Total Colectomy Part 4

Wow. I thought I might evoke a few responses with my last post and I was right! I understand how riled up some of you are and I do appreciate your candid and honest expressions. However..... this is an open forum and I do have the right to my opinions and expressions as well.  For those who calmly responded with thier own experiences and sincere advice and thoughts on the matter I appreciate it. That is what I was looking for.  For those who may think that I am uninformed or I have just not truly experienced what life is like with this problem- well that is just "crazy"! What I wrote wasnt "personal" or "judgemental" against anyone in this forum.  If people are confident and satisfied with thier decision then there should be no reason to get defensive. Just make those expressions in a calm and rational manner. I have dealt with this problem 15+ years. I have been hospitalized on several occasions for a twisted bowel, taken the meds/laxatives/enemas/ and gone through the endless testing and retesting. I am at the point where I want and need a solution.  And I am obviously trying to get as much information as I possibly can before making such a big decision. I understand surgery and what it involves. I have had 4 surgeries; gallbladder, hysterectomy and 2 laps to remove adhesions on my bowel. I understand that there will be pain and a healing process. My point of the last post, for those who missed it, was to be reassured by those who have gone through this surgery that there are more pros than cons. I have done my research and to be frank there are a lot of those in the medical field that do not agree with this surgery. For those who do not experience the affects of living with this condition day in and day out, surgery seems very extreme. That is the mainstream opinion. Then to read experiences of those who have gone through it that have had complications and continued pain and discomfort- well anyone would question it. On this side of the surgery my apprehension is quite normal. My fear and frustration not knowing what is the right decision is weighing on my mind. Sorry if that offends some of you here but isnt that what this forum should be about? Or does everyone just want to talk about how great surgery is. Just looking for REAL feelings, which I did get from getting everyone worked up. Thanks.

well gingy.....
since no one else has responded yet to your last post, let me be the first to tell you what a "jerk" you sound like!!! You want an honest opinion??? I'll give you one!!!! It SUCKS!!!!! It sucks that each and everyone of us has had to put our lives on hold for this hideous disease. It sucks that we have had to make decisions about altering our bodies that are suppose to be made perfect through God, it sucks that we have all had to live in humility at one time or another due to this problem, it sucks that at one time or another we have had to convince someone, wether it be a doctor or a family member, that this disease is real and not in our heads, it sucks that when we went to the pharmacy and had our carts loaded with laxatives that someone thought we were using them for diets, (I had a pharmacist tell me using laxatives was not a good way to diet) it sucks that most of us have beat ourselves up thinking we had this problem because of our poor diets, lack of exercise, or stress, it sucks that at every doctors apt we knew there would be another humiliating test, and yes, another OPINION, and ya know what else sucks...the enormous decision we all had to make to have our colons removed, knowing it may or may not work, knowing the stress it would put on our loved ones, the cost, the pain, the emotional trauma, and oh, did I mention the PAIN. You see gingy, to all of us, and I hope I speak for at least most of us, this wasn't a decision made "lightly", it was made out of desperation. There is a distinct difference between living life with some pain, and living life not feeling well. I can go to the grocery store and do my shopping for my family with some pain, but I could not when I was feeling so sluggish, crampy, bloated, and like I was going to puke all the time. It's YOUR illness, and if you feel you can live like you have been, and endure all that "sucks" for awhile , then surgery is NOT for you. But, when you get to the place in your life, and you may be there,that you are tired of "Watching" life pass you by, then I would suggest surgery. Heres one more thought for you....my Doctor told me this when we were exploring ALL the options out there for me..Opinions are like ******s, everones got one!!!!!!! So if you wish to state your opinion on how this surgery has affected us, please keep in mind the visual we will all have! Have a nice day!

Tammy - I just your reply and AMEN !!! it did suck, but it don't suck anymore

Kelly

Ok gals, enough.  Did anyone develop tripper points after the surgery, and if so what kind of treatments did you have to go through?  I start a series of shots on Monday.  I hope they help.  Please keep your fingers crossed.  I also start back to work on Monday after seven weeks off and I must say I am ready.  Six weeks wasn't enough, so the doc gave me one more week off.  Maybe it was because of all the trouble I had in the hospital.

Everyone, be well!

Zoe

Zoe - I am sorry dear that you have had a rough road of it... but the trigger point shots should make you feel better!  Take it easy this last week off of work.... perhaps it was the hospital stay, and perhaps it was doing too much to soon... but regardless you should feel better soon!

Tammy - AMEN with your posting, I am so proud of you! 

Kelly - Im suprised that you doubted that the surgery was the right thing, you are doing so well

Gingy - Here is the thing, I am more than willing to help in any way I can, but when you call someone crazy and imply that I am a hypochondriac, I get worked up.  See for 24 years of my life every doctor I had ever seen told me that constipation was normal.  I would try to explain it was severe, but no one would listen.  When I got my colonoscopy in May for rectal bleeding, they couldnt even get me cleaned out.  The doctor just dropped it on the table "i think you need to have it taken out."  Imagine your frustration when for years of your life you have been told it was nothing, and in the span on 1 1/5 months you are having surgery.  No one is going to make the decision for you, and you have be comfortable with the decision you make.  Let me tell you a story...

My surgeon is a typical surgeon.  And like a typical surgeon, he is not going to recommend an elective procedure.  He says "not doing the surgery will in no way kill you" but yet he also recognized the severity of the problems.  I tried to pin him down 2 more times to say he recommended the surgery and all he would do was talk about the surgery, the recovery, and things like that.  After the surgery he met with my mother and she insisted on talking to him about my 2 cousins who have similar problems.  Afterward, my mother informed me that my doctor was not in favor of the surgery for me.  I shrugged it off and said "well too bad" recovery went uneventful... 5 days after surgery I started violently throwing up and had to be restarted on IVs and other things (when I was almost ready to go) I couldnt keep anything down for over 20 hours, and I was upset.  I kept thinking, maybe this was a mistake ... why would my surgeon do this surgery if he wasnt in favor of it.

I was VERY depressed, and crying alot.  I was a scared... well the next day I was better... keeping clear liquids down, and feeling stronger.  My surgeon came in and I finally got the nerve to ask him "why did you tell my mother you were not in favor of the surgery... and then why did you do it" He laughed and said "I was afriad she wouldnt get this right" he was not in favor of the surgery for my COUSINS... he was absolutely in favor of my surgery.  He said "I thought you would know that when I said you were a good surgical candidate and discussed the surgery that you would know I thought it was the best decision for you"  He said "if I didnt believe so, I wouldnt have schedule you so quickly, and I would have tried to talk you out of it."

Anyways, the moral of the story... I firmly believe that surgeons cannot recommend an elective surgery because if something goes wrong you can sue them.  Yes our problems are real, but the reality is the surgery is not essential... and thus making it elective.

My constipation problem has cleared up slightly.  I went like 4 times yesterday and once today already.  I feel GREAT!  I walked to get the mail today (about 3 blocks) and its funny because I am SOOO much stronger then I was a week ago (the last time I walked to get the mail)  Go me! :)

Hugs to all,

Emma

Emma -  I was afraid of the unkown after surgery.  But, I am glad I had it done.   Here is a funny thing.  I really thought I could go back to work 4 days post surgery.  I was still dying on that day.  I heard lap. and thought easy in, easy out. Ya right.

I went out shopping today for 6 hours.  My back and side are killing me.  Not used to being up that long.  But what hurt me even more was hearing that darn kid scream through out the entire store.  What a set of lungs !

Now, onto my son's birthday party.  Pizza and go kart racing.  He thinks I need to drive a kart also.  Tried to explain why I can't.  At the store when I came to close to another cart.  I covered my lower stomach as to block it incase of an unforseen accident.

Kelly

Its probably better that I ended up with an open, otherwise I would have pushed it way to early.  When I had my appendix out when I was 18, I was back to work, full lifting and everything in 7 days... I was supposed to be on lighty duty, but who can do that in a nursing home.  Luckily everything was okay, but gosh that is stupid. 

I wonder why I feel so great.  I remember reading how people were doing at 3 weeks out, and I feel just FABULOUS!  I really think I could go back to work, without lifting.  Instead I am spenidng the time to make my class PERFECT!  This fall semester is going to be a killer for me.  Bewteen the classes that I am teaching and the ones I am taking, I have 2 days during the week that are 14 hour days, ouch!  I should relax and enjoy the time off...

Just got done going through ALL of my clothes.  Packed away 2 boxes of clothes that dont fit now, but should fit very soon.  Little victory though, I bought pants in June for school, and now they are WAAY to big!

Hugs,

Emma

Hmmm been quiet on the boards lately!  How is everyone doing?

Hugs to all,

Emma

Emma, what does this mean. The pathology report from my colectomy said I had intramucosal pigment laden macrophages and fibrous obliteration of the appendix. It also said they were benign. I got the letter from my doctor today and I don't see him until September 1. Any help would be appreciated.

Thanks,
Zoe

It finally happened.  I thought I had gas - but I went in my pants instead, at work.  I made a beeline for the bathroom.  Cleaned them out and went about the rest of the day "free" as they say. 

I am planning a trip home to my mothers in October.  It is a 5 hour drive.  I will take the interstate because there are rest stops every 50 miles.  The next day I am going to a college football game.  I will just have to watch what I eat the night before and morning of each of these events.

I am really starting to put my weight back on and I don't want to.  Gosh I hate it.  I really need to drink more water.  I think that will be the key for many things.  I too, watch what comes out.  I brought home one of those toilet hats, so I can occasionally see how much is coming out.  I have discoverd tomatos (without skin) is a good cleaner outer.  I ate some bits of fried catfish last night, don't think it was a good idea, being fried and all.

How is everyone else doing?  Was wondering how close are we too each other.  Would anyone enjoy getting together sometime?

Kelly

I agree with Emma about your path report, mine said something along the same lines, but all in all, benign.  That's what mattered to me anyways!

Kelly and Zoe, the "bout of incontinence" happened to me also, but thankfully only while I was in the hospital, while I was being weighed Talk about a bad time huh?!  Hasn't happened to me at home/work, but gosh, sometimes I do have to check b/c ya never know!

I am in North Carolina, sort of around the Charlotte area.  That would be cool, a TCC

Hi everyone:
I have a newly diagnosed abnormal colon, althoough from what I have been told it has been abnormal all my life. It has become a real problem the past 4-5 years, severe constipation, nausea, some stomache pains(although not constant and not too severe). I have been recommended by my gastro intestinal doc for a complete coloestomy. The more I read about this procedure, the more it scares me. Although some of what I have read in this message board has helped aleviate my fears. The surgeon I consulted with so far says this is an operation that certainly has it's draw backs, the possibility of adhesions, twisting of the intestines, incontinence, and pain, to name a few. Right now I am on several laxitives and a motility drug which helps with the constipation. But without the operation, I would need to be on them permanently, which is not good. The condition I have wlil not improve without the operation, and will probably get worse. And I risk the possibility of having to have emergency surgery if my secum shuts down. It is twisted right now and could continue to twist. Anyway I see alot of reasons to have the surgery, but I am not sure I will not be trading one set of problems for other worse ones. I would appreciate any feedback from anyone. Thanks,
Mary

Welcome to the group Annie and Mary.  

 Catherine, I also (like many of us here) saw 2 surgeons prior to my surgery.  For some reason, lots of GI's and surgeons think surgery is too extreme for colonic inertia, maybe if they would wake up and realize that it is in fact something real, and itaffects so very many women, the people that suffer from this wouldn't have to suffer for 10-15 years like a lot of us.

I tried rx and OTC laxatives for years, nothing really helped me to go, until surgery, and it is fabulous!

Somer