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TOTAL COLECTOMY PART 19

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Posted 6/12/2008 12:43 PM (GMT 0)

Terri:  What were your symptoms of the hernia and were was your hernia?

Lizzie:  Still haven't heard back either.  I am calling around 10.  I know he is in surgery everyday but Monday and Friday but he could at least call me back!  I woke up this morning with period cramps...but I know it isn't that....it feels like period cramps but just really tight when I stretch...kwim?  Wow, eight times a day?  I have only gone once a day since my surgery, but it was a significant amount every am.  Yep, i was doing great with romain lettuce salads, but all of the sudden can't digest fiber, it makes me REALLY bloated and sick to my stomach.  AND, makes me even more constipated.  As soon as I wake up, I don't have the pain, but once the bowels start moving I guess, or lack of, I get the pain. 

I don't know about you, but this has really put a damper on my days...it makes me so depressed to think that I am not going to poop like a did....I am trying not to think about it, but how can we just ignore it?

Have you been passing gas as much?  I haven't...it takes FOREVER for it to come out.

Posted 6/12/2008 1:25 PM (GMT 0)
Doc just called.  He thinks I may have a partial bowel obstruction.  He is seeing me NEXT Friday and will be doing a scope.  What a great birthday present. 
Posted 6/12/2008 2:05 PM (GMT 0)

Mom- Happry birthday! I am glad you heard back....I still have not. It is very depressing....I agree. It consumes my day and thoughts. Let me know how your scop goes. Should I call my surgeon again today or is that too much? His nurse is so cranky though!

Posted 6/12/2008 2:36 PM (GMT 0)

Lizzie

If you're anastomosis has narrowed or hasn't opened, you have to have the dilatation done. That's the only thing to do. We have found out where my main problems are - it's higher up. When I had my resection done about three years ago the nerves/muscles were damaged so I can't even get my stool low enough for it to be able to get into my rectum. That's why the dilatation only worked for a couple of days for me - it was because of stool that had dropped because of the prep. Don't let that worry you. I haven't actually started the biofeedback, so I can't tell you what the actual process is. It's basically to train you to relax certain muscles (retrain them) so that you can hopefully go. We'll see how it goes.

Mom

I'm assuming that you mean the most recent hernia. I've had three - an inguinal, a femoral (rare), and a ventral (incisional) hernia. The last one I had was a ventral hernia. I had a 'feeling' that something was there. When I'd lay down I could feel a lump and when I'd stand or sit up, it would pop out. I've had four laparotomies for ovarian remnant syndrome and it was basically a breakdown of that incisional area.

Posted 6/12/2008 5:54 PM (GMT 0)

I am going insane!!! As I sit here, I am feeling more and more sick.  I just gave myself a fleet enema and hardly any came back out.  My stomach is huge, I feel just like I did before when I had a partial obstruction, except this time, I feel like I am leaking something in there.  Of course, the surgeon told me to go to the ER.  You know what...I am sick and tired of going to the ER when all you have to do is order me a CT scan and a barium enema with contrast instead of me paying a boat load of money to go to the ER. 

I put myself on a clear liquid diet this morning, took 3 colace and have been drinking Miralax and nothing.  Can someone tell me...can your intestines explode?   Because that is what I feel like.  If you have a narrowing of the anastomosis, for whatever reason, wouldn't that cause you to have the seem symptoms as an obstruction?

Posted 6/12/2008 6:50 PM (GMT 0)

Mom-

So I finally heard from my surgeon and I too am having a flexible sigmoidoscopy to assess my anastamosis. They feel it is narrowed and YES it does act as an obstruction (he called it a pseudo-obstruction). and your bowel can perforate. I just had lunch and feel much worse than before. I am huge as well and have not had this since my surgery. I am going insane as well. I have so much swelling above my inscision.

lizzie

Posted 6/12/2008 7:11 PM (GMT 0)
I am drinking/eating all liquids.  When is he seeing you?  What did you eat for lunch?  Isn't this an emergency?  I mean if you bowel perforates, that means the contents can leak out right?  OMG...I am freaking out. 
Posted 6/12/2008 7:15 PM (GMT 0)
Lizzie...do you have IM? I would love to chat with you.  I need some comfort :)  I am worried sick. 

Posted 6/12/2008 10:01 PM (GMT 0)

Hey Mom- SorryI did not get back earlier. I am a nurse myself and still at work. I am going in wednesday @ 7:30 am. That was the earliest I could get in because of work. I do not think I am at risk for perforating, but what I was saying is you certainly can perforate a bowel. I think it is good that you are doing clear liquids (just make sure your getting the calories you need lil one). I had some hummus and croutons and watermelon for lunch and I am still swollen nearly five hours later and bloated beyond belief. I tried several times to go to the bathroom and just cannot. I am so frustrated. I do not know if you have text on your phone, but you can text me anytime. My number is 616-446-4914. I am in Michigan. I am worried about you and hope WE can both get this figured out.

lizzie

Posted 6/12/2008 10:09 PM (GMT 0)
don't have text but my email is [email protected].  I started passing some clear liquids just a few minutes ago...a little reassuring that something is coming through.  My primary doc said HE is calling my surgeon tomorrow to see if he can get me in sooner...absolutely ridiculous that my surgeon is making me wait till the 20th.  So tell me what it is you are taking to move your bowels everyday.  Do you take gas-x...I live off that stuff.  I am so happy for you that you got in...still Wednesday sucks to wait that long.  I couldn't imagine being at work and having to deal with this...you are stronger person then I am. 

Posted 6/15/2008 9:47 PM (GMT 0)

I'm so sorry to hear several of you're having the problems you're having.  You're in my thoughts.  I too have had a few problems post-op, but nothing like these.  I did slow down considerably and now take MiraLAX daily in order to have a bm.  I believe it's due to me having a suspected "lazy" small intestine which wasn't discovered until after the TC.  I'm still working with my GI on this issue.

If your surgeon has recommended going to the ER I wouldn't hesitate to go.  It wouldn't be a good thing for your bowel to perforate - I'd rather be safe than sorry.

I wish all of you the best.

Posted 6/15/2008 11:05 PM (GMT 0)

Hi all!!

I haven't posted in a few days,so I just wanted to give you all an update on my daughter Takera...her s/x was 6/5/08...she had a TC,also removed most of her rectum,and a small peice of her small intestine. They then hooked her small intestine to the rest of her rectum...we are now playing the waiting game... :-) She does not have any bowell sounds yet...still has the NG tube w/ about 1 liter of output daily,still on the pCA pump for pain,trying to walk as much as we can,but hard because they did her s/x open..also started her on PN/LIPIDS because she is losing weight and not able to eat /drink anything... anyway just waiting and praying daily. Drs are a little concerned that they could not leave more of her rectum ...may cause incontinance when everything wakes up..or she may still not be able to go...Like I said its a waiting game now and just beliving that GOD has everything in controll no matter what it looks like w/ my natural ...

All of you that are having s/x this week you will be in my prayers...and remember no matter how it looks GOD is really in controll,and he has you all in the palm of hands!! yeah

In HIS Grip,

Krista & Takera

Posted 6/15/2008 11:46 PM (GMT 0)

KRISTA - I'm sorry to hear you're still playing the waiting game and for things to wake up for Takera.  Your daughter has sure been thru a lot in her short little life.  I'm sure that because of the fact she's not been able to eat or drink anything is playing a roll of things not waking up, not to mention the catch 22 of pain medications and the way they cause things not to move.  I'm sure it's difficult for her poor little body to get up and move after all she's been thru, but I do believe this is key in waking things up.

Keep your faith and keep believing God DOES have control over ALL of this.  Give Takera a big hug and here's one big (((((((HUG)))))) for you too!!!!

Posted 6/16/2008 3:28 AM (GMT 0)

Well my surgeon has decided to do a scope under sedation with possible dilation of my anastamosis wed at 7:30. I have stopped going all together. I put myself on a full liquid diet and this has helped a little. I have thrown up a couple times and have pain directly behind my long inscision. hopw i can get this figured out.

pray for mom2sophia too.....she goes in tomorrow. she has been dealing with the same type of issues as well.

frustrated,

lizzie

Posted 6/16/2008 7:00 PM (GMT 0)

I've been reading about all the problems, has anyone tried a icecream shake.  When I can't go I always go for the shake, it takes about a hour and I start hearing my stomach doing that sound and then I'm in the bathroom for about 20 mins but it works.

I hope all the test come out with good news.

Posted 6/18/2008 12:22 PM (GMT 0)
Hi Resa,
She is up walking,even getting physical therapy...no she is not eating yet because Ng tube is still in and getting about 1 liter of return a day,and still has no bowell sounds,so drs say they have to keep tube in and no food.She is getting Pn/lipids through central line..she is getting a Gi series today,to make sure no blockage etc..Just a waiting game now...Talk soon!!

Krista (Booka)
Posted 6/18/2008 12:22 PM (GMT 0)
Hi dont know your story well, but 1 - 3 times a day sounds fantastic to me! The thing is do you feel well?
Posted 6/19/2008 4:43 AM (GMT 0)
Dear all,

it's me again. how's everyone?

I have quite a long time din come here. I'm very depressed and over upset until my stomach nowadays getting worse and worse day by day. My dad has just found that he has colorectal cancer and it is the last last critical stage(4th). I cried too much until i fainted in the ICU last Sat. Things happen too fast and i have no ideas at all.

The cancer cells have spread like carpet. It spread until it blocks both kidneys. Worst thing, right kidney has badly damaged, and now one of the doctors who specialist in consultant urologist has put 2 J Sterns inside his both kidneys temporarily. Besides that, he has done another major operation - colon surgery. A tumor has been removed from his upper rectum. Another doctor who specialist in colorectal surgery has cut some parts near the upper rectum and join a small bag outside of his body. He said it's very dangerous to join to the rectum as the cells on the rectum is very bad. Unluckily, the bad cancer cells near the rectum could not be removed and spread like carpet. This is also why his kidneys both have been blocked.

Doctor said is last critical stage. Few weeks later he needs to go for chemotherapy, by injection. He said if this doesn't stop the cancer cells spreading, he can die very soon, maybe 3 months later. If chemotherapy works for him, he can last for 9 months to 1 year . But a lot of side effects if he needs to go for chemotherapy.

I'm very depressed. Look at my Dad, i felt very pity on him. He is just 65 years old and just retired less than 4 months and now he faced a big problem. He always treats people very good and he is a good dad. He has many things not yet fulfil. It seems that colon sick is badly impact my family.

My dad is very weak and have high blood pressure. He used to have high blood pressure and on medicine since he was 30++. But recently his pressure keeps on going up to 190.

I really dont know why!!!
My dad always looks strong, he does not have any painful all the years. Doctor said the cancer has been started 2 years ago. But within these 2 years, he always looks fine and healthy. Big Shame on me is that he did mention to me that his pass motion habit has been changing from one time to few times per day since Feb. But i thought this is caused from the stress of his moving office. I did not really bring him to see doctor until he has bad headache for 3-4 days last 2 weeks. Then only a clinic doctor found a mass near his colon when he did a normal scan to him.

This is really a hidden cancer!!!! Why god so unfair to dad?
He just discharged from ICU, move to normal ward. I can see he is very suffering, headache, fever, coughing, painful. My heart breaks into pieces everytime i see my dad suffering. I wish the person who had cancer is ME, not HIM......

Im very bad luck... This year really not a good year for me. Bad things keep on happen on me. Im very stress.... Im worried of my mom too. Coz she cries everyday, every moment, think -ve, lost appetite, refuse to take food, drink, and have insomnia.... I must act stronger although my heart is very painful. Pray more. I might collapse one day... =(
Posted 6/19/2008 2:28 PM (GMT 0)

Resa

I'm glad that you're feeling better after being sick. I agree with what 2much said, one to three times a day sounds great. I remember that some of the folks here said that the amount of BM's would eventually slow down, so maybe this is your time to slow down. The average normal person goes from once a day to three times a week. Me personally, I'd be ecstatic but of course my situation is totally different. I'm still taking my daily double dose of lactulose and we're trying Amitiza again. Sometimes I go but sometimes I don't. I have now started biofeedback and if that doesn't work the next step is to go back in again and remove what's left. Keep your chin up!

Mimi

I'm so sorry to hear of your dad's diagnosis. The worsening of his blood pressure could be due to the kidney damage. My thoughts and prayers are with you and your family. I'm doing an American Cancer Society Relay for Life this weekend. I'll add a lumenaria for your dad if you can give me his name - first name is fine if you're more comfortable with that.

Posted 6/20/2008 12:11 AM (GMT 0)
Mimi,

I'm so sorry to hear about your dad.  I lost my dad to lung cancer several years ago and it's very hard to see your parent suffer.  Be postive though; doctors are not always right about how long a person has to live.  A good friend of mine was diagnosed with pancreatic cancer when she was 40, and only given 6 months to live.  She lived almost 7 years, and even though she was still very young when she died, she was able to see her kids graduate from high school, go to college and even to see one get married.  Just give your dad all the love you can and be brave.  I'll be praying for you and your family, as I'm sure everyone here will.

Terri--

How is the biofeedback going?  I have my 3rd appointment tomorrow.  I only go every 2 weeks, and I use my sensor at home and keep track of what I'm eating, drinking, etc.  So far I really haven't seen any improvement.  If I eat as much fiber as they tell me to, I have terrible stomach cramps. I still only have a bm if I take senna.  I'm not being real optomistic about this; I wonder if anyone has had any luck with biofeedback?

Janie

 

Posted 6/20/2008 10:31 AM (GMT 0)
Dear all,


Irish_Mom - My dad's name is Ah Theem. Yes i would appreciate if you could add a lumenaria for my dad. Many thanks.

Thanks Resa, Janiepain and everyone for your pray.

Talking about praying and Christianity, i felt very miserable.
I'm a Christian from methodist church. I always go to church every Sunday, worship, and attend church youth group, prayer meeting, etc. However i admit that im not a very strong believer. My dad and mom are free thinker.

Until my dad found out he has cancer in his upper rectum, i pray everyday for him, mom, and family. I hold his hand and pray. He told me he has opened his heart. But he afraid he cant go to church with me anymore.

It happened on last Monday, before we were told it is a cancer. Dad has done a lot of testing, CT Scan, Ultrasound, blood test, urine test, etc... he was admitted to hospital on last Tuesday. While waiting for result, we prayed hard together. He even told my mom that if he has no found cancer and discharged on Saturday, he would follow me to church, with mom as well. My dad never wants to go to church with me, but this time, different. On last Thursday, we all were so happy when doctor said there is no cancer found according to the previous testing and report. However they found that his both kidneys have been blocked and found mass near his colon. They were still on the way to find out the reason. So dad had another operation on last Friday. Dad never stops praying and feels thankful to God.

Until Friday afternoon, after they kidney operation, doctor gave us a bad news that he has colorectal cancer, that's why both kidneys are blocked as the cancer cells have badly spread it out. I rushed to hospital and hugged my dad. Dad cried sadly and kept on asking me WHY? Why god forsakes me since i already open my heart to believe in him? Why?

My heart was so painful when i heard it. I could not answer his question. :( I think a person who just open his heart to accept Jesus Christ, sure they have a lot of questions in their mind and their confidence is easily broken. especially in this situation. They can't accept the truth. :(

I will continue pray for dad. I really hope miracle could happen.

Dad never knows that his cancer has reached the last critical stage. We did not want him to know because we want to build his confidence and hopes to survive....

Do anyone of you know the ways to prevent cancer cells spreading?


- Deimy -
Posted 6/22/2008 1:07 AM (GMT 0)

Mimi

I did the lumenaria for your dad. I'm going back later tonight for that lap. It's 108 here and I got too darn hot, so I came home for a bit to cool off and take a shower.

Janie

I've only had the one appointment so far, so I haven't even done the sensor part yet. The therapist is great and I really like her. She basically did an exam and then put things that looked like EKG pads on my bottom. Then she hooked it up to a computer to see how I relax and contract. During the relaxing stage, I was registering a ten and she said that normal is one. We did a few 'exercises' and got that number down a little bit, but it was still way above normal. She said that she normally has people come in twice a week, but since I work at a doctor's office I'll be going once a week. I'll keep you updated on how things go.

Posted 6/22/2008 2:15 AM (GMT 0)
Terri,

Good luck with the biofeedback.  I have trouble with relaxing, too.  I can't get it much below 6, even after all my practicing!  Also, when my therapist hooks me up, I do really well on the squeezing part and she said I have good control, but I am totally messed up when it comes to pushing out.  It's pretty interesting, but I honestly don't see much improvement.  Are you keeping charts of your water, meals, fiber content and bms?  Keep me posted; I'd love to know how it works for you!

Janie

Posted 6/22/2008 10:40 PM (GMT 0)

Janie and Terri-

I had my scope last wed and my anastomosis is just great, but my surgeon wants me to start biofeedback therapy on July 2. I just got a new job and will be in between insurance....is it expensive without. I am hoping this helps me. I am doing ok with miralax or milk of mag once or twice a day, but everythin I go is watery and I feel like I am not emptying out. I also was told he thinks I may have gastroparesis and I have started reglan. I have been getting very full off very little food and bloated again. I vomit occasionally and all the food is undigested.....have any of you had issues with this. Should I just wait till August to start the feedback when my new insurance kicks in? I am so nervous I will never feel like I did two months ago.

lizzie

Posted 6/23/2008 3:01 AM (GMT 0)
Hello everyone - it's been a long time since I posted. I had my TC Jun 06 and things have been wonderful for the most part. However lately I had not been going to the bathroom but once a day and occassionally I skip a day. Of course I am reminded of life before the TC. Since my surgery I have become anemic and have to take B-12 shots. I don't have the energy I once had, but I can deal with all of that as long as I have BM's. Have any of you experienced a slowing in your BM since your TC. When I was going 5-7 times a day, I never felt bloated, sometimes now I do. Do you know of anything I can take?
Thanks,
Nonna
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