11 PM (GMT 0)
My Dr has elected that I also attempt biofeedback.  I had 2 appts before my surgery and found them to be very helpful.  However, since I am now 2 weeks post-surgery, I have had to discontinue my appts until I can drive great distances again.  I look forward to returning.  I learned a lot about myself and that I make many common mistakes when I use the bathroom.  Here are a few 1. I hold my breath when I strain to have a BM 2. Your knees are suppose to be slightly higher than your pelvic to put more pressure on your rectum (buy a small footstool or use books) 3. While on the toilet, relax your bellly and even push it out a little (Since I teach fitness classes, I alway hold my abdominals in and forget to relax them) 4. Take deep relaxing breaths - feel your diaphram move up and down as if you are in Yoga or practicing meditation. 

 

That is what I learned at my appts and I have been finding this info to be helpful.  In future appts, I will have biofeedback sensors placed on my bottom which are connected to a computer.  The computer will show when I am truly relaxed and when I am pushing against myself in the wrong manner.  Once I know how to relax my rectum, I can practice at home. 

 

I hope this helps.  If you want to practice a little at home, put some soft instrumental music on while you are on the toilet and try breathing and relaxing so you know how it feels to relax yourself and try to stay that way for as long as you can.  Also, a good book never hurts. I get most of my novels read on the toliet...GIGGLE...

 

Best of luck,

Amey

Posted 7/17/2006 8:35 PM (GMT 0)
Thanks very much Amey. This is very helpful. I make all those mistakes as well. I was also told about the biofeedback sensors and will give that a try too. I am still hopeful that with the biofeedback and the movicol I won't have to have surgery.
Thanks again and I hope you have a fast recovery
Ioke
Posted 7/19/2006 2:45 AM (GMT 0)
Hi everyone,  Just checking in!  I hope you are all doing well.  I actually have never felt better since my surgery!  Nonna, dont know about the 6 month thing.  My dr's all told me that I would pretty much know right away if it was going to work or not, but I wanted to tell you thak drinking a glass of Welch's grape juice every morning REALLY makes a big difference.  It cant be the light kind unfortunately, because that isnt 100% juice.  I dont like the extra calories, but it works really well!!   Let me know how it works if any of you decide to try it! 
Posted 7/19/2006 9:30 PM (GMT 0)
What about prune juice? Has anyone found this to be beneficial or problematic?

Thanks,

Amey

 

Posted 7/21/2006 12:32 PM (GMT 0)

I have a permanent colostomy, 5 months old yesterday, as a result of rectal cancer.  I eat any/everything I did before surgery.  Pigging out on fresh cantalope wasn't a good idea, moved itself along Really fast! - a smaller portion would have been better, but it was soooo good. 

Hot tea/coffee should shift an intestinal blockage.  A glass of warm prune juice followed by hot coffee is supposed to clear most any food blockage.  If that doesn't work, it's likely a physical blockage ie: kink or stricture, and requires medical attention.  I've not had a problem (yet) but these would be my first actions towards relief.

:-)   Martha

Posted 7/21/2006 1:37 PM (GMT 0)
Hi,
Amey - I was under the impression that a doctor would send a person to biofeedback to see if it worked in order NOT to have the surgery. If the biofeedback was working why did you go ahead with the surgery???? Just curious.
I read an article on the Internet that pointed out that the best position to be in to have a BM is a Squat position.
I went to my other surgeon yesterday. The doctor did not schedule me. On his list of questions he asked me about chest pain. I stated I get intermittent pain. Comes whenever. Last for about 1-3 minutes then goes away. He decided before he schedules me he wants me to have a P-Thal. They will inject radioactive dye into my veins to check things out.
Hope everyone is doing fine today.
Posted 7/21/2006 4:21 PM (GMT 0)

Resa,

Biofeedback has many benefits.  Although I had a colectomy 3 weeks ago, it is also important to make sure I can move my stools properly. I had the colectomy because my lg intestines did not have the motility needed to move my stools.  How that I can move them, my Dr wants to make sure that I can push them out pushing improperly.  If I only had a rectal issue, as many women do, and not an intestinal issue, I would not have needed the colectomy. It is better to be conservative and attempt the biofeedback before surgery.  Unfortunately, this was not a viable option for me.

Thanks for asking..good luck yeah

I hope this helps.

Amey

Posted 7/21/2006 7:18 PM (GMT 0)
Resa, What is a P-thal test? What exactly are they wanting to test for? Bless your heart, I know you must just want to get on with finding out when your surgery will be!  Sounds like you've been through a lot, like me, in trying to find the "cure" to your constipation problem.  Have you been checked also for pelvic hernia/rectocele?  I've learned A LOT reading a rectal doctor's website online.  His name is Dr. Christopher Lahr and he's in South Carolina.  I'm seriously considering seeing him when I'm ready to do tests, though I doubt my insurance would cover it since he's out of my state of coverage.... that figures.... . 

Anyway, he tests women for pelvic hernias while they're standing up, as opposed to most doctors who do it when you're lying down, and his surgery for that condition sounds a lot better than what the average docs do.  I want to make sure that whoever I go to is looking for EVERYTHING that might be wrong.  I'm pretty sure I have colonic inertia, but from his description of pelvic hernia, I'm almost positive I have that as well.

Have any of you been to Dr. Christopher Lahr, and if so, what did you think of him?

Somer, I'm so glad you're doing so much better after surgery.  You give me hope!!

Take care everyone!

 

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