Total colectomy Part 15

SHELLYPOO/MICHELLE = Let us know how your appointment with the surgeon went.  I hope you have nothing but GOOD news to report!!!

Thanks for the info on the "gas" issue!  I really appreciate your input.  I'm just at a total loss as to what's going on with all the gas build up.  I'm sure soda can bring on gas due to the carbonation in it.  I'm not a real soda drinker to begin with, my choice is WATER 99% of the time, but I do have a soda about three times a week with dinner, however, it never bothered me before.  Then we come to the not eating and that causing gas.  Since I had surgery, when I know I'll be out and about, I will not eat until I get back home due to my "fear" of the public restrooms.

It really has only been a real issue for about three or four weeks.  When I do have those bouts - it is downright uncomfortable and painful and I stay tenderness in my entire stomach region for a few days (tenderness/discomfort).  I guess if it continues to be bothersome I will have to call the surgeon to see if this is normal (a part of the healing process where the small intestine takes on its full roll of the now gone colon).

Irish_Mom = I'm truly at a loss of words and don't know what to say regarding the findings of your colonoscopy - I just wish you the best in every situation.

Adviseseeker = Here again, I'm at a total loss of words and don't know the answer to your question, however, it is a great question.

Hopefully someone here will know the answer to it and then I'll be educated as well.

I hope everyone has a nice evening!!

It's way too early for me to be up but my tummy is hurting so bad. I had a grilled hamburger (I made them) and I'm wondering if it didn't do a number on me. All my pain is in the center of my belly, right under my incision. It's not crampy, just intense pain. I went to the bathroom, and yes, it was watery. I'm wondering if I still need to go but it's taking it's sweet time getting out. I hear water rushing around in there. I took 2 tylenol and some gas x. I am praying it will pass soon, oh the agony......
Thanks for letting me vent.

Hi everybody!

I had an appointment with a new motility doc(not  a surgeon but a gastroenterologist). He looked at all the tests and things that have been done to me and said that unfortunately, there is no cure for people like me. He said the main thing right now would be to optimize my nutritional status and (hopefully) get my weight up some more. I am very frustrated because I have had tons of people telling me that there is nothing that can help me. I mean, I am glad and thankful that he didn´t think that I was still anorexic(like most other docs do) but I just don´t want to live like this any longer. I have been sick with motility problems in all of my gut for the past 10 years. I am 22 now and my life isn´t what a life should be.

I asked the doctor specifically about surgery for the colon but he told me this is only done in people whose colon isn´t working, but not in people like me whose colon AND small intestine AND stomach aren´t working. I knew he wouldn´t like the thought of surgery because he is a gastroenterologist and they always seem to put you onhold, telling you to try out this new medication, or give this another shot, or try this strategy...I am really at the end...

Anyway, just needed to share my thoughts. Thanks for listening and hope everybody is doing well!

Hi all,

Well I have some 'kind of' good news I think. Once again while I was at work today, I started running another temp and the dreaded pain came back. I called my GI doc and he was going to call me back. I just missed him when I got home, but I did end up talking to him this evening. He said that my ascending and transverse colon are okay, it's my descending that's a mess. He said that it's swollen due to having chronic diverticulitis. That's why I keep getting the pain and temp whenever I stop the antibiotics. He said that he thinks I can get away with having a left hemicolectomy done. So instead of losing the entire colon, I'll lose about half. He said that surgery time, time in the hospital, and recovery time is the same but that he thinks it will give me the relief I need.

DANAALBERTINE - My heart goes out to you - I'm sure you do feel hopeless, but please don't give up.  You're so young and have a long life ahead of you.  Don't give up on your search - you WILL find someone willing to take on your situation.  I lost a lot of my "life" because so many doctors have no idea what to do when in comes to constipation.  They want us to take this, take that, never realizing that the issue goes deeper than "just" constipation, not to mention, how deadly it is to carry and retain all these toxins within us.

Please pray about the situation and have faith that God will come thru and bring someone your way to take over your situation.

IRISH_MOM - Wow, it does sound like "good" news.  How amazing to find out what's going on so fast after having the colonoscopy!!  Do you have surgery scheduled? 

TYBLOSSOM - Thanks for your thoughts and suggestions.  My surger was done 11-09-06.  So, I'm pretty for out post-op. 

SHELLYPOO - So sorry to hear you had a bout of pain and discomfort.  How are you feeling now - I hope for you, BETTER!!!

I also hope everyone else is doing good - my thoughts are with each of you!! 

Stuck/Resa

I know Robin was wondering how I got the results of my colonoscopy so quickly. I'm the coder/biller for my PCP's office and we send quite a few patients to my GI doc. We also send a lot to the Bay Area, but I chose to go to a doc that's closer to home. My doc/boss just called their office and said that he wanted to talk to him. It's nice having that 'in' if you know what I mean. There has been a bit more of a change. After speaking with a couple of surgeons, the decision is to remove everything but about four to six inches. Now the decision for me is to have it done in my area where it will be 'open', or to go back to the doctor (Bay Area) that did my partial colectomy and try doing it laparoscopically with the strong possibility of it being open. I think I've decided to go back to the Bay Area since that doc is familiar with my 'innards' and problems that I've had in the past.

I'm having breast reconstruction surgery on Friday and the Bay Area doc says that I need to wait for at least six weeks before undergoing the colon surgery. I also have to stay on antibiotics until then.

Hello to Everyone.
Just an update. The Fibromyalgia pain had disappeared after the colectomy surgery, so I went off of a number of meds. Well, the body pain returned and I became so sad that I cried and cried. The past 10 days or so, I have increased the Cymbalta (for depression and pain) back to the original 120mg dose, gone back on the Buspar for anxiety, and restarted the Trazadone for sleep. I am so much better. I stopped crying all the time, feel like I am thinking more clearly, and haven't had any pain in two days. With major depressive disorder and anxiety, there is a chemical imbalance in my brain. So I need meds to normalize, and I am okay with that. I thank God for good medications. I am still off the narcotics. I used to take Percocett up to 8 times per day for the Fibromyalgia pain before the surgery. It is good to be off the narcotics!

The change in me since this surgery is wonderful. I think even my senses are more enhanced. Being constipated is such a sick, full feeling. I thank God I will never have that feeling again. No colonoscopies ever again either. Yipee!

My prayers are with each of you and I hope today finds you feeling well or better.

Hugs,

Hi  guys:

I am new to the forum and wished I had discovered it years ago. I have had Crohn's colitis for 25+ years. I have to have a subtotal colectomy due to intestinal obstruction. I have not yet seen the surgeon, am going this Thursday but my colonscopy was not good this time and my CT enterography was worse. Anyway, my GI feels that a subtotal colectomy is the only choice of treatment because my strictures are so long and almost 100% obstructed. Balloon dilation is out because there are too many stricture and one is very long...11cm. So, surgery is really my only option.

Any advise for pre-surgery?

Julia

Adviceseeker, I am 3 weeks post op from my total colectomy.  I am getting stronger each day.  It is a huge surgery but I can't imagine spending the rest of my life so severly constipated and toxic from never going.  I did pretty well post op.  It is tough at first due to the the liquid stools but it does get better.  I still have to watch what I eat, it's a guessing game. I can tell you I had an NG tube when i woke up from surgery and it was a lifesaver, keeping all the junk your body produces from making me nauseous.  Now I know what all tries to go thru our intestines and can't....it's amazing we don't explode!

 

I would think that if your doc suggests the surgery then you should take their advice.  The meds can be very hard on your body.  I couldn't take them they made me too sick.  I can't imagine long term your body would stay the same, I would think it would get worst....but I'm not a doctor.

 

By the way...those ladies getting ready for surgery...do get some of the panty style depends and also the stayfree overnight pads with the larger back area have worked great.  The liquid stools hit me off guard in the hospital at 1 a.m.....no warning...no gas...humiliating!  I wish I had the depends on at that point.  I only wore the depends for the 1st 4-6 nights, now I wear the pads 24/7 just in case. I haven't had any accidents since coming home from the hospital though.  I also brought home the extra disposable pads they had on my bed in the hospital and keep one on my bed just in case.

 

Take care all....I know it's a tough decision.

Hi Irish_Mom, I'm so glad you survived!  I have had bilateral mastectomies with tram reconstruction, I feel for you. I have had to wear those very "supportive" bra's, too! Don't let it obstruct your breathing though, if you feel really uncomfortable- loosen it a bit. I hope you heal well.  God's speed to you.

 

Advice,

I have mS and my pre-op situation was that I had severe colonic inertia from the mS.  I also have nausea of unknown origin.  I had a moderate rectocele too, but when the surgeon reconnected the rectum to the small bowel it got "pulled" up so she didn't have to reinforce it and it's supposedly corrected now.  I had 2 different GI docs tell me my only option to feel better was to have the total colectomy.  I had a general surgeon do mine becasue there are no colorectal surgeons in my state, but she was wonderful and has done plenty of these.  Regardless of the recomendations the surgeon told me this was "elective" surgery but she felt I needed it.  You must decide wether you want to continue in misery or take a chance and have it help you.  I hope your decision comes easily and you feel at peace with whatever you decide.

    I HOPE ALL HAD A SAFE AND ENJOYABLE HOLIDAY WEEKEND

 

ADVISESEEKER - I'm sorry to hear that you're having a difficult time deciding if you should or shouldn't have this surgery.  This is a decision that only you can make, however, I know from my own personal experience that I was scared out of my witts too.  I had to seriously sit down and weight the pros and cons and for me, living how I was living, not to mention, taking so many medications (which I knew was NOT good for my body either), I finally decided that I HAD to have the surgery.  You asked that if in the long run things would get worse and/or if taking so many laxatives can harm other body parts....My opinion, according to what my surgeon said is yes, you will continue to get worse and I think taking OTC or prescripton drugs for any extended period of time is harmful to your body.

 

This is a lot to take in I know - ALL of us here have been where you are now.  This isn't an easy surgery, it's a HUGE surgery, and no one can prepare you for what's ahead if you do choose to have this surgery, we can only give you a glimpse as to what's in store for you immediately post-op.  Honesty is the best route and there is nothing easy about it.  I felt like I was hit by a truck, HOWEVER, this is ONLY short term.  I can honestly say that several weeks of being uncomfortable is worth EVERYTHING.  It replaces a life of being uncomfortable with no/or low quality of life and I would do it all over again!!!!!!

 

IRISH_MOM - Happy to hear you survived the surgery - WOW - six hours is quite a long surgery for repair - my heart goes out to you!!  I hope you a feeling much better today.  I know you mentioned that the surgeon wanted you to wait a little while to have the colectomy.  Seeing this surgery took so long, will they want you to wait a little while longer than originally anticipated? 

 

SHELLYPOO - Michelle, how are you feeling?  I hope things are beginning to look up for you and that you're feeling better by the day!!!

JULIA506 - Nice to meet you and WELCOME!!!  Please keep us posted on when surgery is scheduled for you.

The only advise I can give you is to go back and read the many "parts" of this thread.  There is a wealth of information here and it's invaluable!!  I'm like you, I'm so thankful I found this forum (thread) and wish it was a lot sooner!!  The people here are so AWESOME, CARING, INFORMATIVE, and HONEST!!!  

 

Sorry if I missed anyone or anything!!  All of you are in my thoughts!!!   

Hi All, I know you proably dont remember me i only posted before surgery. I had my surgery 1/10/06.It feels so good to go potty without pain. If i had it to do over i would.I had a total colectomy with the open precedure. I have questions to ask.Can you work out to lose stomach,mine is in one spot and flat under it? Has anyone been depressed since surgery?I have to watch what i eatand meat constipates me,is this normal?I have gained 25 lbs since surgery, is this normal?For people with raw hinneys the surgeon gave me some ointment called Calmoseptine no prescripton needed and it really works.Do you ever feel normal again.lol.I still have alot of pain around my navel and lower back. Any answers would help thanks for listening. And to all that is waiting for surgery you wont regret it i would do it again.

Adviceseeker- I haven´t had surgery yet. As I mentioned before, I suffer from general dysmotility in the stomach, small and large intestine. I am completely dependent on tube feedings into my small intestine as I am not able to eat anything by mouth. Unfortunately, my weight is VERY low and that is one of the main reasons why I am scared to have surgery. I don´t have a good doctor either. I am from Germany and have been looking for someone who understands for the past 9 years...no luck so far...

Take care-