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TOTAL COLECTOMY PART 22

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Posted 5/5/2009 12:08 PM (GMT 0)
Lizzie, I am so sorry to hear of your newest trials! You have been through so very much, but you continue on with courage... an inspiration to the rest of us.

Hodaya, hope all has gone well with your doctor!

Marisa, welcome to a great group, rich with experience and knowledge.

Today is surgery prep day for me! I am having total colectomy tomorrow for multiple colon polyps, some quite large. We are planning on an open surgery, but there is a very small chance the surgeon can do it laparoscopically. He plans to make a small incision and peek at my scar tissue from former surgeries... if all is stable, we can proceed lapro; if not, he will expand the incision and continue as an open surgery. Sssoooo, my surgery and recovery are a bit up in the air at this point. The good news is that I will retain my rectum, and will not need an ostomy of any kind.

I am nervous, of course. But I have the most amazing support system of friends and family praying constantly for me, and I have faith which sees me through everything.

I wanted to thank all of you for sharing your stories so openly. It is so important for those of us just beginning our journeys.

Donna Rae
Posted 5/5/2009 12:17 PM (GMT 0)
Best of luck Donna Rae. I am sure you would be disease free after the surgery. My prayers are with you. You will be there in my thoughts so keep us posted. Take Care. Let them take out the useless colon.
Posted 5/5/2009 2:21 PM (GMT 0)

Good Luck Donna----- I wish you the best and will be praying for an unevenful and speedy recovery. I know you will do wonderfully.

Marisa- Welcome to this wonderful family, there is endless amounts of infor, knowledge and support on this site.

Hodaya- Whats the word my love? SO eager to see what they said.....surgery date I hope?

I am doing ok, still having pain and nausea......this is not getting any better and is horrible in the morning. I went to seem my ostomy nurses and they said these persisting symptoms are not notmal and I should be calling my surgeon, but I just did that Friday. I am taking 4-5 percocet a day, with 2 zofran and compazone, plus my antidepressant.anti-anxiety. I still cannot do too much. Its been three weeks now. My istiny nurse ordered me all new supplies and could see exactly why I was leaking si this is good news. My stoma  has shrunk from 1 1/2'' down to 7/8 ''......and they ordered me smaller bags. They were concerned about my eating but I am trying so hard. Weighed 104 today......its a good weight for me, but everyone is forcing food my way and say I need to gain ten lbs. I really think its from the mause and all of the meds. We will see....I see my surgeon in 10 days, they think i need to call today, but I just feel like such a burden and think I will just wait for my appt.

Judy, thanks for your prayers, the percocet helos, but not like I thought it would and insurance covers 20 pills/mo for the zofran which is not enough.......stupid insurance.

Miss u all.

Lizzie

Posted 5/5/2009 7:08 PM (GMT 0)
donna, GOOD LUCK my friend, i wish you the best success w/ your surgery, you're in my thoughts and prayers, waiting for your return, hopefully heathier and happier!!

Lizzie, i'm glad you're hopefully starting to figure out this stoma issue so i hope now you'll be able to deal w/it better. you're so reminding me of myself, i also always feel like i'm a burden to my drs and have hard time calling them myself.
i don't think 104 lbs is underweight yet, so don't stress to much about it, if your lab work is fine, so there's no reason to worry too much, that's what i think. i used to be that way for a while and i felt great w/it, not weak or anything at all. now i'm 115 lbs. hope you get better every day, my dear!!!!

well, as for me, i was too upset (well still am) yesterday after my appt w/ gi and psych guy, that i really didn't feel like talking to anyone.

i don't know if i ever have this surgery. well first of all they did their best effort to tell me about the bad things that can happen having this surgery and how i can end up worse than the way i am now, simply discouraging me as much as they possibly can and generally seemed REALLY NEGATIVE about me having the surgery.

one more frustrating thing that happened was that the psych guy said i shouldn't take laxatives everyday.. i say WHAT???? i mean this is totally confusing for me right now, you see, up untill 15 mons ago i was trying my best to avoid laxatives, cuz i was always told they are dangerous to the digestive system. when i first met w/ my current gi which was on Jan 2008 he told me it was o.k to use laxatives and in his opinion i should defininly take it on a daily basis, so i started to take, but only on a weekly basis. these past 2 mons i started taking them every day, cuz things are getting worse.

so this psych guy is now telling me that taking the laxatives every day is not good and i'm causing myself to be in a horrible cycle and i should break that cycle and try to take them now every other day and come back to him next week to tell him how it went...... now what the heck do they want from me??? and why they are confusing me like this??? what the heck is he talking about????? and what's the point of all this??? i don't understand what they're trying to do and i'm just SOOOOO frustrated!!


i'm sorry for the vent, but i'm so upset that all i do is cry, cause i get the feeling they don't want to send me to surgery. oooohhhh i don't know, will just have to see what happens.

thanks you guys for asking about me, i love y'all so much and i hope you're all well.

Posted 5/5/2009 8:42 PM (GMT 0)
Hodaya,

You poor thing.  I was hoping you'd come back with a surgery date, and instead it sounds like the Drs. really aren't listening to you at all!  They understand that you've had the sitz marker tests, defogram,etc, right?  And they understand your diagnosis is colon inertia?  Is there another Dr. you can use if you decide to change?  I'm so sorry.  Have you been able to use the bathroom using laxatives?

I remember I had one Dr. (GI) tell me to exercise and drink water...duh!  Like I didn't know that.  Some doctors just really don't  get it.  Is the Dr. you saw today a colon surgeon?  What are you going to do, sweetie?

I'm doing better...as long as I don't do anything stupid and eat certain things that I know will keep me in the bathroom for 10 hours!!  Yesterday was a great day; took 1 lomotil in the morning and ate very small amounts during the day and didn't go at all...then ate dinner and went about 7 times afterwards.  Today I've gone a little more,but only took 1/2 lomotil.  Still figuring this out, but today I'm feeling good!

Keep us posted on what's going on.  When they told you to come back next week, what did you say to them?

Janie

 

Posted 5/5/2009 9:09 PM (GMT 0)
thanks Janie, well they know perfectly well about my condition and they said it requires surgery, but they said they're affraid sending me to surgery, i'm not sure why!!!! maybe like they said, i could be worse, but staying like this is worse than worse.. i don't know. maybe they're just trying to help me, b/c of the anxiety i was having about the surgery and are trying to make sure i'm not anymore.

the drs i saw yest were the gi and psych guy. i can always find a new dr, there are plenty, but to start all over again after following with this team of drs for whole 15 mons and all of that time for nothing, i'm tired and sick and it's just getting worse. laxatives don't help as they used to a year ago. oh well, we'll see what happens. i think that next week i'm just gonna ask my gi wether he's planning on sending me to surgery at all. if he sais he can't send me to surgery, then i'm starting looking for another dr :o(
but if i go to another dr, it's gonna be a surgeon.
Posted 5/5/2009 10:05 PM (GMT 0)
Jeepers Hodaya, I totally understand where your coming from. I have had the same issues with doctors. I just do not understand why they will not help you. I am on my 3rd doctor and he really seems to be listening to me, at least I think he is. We will see after I see him on the 12th. I had one doctor tell me that I was making myself feel like this. That I wasnt eating or drinking anything because thats what I wanted to do and that was the reason I was not going to the bathroom. He basicly told me this was all in my head and to go home and eat and drink more. I got so mad that I just started balling and yelling at him. It was quite an appointment. Good luck Donna on your surgery, I hope everything goes well for you and you have a quick recovery. Let us know how everything goes. It is really awesom to talk to you all. You are the only people who seem to understand what I am going through. Everyone else I talk to think I am crazy for even considering this surgery. But, they do not have a clue of what I feel like everyday. You just feel like nobody is listening to you and its great to know that you all listen and most of all know what we all are going through. Marisa
Posted 5/5/2009 10:24 PM (GMT 0)
thanks Marisa, yes, we certainly understand each other more than anyone can, cause we share the same pain. i'm kinda still have hope that maybe i'm wrong and it's just another step of their plan, but the surgery will come. i don't know. i think that the minute i realize that they are not sending me for surgery for sure, that minute i'll collapse, you see, being with them, following their treatment and all for whole 15 mons and then find out it was all for NOTHING!!!! i think i'll just fall appart and lose it.
Posted 5/6/2009 12:09 AM (GMT 0)
Hodaya,
I thought you had seen a surgeon...it makes sense to me that a GI doctor wouldn't recommend surgery. My GI thought I was making a mistake, too. It wasn't until I went to the Colon and Rectal Center that anyone took me seriously. In fact, my surgeon suggested I go back to my GI to tell him I was having the surgery. When I did, he said it was "too bad" I had to do this. He still thought I was making a mistake. I guess only time will tell. It sure is nice being able to poop though!!!
Janie
Posted 5/6/2009 2:08 AM (GMT 0)

Hi Marisa,

I won't lie and tell you that I went back to my normal activities right away; this is a MAJOR surgery and this was actually the first time I actually followed directions and did what I was supposed to after my surgery.  I usually would go home and clean, run the vacuum, do laundry, grocery shop, etc. you get the picture.  I didn't do anything this time; I hired a housecleaner for 2 mo. and my husband everything else.  This was truly the surgery to finally help me get better after 6 yrs of several drs, countless procedures and surgeries as well as too many to count ER visits.  We even traveled 6hours away for one dr, so as you can see I wasn't going to do anything to mess this up.  Following this surgery I started seeing a kinesiologist/nutrionist who specializes in natural healing.  I finally started doing things again very slowly and have just recently - the past 3 months - started exercising again.

The bowels take a looooong time to adjust.  I had 20+ bms the first 6 weeks, then 8-10 for about 4 mo., then 5-8 until just about 2 weeks ago.  My surgeon had me try fiber but it didn't do anything and my GI had me try immodium, that completely stopped everything, so I really didn't mind the frequency so I didn't take anything and things just naturally slowed down; I know it sounds like a long time, but it's worth it compared to before.  I will tell you that my GI still has me on a low residue/low fiber diet; I know this is long compared to most but when I have eaten something I shouldn't I have extreme diarrhea.

Everyone is different and everyone heals at a different rate but I would definitely do this again; I have never felt better.

I wish you the very best.

Judy 

Posted 5/6/2009 4:14 AM (GMT 0)

Hodaya-

I am so sorry for your visit, bit I agree with others that you need to be seeing a colotrctal sirgeon. For some reason the typical GI is hesitant to sned you to surgery.....mine was becuase of my age, and then i ended up with colonic and rectal inertia. I do not want you to end up as I did.....becoming so constipated that your body finally gives up, causes and obstruction and your rushed to emergency surgery. See....this in our, and yours esp condition is what can happen. Its just not RIGHT....you need surgery and PRONTO...comon VAMOS.....lets get this going.

I cannot believe any psych guy, or for the matter that any of you have been told this is all in your head that it can possibly be an option. All the tests turn true for colonic inertia.....slow transit, whatever you want to call it you cannot go to the bathroom and this is not normal. I hate that doctors, or some, take this so lightly.....its a life debilitating condition and in the end can result in death. Whether it be fom electrolyte disturbances, bowel obstructions, or toxic infection. Its dangerous and you NEED TO ADVOCATE for YOURSELF!!!!!! I am one to talk, but you need too!!!!!!

I went out with friends for the first time sine surgery, three weeks for cinco de mayo....it was good to be out in the 70 degree weather. I was out from 4 p to 1030 pm and although I had to empty my bag about six times I felt ok. now I am in pain, I was for about threeehours being out, but I had a few cocktails......just bothing like my friends. I was on meds and scared and in pain still. All I had today is sherbert and some other stuff today, but felt sick each time.....its all I could eat. I am getting so nervous about my appetite. 104 lbs is not bad.....esp for my height, but i just do not want it to get worse. I am 5'2'' and this is a good wt for me actually, but just nutrionally compromised and i cannot so the supplements.

I love you all.....hopefully I will not have any leaks now......this is just such a life adjustment....i cannot do it well.

Lizzie

Posted 5/6/2009 6:53 AM (GMT 0)
thank you guys, things will work out, they have to eventually.

Lizzie, it's great that you're going out, i'm glad you had fun, but i hope you're being careful with the alcohol. how much is 5'2 in cm? i'm 164 cm. and when i was 104 lbs, which is about 47 killos i looked really great. i'm praying you continue to get better.

Janie, i'm so glad you're doing better, dear friend, and hopefully with our prayers it'll only get even more better.

i'm so worried about Linda, i wonder what's happened.
Posted 5/6/2009 4:47 PM (GMT 0)

I CANT BELIEVE THIS SH*%T YOU ARE GOING THROUGH HODAYA!!! Sorry for language.

It took me 10 years to get myself sorted!!! I remember 3 years ago i had to see a psychiatrist too because some people ovviouslly have psycho probs and it affects their bowel.  but not when there is a real physical problem for heavens sake ...they obv thought i have ci becasue it was in my head????!!! aaaahhh ...dont you want to scream!!!!!????? mad mad mad mad mad mad mad mad mad mad I eyes  IF ITS CHRONIC THEN ITS NOT GOING TO GO AWAY WITH A LITTLE TALKING PSYCHOTHERAPY...HELLOOO!!! what are they on!

I also was told to stop the glycerin suppositories or not use them too much and NOT go to the toilet so much!!!....etc etc....what a lot of S....T!! pun not intended.  You know Hodaya you are going to have to put your foot down and not see that idiot anymore and speak to the colorectal surgeon like everyone said - GI drs are a bunch of idiots at times....even some surgeons unless they are knowledgeable about colonic inertia. 

I remember wanting to kill myself once because no one would help me - but i kept fighting my corner...and so shld you.

by the way i wished i weighed 115lb - i have no idea what i am but i was 59kg before surgery.  i was around 51k few years ago.  i have lost a bit because of not eating so clothes feel a bit better.  i am paranoid gonna put weight on again through no exercise cause of working fm home.  when i ok i will do some each morning.  right now i am very sore in the tummy cause i sneezed yesterday - yes i know! i am weak there now. i have also been running around moving my dad to another nursing home today and lugging stuff around so my tummy is swollen looking. 

anyhow thats enough frm me. xxx

Posted 5/6/2009 7:02 PM (GMT 0)
hey Karen, thanks! i'll be o.k, like you said, i'll just have to go on till i get what i need. seems like we all have to go through this difficult proccess, so we don't have much choice but to cope with all the difficulties that in our way.

things will work out, i'm sure. how and WHEN? that's another question. that's what most bug me - that major part of our lives has to go to waste before we have the apportunity to win it back. it's been 16 yrs of my life that went to waste already, and please.... how much longer? all of my 20's and most of my 30's are already gone... my whole life is on hold b/c of this prob. what's left for me? i'm so sorry for all of this depression.

gosh i'm so worried about Linda.
Posted 5/8/2009 2:55 PM (GMT 0)

HI all.......just checking in? How is everyone, you have all been quiet......is that good or bad?

Worried about Linda....

Lizzie

Posted 5/8/2009 2:59 PM (GMT 0)
hey Lizzie, am getting ready for sabbath. i'm keep thinking about Linda too. i hope she's getting better.
Posted 5/9/2009 12:44 AM (GMT 0)
Hello everyone, I had my last xray today for the sitz marker and all the markers were still there. Thats a big shocker. I could have told them that without the test. I have my barium enema on tuesday the 12th. Which sounds like a blast. I just hope I will have answers after I see the doc tuesday afternoon. My boss is not too happy with me. He does not think I should go through with the surgery if thats what is recommended. He thinks I am pretty crazy for doing such an extreme procedure. But nobody understands unless they experience this hell for themselves. Whats next for you Hodaya? And are you feeling any better Lizzie? Is your pain any better? talk to ya all later.

Marisa
Posted 5/9/2009 4:03 PM (GMT 0)

MArisa.....Still lots of pain, acually very bad last night, but itsi in my yummy and back. Still not a great appetite either....waas 101.8 this am again. At least I am somewhat maintaining.....

Do not listen to your boss.....this is something n one can understand unless they have gone through it themselves. Although I have had many complications, it was still the best decision I ever made....follow your gut and your heart...the markers dont move through because your colon is sick :( Hope you well.

Lizzie

Posted 5/9/2009 6:19 PM (GMT 0)
hey Marisa, i don't know yet, i see the psychiatrist on monday, i don't know wether my gi will be there too, like he was the last time, but was thinking of just asking him wether he plans to send me to surgery at all, or is it out of the question in his opinion. i don't know what i'll do if he has decided to not send me, i mean starting new w/ another dr is just unthinkable.

hang in there, i hope your barium enema goes easy, drink lots of water after the test, so the barium doesn't dry you too much - very important!! good luck, my friend!!!!
Posted 5/10/2009 2:16 AM (GMT 0)

confused  I am a new member and have a question for all of you that have had a total colectomy with the small bowel attached to the rectum (you see I don't even know what that is called) and it's been 3 years since my surgery.  I am wondering if any of you ever feel that you get a kink in the small bowel and have pain just under the right rib cage and hardly have any BM's until the pain goes away.  Usually if I start stretching and working my abdomen as soon as I notice the pain, it will go away within a day or sometimes have to go on liquids for a couple of days.  I have even taken MO a few times.

Also, have any of you experienced a narrowing of the rectum or anus?  Or a hernia or abcess in the small bowel.  I have been very fortunate in that I have not had too much trouble in the past 3 yrs. but am beginning to have some.

Posted 5/10/2009 4:01 AM (GMT 0)
Hi everyone,

Still no word from Linda?  I hope everything is ok, she should have been home and well enough to write by now!

Hodaya, good luck on Monday.  If these doctors don't sound like they're willing to schedule you for surgery, then you really do need to find different doctors.  You've had all the tests, so they know you're not making this up.  You really need to find a doctor who will really help!

Lizzie,

I'm so sorry you're still having problems.  I hope you're feeling better soon, and that you can start eating better. 

Well, it's been 7 1/2 weeks and the last week has been pretty good.  I am going about 10 times a day  now, but really isn't a big deal.  I'm good during the day, only go about 3 times, but after dinner is when I have to run back and forth more.  Still way better than 20 times.  As long as I stay away from ice cream after dinner, I don't have too much butt burn.  Ice cream is a killer and my very favorite food.  Every night I have a discussion with myself as to whether it's worth it or not!! LOL  Tonight I had brautworst, corn on cobb and french fries with brownies and so far no problems...I've been really careful about what I eat, but splurged tonight.  Hopefully I won't be up all night!

Hope everyone has a very happy Mothers Day tomorrow!

Dida,

I just had my surgery 7  1/2 weeks ago, so I can't really help you with your question.  I know that until this past week, I was in the bathroom ALOT, but things have slowed down.  I feel lucky because I haven't had any pains at all other than a sore rear end.  Hopefully someone else can answer your question.  Did you have your surgery because of colon inertia? 

Janie

 

Posted 5/10/2009 7:13 AM (GMT 0)
Janie.. please keep up the good work and continue to feel better and better! i'm so glad you're doing good and i pray for you it goes on to be good. just please G-D, let it keep flowing!!!
since you mentioned rectal issues prior to the surgery, i'm really curious wether you still have some, i mean when you have a bm, do you still get the feeling, like before the surgery, that the rectum is not completely evacuated, or is this prob gone? (oh.. i so hope it's gone and never comes back!!)

dida... i haven't had surgery yet, so i can't answer your questions, but i hope things resolve for you soon.

much love to everyone.
Posted 5/10/2009 2:40 PM (GMT 0)
Janie and Hodaya, thank you so much for your responses. I am so uninformed on all the terminology of this surgery even tho it's been about 3 yrs. since I had it. Yes, my surgery was for colon inertia after another surgery necessary for a rupture of a diverticuli. I had 8" of colon removed and had an ostomy for 3 months then a reversal and my colon never worked after that so 9 months later I had a total colectomy. The dr. said I had enough colon for two people. I also had surgery after that because my small bowel grew into a mass from adhesions. I was in the hospital for 21 days from that and was critical for a time. That was 2 yrs. ago. I also have diabetes, heart disease (5 stents and triple bypass) and have had 10 major surgeries since 2000. Some would say I am a mess but I'm 68 yrs. old and still kicking and complaining about my bowels so I must be O.K

Love to all, Dida
Posted 5/10/2009 6:10 PM (GMT 0)
gosh Dida, you sure have been through a lot, but you sound like a very strong person dealing w/ all of this. have you talked to your dr about your new simptoms? it could be it's all due to adhesions again, but i couldn't know. i really hope your dr can help you, please keep us posted on how it goes for you, best wishes to you!!
Posted 5/11/2009 3:59 AM (GMT 0)
Dida,

You certainly have been through alot!  My goodness, I feel terrible complaining about anything!  I really hope these problems you're having aren't serious!

Hodaya,

No, my rectum problems aren't solved.  Today has been a bad day...maybe because of dinner last night!  Who knows, but all day I've been going to the bathroom only to have tiny amounts come out, and feeling like I'm still full.  On the nights I have really loose stools, I don't feel full, but on a few days, like today, everything is formed like little pellets (sorry) and I feel like I still have to go.  It's so frustrating and so uncomfortable.   I even tried a suppository to help.  Usually after dinner I run to the bathroom several times and it is loose at night, but  not today.  I even ate some ice cream to try to get things going, but no luck.

I haven't taken any fiber or lomotil in several days, which is what I blamed this on before.  I have definitely slowed down on bm's, and on how much comes out, which I'm not sure is a good thing.  I guess time will tell.  I've eaten lots of sweets this weekend, and they tend to stop me up...I'm hoping tomorrow will be better. 

I've had good days and bad days, but I was hoping never to feel full like I do now again.  Of course I know  about the pelvic floor dysfunction...I'd love to think the rectocele is affecting this, but it's not as big as I thought it was, so it's probably not that.   I'll keep you posted...be sure to let us know how things go with your Dr. too!!

Janie

 

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