Total Colectomy Part 14

danaalbertine, I have a stomach which empties very slowly. I think the criteria for this surgery (besides being stable in general), is having a diseased or non-functioning colon, (colonic inertia). Do you have that? I don't remember. Are you able to eat by mouth at all? I sure hope you are able to gain weight and become well. Are you doing what the doctors tell you to do? I know that when someone is so underweight, sometimes it is difficult to see things clearly, so I hope you are working hard to get better and to follow your doctors' orders. Are you in the hospital, or at home? Be well Dana.

I am sure enjoying my new body! It has been a very busy week for me, but I am keeping up. I sure enjoy pooping every day. I go three to five times per day usually. I love my new stomach and fitting into a smaller size of clothes, and not putting up with such a firm and distended tummy. I like not needing to take narcotics for the pain that I was in before the surgery.

I do still have a sore tummy from the surgery. Most of the time when I eat, it hurts, too. My surgeon says that's because everything is still trying to find a home in there, after getting rid of the huge colon. I also have a slightly sore bottom, as I am getting used to using it so frequently.

I had a nice Easter with my family, and I hope you all did as well.

Jillibean

Hi Resa- I find that so interesting about the water. I'm still presurgery (May 4th) but I hate plain water, but when I was preggers with my daughter I craved it and thought it was the weirdest thing. I just couldn't get enough...well I went back to hating plain water after she was born, but guess what...she craves water and that's all she drinks....I find that so fascinating. Now I wonder what I'll be like after surgery. I currently crave coffee which I hate that I crave because I tend to want to go home to get my fix if I'm out and about...or pay big prices for what I don't know is good coffee at a gas station. I'd so love to lose that craving. I have started drinking decalf so it's not such a need.

Robin-I can't wait to have form fitting clothes again. I live in sweats now and I hate it...I soo miss my jeans. I did buy some capri jeans for summer and I got them in like 2 sizes too big so my stomach doesn't hurt when I wear them..but of course they fall off when I walk LOL...oh the joy of this problem.

Stephanie

Hi Everyone,

JILLIBEAN - I do agree with you about having a smaller stomach and being able to get into smaller clothes. I almost get into clothes that I haven't worn in years. Right now I am still wearing sweats because my big clothes are now too big and my smaller ones are still a little snug. Pooping is fun to. I look forward to each bathroom visit. I am still on the heavy side but my side view looks so much better these days. My energy is returning. I actually tried to workout on my Nordic Track cross country ski machine today. Didn't spend much time on it but I used it for the first time in years. I even took my bicycle out to ride. I need to buy new tires for it but I am ready.

That stitch I mentioned a few post back that was sticking out of my belly button, well this morning it fell off. So I guess all is okay.

STUCK42LONG:  I knew you didn´t mean to say that I was anorexic. Some doctors have said that the dysmotility problems of my stomach and intestines are caused by the eating disorder I had. A few others told me that I could have had a malfunctioning gut that cause the eating disorder to arise...I really don´t know what to believe! But actually it really doesn´t matter now because I want to get help and feel better no matter what. I went to a colo-rectal surgeon once but at that time  I was even more underweight and he said that surgery would be very dangerous being this low weight ( of course I agree with him!).

Last year I went to another surgeon and he actually said that surgery would be the only option if I didn´t want to suffer anymore. He was not a colo-rectal surgeon though, just a regular surgeon. He also suggested just to shorten the colon but I have heard that this doens´t usually solve the problem and it is way better to completely remove it. Is this true? I don´t know how long my colon is, I just know that it´s "massively elongated", as quoted on the paper from my barium enema x-ray.

I am still looking for a nice, undertsnading doctor who focuses on my current problems and not on my past history...hopefully I will be painfree one day and able to eat how much and whatever I want. I am fed up after 10 years ( almost half of my life) of suffering!

I hope you are having a good day. Take care!

Tyblossom: Thanks for suggesting a doctor - the only problem is that I am from Germany! I am living in Berlin. I have actually thought about going to the States and seeing a doc there as the doctors here just don´t know very much about this condition. It would be very expensive for me though. I actually have talked on the phone to Dr Lahr from South Carolina, he is supposed to be a good colorectal-surgeon. But for right now I need to gain weight first anyway...which is very hard since I am suffering from malabsorbtion as well.

Take care-

Hi All,
I just wanted to update everyone and ask your opinions. I spent a week in the hospital due to abdominal pain and nausea. (This is an ongoing thing for me) They gave me fluids, pain meds and nausea meds and I saw several docs. My gi doc is trying to get a gastric pacer approved by my insurance becasue he thinks it will help my nausea and possibly my colon. My stomach empties normal to fast not slow. My insurance will not approve it. I did end up having the defogram in the hospital and it showed good pelvic muscles but a large rectocele. I will see my gyn on Tues. about repairing it.

I have asked the gi doc what next....I definately have colonic inertia and he said I may end up having to have my colon removed but what to do in the mean time???? I am tired of the wait and see game. Does anyone else have suggestions? I've posted here before and I have MS and lupus. The MS is causing the slow gut. Thanks so much.

Thanks for replying Stephanie,

I live in Central Mississippi, there are no colorectal surgeons here.  There are 2 general surgeons who are good at this.

 

My Interstim has worked wonders for my bladder problems.

 

One thing I forgot to mention was that while I was in the hospital I drank the fleets phosphosoda and it didn't do anything.  Then the next day I had the defogram with oral and rectal barium, yesterday the fleets finally kicked in....almost a week later.

 

I am really scared to have my colon removed, I worry about not feeling better afterwards and having new problems arise because of it.

 

I will keep you and the others in my prayers as you await surgery.

Thanks again.

STEPHANIE = Boy, you have to over look me - I can't seem to get things straight on who has had surgery and how long they've been post-op.  Here you are pre-op and thinking I'm CRAZY - LOL!!  Sure sounds as though your family doesn't do implants - YIKES!!

MICHELLE = Unlike Stephanie, I've never heard nor know anything about a gastric pacer, sorry I'm NO help!!  During ALL of the necessary tests ran pre-op on me for the Total Colectomy, I also had a fairly large rectocele.  I asked the surgeon if he was planning on repairing it during surgery and he advised that it wouldn't be a problem after surgery, therefore, he left it alone (seeing that you really don't bear down after surgery the rectocele actually goes away - it's the pushing we do pre-op that causes the rectocele in the first place).  I haven't had an issue since surgery!!

I know how easy it can be to be scared of this surgery and the unknown - we've all been there.  This is a HUGE surgery and recovery process - there is no sugar coating it, however, the benefits are truly worth EVERYTHING I went thru, HANDS DOWN!!  This is a decision that should be taken seriously, however, all the discomfort and healing process for me was worth getting my life back.  

The best advise I can give you is to read all parts of this Total Colectomy thread.  Aslo, get as much information as you can on the surgery via the internet.  It's very important to do your homework and it also eases some of the fears, or at least in my situation it did.  I also did research on the surgeon - you don't want to be someone's "experiment" - you need to look for an GOOD and  EXPERIENCED surgeon. 

I hope this advise is helpful to you.  Like Stepanie mentioned - so many of us here have been thru the trials of the surgery and recovery process, however, so many of us would do it again in a heartbeat!!

 

Hi Adviceseeker,

Concerning the 30 year out success rate, this is relatively new treatment for colon inertia and the data does not stretch out that far.  But what is the alternative.  Can you live like this for 30-40 years.  I know I could not.  I think one of the things that is not talked about enough is nutrition.  I for one no longer digest vegetables well.  So I make sure I take a good multivitamin.  Also V8 is a good alternative. 

TC has given me a new lease on life and I am going to focus on the here and now and let the years down the road take care of themselves.  I am so glad I am no longer toxic.

A comment for someone who said their surgeon was going to leave some colon in.  It is my understanding that the colon inertia arises from the nerves not functioning properly.  It cannot be determined by looking at the colon what nerves are effected and therefore the whole colon should be removed.  This is what my surgeon from the Cleveland Clinic advised me.  As for ileostomy.  In his hands, there was a 1% chance of having a temporary bag which could be reversed in 6 weeks.  He also had a 3% chance of having to convert from laparascopic to open.  It is good to go to someone who does this routinely and not a general surgeon in my opinion.

Take care all...

Phyllis

Hi Alison,

The worst is over.  Just rest as much as you can.  Listen to your body and don't feel guilty about sleeping and resting

take care

Hello everyone!!  Yesterday I posted a pretty long reply, only for an error to occur - ERRRRRRRR!!!!!!!!

BOOTY-BOO-HOO - My post was especially long for you and in now way can I remember all of the details I typed - I HATE IT WHEN THAT HAPPENS!!!  No, I haven't forgetten you!

First, remember you're just now only 10 days (9 days yesterday when I posted) post-op and that is still very, very soon.  Please DON'T get discouraged!!  I'm so sorry that your hospital stay wasn't a good one.

You will be sore and especially tender for a few weeks.  I was extremely sore for 12 weeks post-op.  Your exhaustion is another issue all together.  I didn't seem to get my strength and energy back until 16 weeks post-op.  Your doctor's reply that your body, in a sense, is in shock - that is absolutely correct.  Please keep in mind ALL the poking, prodding, and moving around they did inside your belly.

Also, everyone handles this surgery and recovery process in their own way - WE ARE ALL DIFFERENT.  Some of the others here had less problems and a shorter recovery time, where others had more problems and a longer recovery recovery post-op.  This thread is a WONDERFUL place for support and encouragement, however, NOTHING, NO MATTER WHAT WE SAY, will or can prepare us for what or how we feel immediately after surgery.  THIS IS A "HUGE" SURGERY!!!!!

I couldn't agree more with PhyllisB's response that the worst IS OVER.  It will only be a matter of weeks until you begin to share your success story with us and start encouraging others.  Just continue to take it easy and listen to your body - don't overdo it!!! 

I'm with you regarding the doctor saying we can return to a "regular" diet - RIGHT, LOL!!  I wasn't able to tolerate red meat AT ALL for weeks, in fact, dairy wasn't too good for me either.  My diet consisted of soup, instant mashed potatoes, cream of wheat, bananas, pudding, jello - things like that AND in very small quantities.  I can assure you that you will regain you appetite soon enough LOL!!

I will tell you that ALL of my post-op "trials and discomforts" were worth everything I went thru and if I had to make the choice again I would do it all over again!!  I have regained my life.  Considering I suffered for 40 plus years - the 16 weeks post-op healing time frame is NOTHING and my FUTURE will only continue to get better.

JILLIBEAN - I'm still amazed that you were able to return to work in the time you did.  I'm blessed that I don't work outside of the home (like picking up and cleaning a house isn't a job LOL).  I too am happy with my decision to have this surgery and your correct, your future will be bright!!  That's great about your rough dry skin clearing up.

ADVISESEEKER - PhyllisB gave you some great advise and I agree whole heartedly!!  I knew I couldn't live another year of my life "sick" with Colonic Inertia.  It wasn't any type of life in so many words.  I can only tell you, like I explained to Booty-Boo-Hoo, this is a HUGE surgery and recovery process, however, it does get better in time.  You will also begin posting your success story with the rest of us who've already been thru it!!

I HOPE EVERYONE ESLE IS DOING GOOD!!! 

Hi again,

I have a couple of more questions.....

what was the name of the cream you all recommended for after surgery (butt burn cream) I tried to look thru the posts and couldn't find it.

 

Did you need to donate blood before your surgery in case you needed it?  Did you need it?

 

I have alot of nausea, did any of you have nausea before surgery and it went away after?

 

Were you more comfortable in nightgowns or pj's in the hospital?  Were you able to wear panties after?

 

 

Thanks so much.

Hi Everyone,

SHELLYPOO - I did donate my own blood before surgery. Did not need it though so my surgeon disgarded it. It was only for (incase). I did not have any nausea before surgery and very very little after which was controlled by meds and gone by the next afternoon. I wore two gowns - one for the front and one for the backside. I did not wear panties because I had a catheter and a drain but after everything was disconnected - yes, I could wear them in comfort. My surgery was lap. I was hooked up to IV's for three days post op. I was using the morophine pump at first because I had the bad gas pain under my gallbladder and up into my shoulder. I informed the surgeon it wasn't working and he said it didn't work for that type of pain it worked only for tissue pain so I stopped using it. I was sore but not sore enough to use the pump so they disconntinued it on day two post op and gave me Vicodin for pain. The morophine only put me to sleep. I was up walking the next day after surgery. The one item I really enjoyed were the surgical boots they put on you to prevent blood clots. They felt so good massaging my calf muscles. I requested they let me wear them even after I was up and walking.

All - I had my post op appointment on Friday. Everything is good - no complication. He took more blood work to check if everything was okay. He checked my gluclose level because he was a bit concerned with my sudden uncontrolled thrist for water. I received the results on my HMO's website. Gluclose is fine. My cholesterol has come down by 34 points and LDL has come down by 50 points, but it is still high by 2 points. If only I can loose the rest of my excess weight. The 30 pounds I did loose is chalked up to being excess body fluid I could not expel because of my dysfuncational colon, shock to the body from the surgery and the weight of the colon. The surgeon still wants me to take it easy and not do any heavy lifting or heavy exercise. He said just because I feel terrific I am still healing inside. I can do light exercise and light lifing.

Hope everyone is having a wonderful weekend.