TOTAL COLECTOMY PART 19

Nonna-

I too had a TC in Feb and have slowed down. I take Miralax or Milk of magnesia. I also just started reglan and my surgeon is having me try biofeedback therapy. I go very little without help and have had increased bloating occasionally, but i am still way better than before surgery. Hope this helps. Miralax is safer....not stimulant.

Lizzie

Hi All,

It has been a little while since I have given an update on my daughter Takera...she had her TC on 6/5/08,and we are still in the hospital...thigs are not going as well as planned/thought. They finally took her NG tube out 6 days ago,and she is allowed to sip on clear stuff,her bowell sounds are finally coming back,and since she is not eating,they have put her on TPN/LIPIDS for 16 hours a day, She still has had no BM,they have her on motility drugs round the clock,and we are back to sitting on the toilet and pushing,3x a day...she does pass a little gas though...she is getting bloated and distended again,not like before they did the s/x,but for someone w/ no colon,and almost no rectum left,she is distended...drs are not happy,we are not happy...she wants to eat so bad,she wants to go home,and she wants to go to the bathroom!!! They are talking about different things now,to get her to start going...none of which she is happy about,enemas,rectal tubes etc...back to the begining it seems like...she has had a lower Gi last week and everything looked good ,no leaks or blockages,but they had o sedate her for that ,and she was still crying and yelling during that "stop torturing me,it hurts!!" I don,t see how we are going to go back to that other stuff w/ her being like thatI don,t think the drs understand...that is all she has known her whole 11 yrs of life,and shes done!!! This was my bigest fear w/ this s/x...all of her other other s/x,s hanever worked out like they were supossed to either,thats why we wante dto go to a bag...to me it does not make any sense,a bag could CURE her,no more meds,no pain,no ennemas,no rectal tubes etc...she could have a life,for the first time ever...eat what she wants,swim,run,jump,etc...not feel sick everyday,not eat half a happy meal and be full,no more liquid diets,high fiber diets,soft food diets,and every other diet you can think of ...We are having a big team meeting on tuesday 7/1/08...I hope we all come to some of the same conclusions...QUALITY OF LIFE...it has to be considered...now though we have to let her body heal,even if we all decide that a bag is the way to go...more waiting,and in the mean time,do we go back to square one?????  I,m venting a little...this web site has been a blessing,just talking w/ people that have been in the same place, it really helps alot. Anyhow just keep us in your prayers,and we are still praying for all of you that have just had s/x or having some complications...I know beyond a shadow of a doubt,that GOD has a plan through all of this,and that I have to trust HIM...HIS ways are not our ways,and HIS thoughts are not our thoughts...and HE does have a HOPE and PLAN for Takera,no matter what it seems to look like at this moment...Thanks for letting talk !! It really helps!

Krista & Takera

Hey guys....thanks for the info on Reglan. It does make me feel crappy. I get very shaky and anxious and feel like I have to lay down and just shut my eyes. I have not been taking it very much. I have been doinf milk of mag and mirlalax each once a day and have been doing good.....going 4 times at least. Not very formed, but going. I know this may be graphic, but when i eat fruit or veggies they come out just as i ate them and look unchewed. My surgeon says that I mat have some degree of gastroparesis. Does this happen to anyone else. Thanks for all your advice. I start biofeedback therapy this week and hope that helps as well.

Booka- I will be praying that God guides you and your family into making the right decision ofr your daughter. I will be praying for you all.

lizzie

Hi All HAPPY JULY 4th!!!!

Well Takera had all of her testing yesterday,and they placed a rectal tube in. They did motility testing on her small bowell,and her stomach on up...We don,t have any results from that yet. but the good news is that we are getting results w/ the rectal tube!!!   They are letting her eat a little bit whle the tube is in...they don,t want her getting backed up. It looks like that we are going ahead w/ the ileostomie. They had said if the rectal tube worked,and the other testing came out good that it would mean that it as her rectum was the problem,and we could move forword...Thats what we want...she told the doctors she doesn,t care how she goes BM,she just wants to go   So keep praying,that we move forword w/ the s/x!! It has been a LONG 11 years,espically the last 6 weeks!!

Krista & Takera

Hopestar-

Sounds a lot like my results from the sitz marker. I have a very similar history to you. I had the sitz marker test in November and had an EGD and small bowel study (ate radioactive eggs) and then I was directly sent to the surgeon. within a week or two I saw him and had a defecography, anal manometry and blood work. I had my surgery scheduled immediately after the test results were back. I went on vaca so I would have had it early Jan, but had it jan 28. I think this is pretty typical, but my surgeon  only operates on Mondays so that made mine a bit longer too. I have heard of the pacemaker....i have a degree of gastroparesis too, but I am starting biofeedback therapy on Aug 6. I also take Milk of mag once a day and with that go about 3-4 times a day. I hope you are finding some relief today. I am always here if you need to talk. Take care

lizzie

You have probably tried it, but have you tried Sodium picosulfate?  (over here in UK the brand name is Picolax).  Its a disgusting powder you mix with water and they usually give it to you just before surgery (or not depending).  i have it now and then, but sometimes it works sometimes it doesnt).

good luck and so sorry for your pain xxx

karen.

Hi Berbsnicole,

Sorry to hear that your Mother has had to go through this big surgery.  Perhaps after she is off the pain meds and is walking around her appetite will improve.  Perhaps the doctor can order some nutritional support like Ensure to help build her strength back.

Let us know how she is doing.

Hi hubbysupport, 

Sorry to hear about your husbands troubles.

I had my total abdominal colectomy Sept. 5, 2007, because of a finding of high grade dysplasia in one of the biospsies from a colonoscopy earlier in the year, and they did find early stage cancer in one of the biopsies after the colon was removed.  During they surgery they did re-attach my small intestine directly to the top of the rectum and I didn't have an ileostomy.  Do you know how much of the rectum they left?  Also, what was the reason for his surgery?  I had a long history of ulcerative colitis and with the finding of high grade dysplasia (pre-cancer) I was told my colon had to come out. 

I have no j-pouch either, just a re-attachment of the ileum to the rectum.  In my case the surgeon also left a couple of inches of the very bottom vertical part of the sigmoid colon along with the rectum.  I had quite a bit of D the first 2-3 weeks at home but that has gotten much better over time.  I have found that metamucil taken once a day mixed in a glass of water helps the stools to be more formed.  For me the long term outcome has been probably as good as it can be and I wouldn't mind answering any questions you might have. 

Rick

I met with my surgeon who is wonderful and she wanted to make sure the surgery would help me and that I wouldn't have the same problem after surgery so she scheduled me for some tests. First she did a very deep biopsy to rule out Hirshsprung's Disease (which I don't have) and then she sent me for a manometry study.  Luckily for me my rectal muscles work great.  The ladies performing the test were really impressed.  When I went to push the balloon out I had it pushed out before they even left the room! 

Now I'm scheduled for surgery on September 22 for the TC.  You may have seen my previous post titled something about Surgery September 22.  (I have since changed my screen name) Anyway, during surgery they are going to attach my small intestine to my rectum but my fear now is that I don't have enough of my rectum left to do this and that I'll end up having a bag after all.  Ironically, while typing this the dr.'s office called and said she just finished reviewing my surgery notes from last year's resection and that although it will make my surgery much more difficult, she is willing to go ahead with it.  She will tell me more about it at my pre-op appt. on Sept 12.  So, I'm hoping all will go well.

Thank you for letting me give you my history.  I wil probably be posting often up until my surgery and asking a lot of questions.  Any answers or advice is greatly appreciated.

Have a great holiday weekend!

A~