HealingWell
Search Close Search
☰

TOTAL COLECTOMY PART 19

Support Forums
>
Ostomies
✚ New Topic locked
1 2 3 4 5 6 7 8 9 10 1112 13
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/15/2008 2:15 AM (GMT 0)
Amanda,

I'm so sorry you've had such a terrible time!  So many of us have been thinking about you, and were so worried.  I hope and pray you start healing well, and are soon able to eat and drink.  You have to keep up your strength!

Get lots of rest, and be sure to keep us posted on your recovery!

Hugs, Janie

 

Posted 10/15/2008 2:41 AM (GMT 0)
2 ris k,
I am so glad that you are back, we missed you. I am glad that surgery went well. I am so sorry about what had happened to you with being ill. Hang in there. The most important thing is you are back. It will be a long recovery, but in the end, it will be all worth it not longer being constipated. I am just getting a full recovery myself. I realized I have a ton of food intolerances and can literally have only 26 foods, including iced drinks, and peanut butter. It took me a while to figure this out, but I kept a food diary and wrote down all the things I can have, since it was alot easier to write all the the "good" things because the list would be too long if I had to write the "bad" things. I went to see my surgeon for another follow up last Teusday, and he said I was doing so well, he even felt my stomach and checked the scars and he could not believe how ell I have recovered. He told me I would always have the food intolerances, but I take a multi-vitamin to make up for lost nutrition. I take the very small pills, because the big ones are hard for me to digest and they hurt coming out of the butt. I have pretty much kept my weight off since the total colectomy and fluctuate between 105-108lbs. Well, I hope you get better and i wish you a speedy recovery. Also it was nice to hear from you. Keep up the good work.
Posted 10/15/2008 9:52 AM (GMT 0)

Hey Amanda

oh so sorry to hear about the complications  cry  that's so awful for you....i hope today sees you feeling a lot better now you are home - i also was a bit worried....how long will you have the temp ileostomy??

I hope you are feeling better a lot soon and can post us with how you are doing yeah

take care now.. karenxx

Posted 10/16/2008 4:52 AM (GMT 0)
2-ris-k Sorry about all that happened to you.When I woke up with my temp. ileostamy I also felt like my stomich could only hold about 4 bites of food.Everyone will be pushing to get you to eat more but just eat what you can or you could end up throwing up (I did).My DR. wanted me to eat protin the most so try eggs and meat (chicken sits better in your stomich).The multi V. is a good idea but you can take a childrens chewable and your body will get more out of it then a pill form.Well I hope every thing gets better for you from now on so good luck.
Posted 10/18/2008 4:14 AM (GMT 0)

Hi Amanda,

So sorry to hear about all of your complications; was very worried as it's been so long since we've heard from you.  It may seem like you've been run over by a truck but each day will slowly get better.  I see a kinesiologist and nutritionist that have helped me immensely with my healing.  I drink pure coconut water  for dehydration-I need to dilute mine half & half, but this is an excellent sorce of electrolytes w/out giving you artificial sugars such as gatorade-you can buy it at Wegman's in the Health food section.  You can also take liquid vitamins-they are easier to digest and absorb better in your system.  Lizzie suggested 1000mg os vitamin C, you can get something called Emergen C which is in powder form, you mix it w/ 4-6 oz. of water, it also has a good amount of B vit.  I can only take half a packet a day due to continued healing & my surgery was 7/08-you can get this at any health food store, Wegman's, or Sam's Club-Sam's is the cheapest.  I might be able to help you out with some foods-I have a pretty restricted diet due to an intolerance to wheat but if you need some help you can email me, let me know and I'll give you my email.

Hang in there, take one step at a time and know that there are many of us praying for you.

Hugs,

Judy

Posted 10/19/2008 7:11 PM (GMT 0)
i was on this chat room i need answers from someone on this subject i went to a gi specialist due to the fact last 3 years i have been laxative dependent and have to take milk of mag almost a full bottle to go and then i have severe diahrea and if i eat a bite of food i have to run to the rest room in the next 5 seconds my G.I. Dr. said he wanted to do a colonoscopy and i took osmoprep pills every 15 minutes plus dulcolax morning of scope i even did 2 enemas but i never went so i told dr b4 he put me uner he said i have to do 2 days of prep, i did 2 days of laxatives and he tried to do the scope an he said he couldnt get far so it was a failed attempt #2 the dr said i had to have a sitz marker test i had to go to his office and take this capsule filled with 24 sitz markers then have an xray in 5 days to see how many were left in my colon and 24 were left.My G.I. Dr. said he has never had a patient that had all of them left he wanted to try rx called zelnorm which the fda recalled due to people dying he said i needed to see a colon surgeon i saw the surgeon, who is a woman and she said i nee 1 more test called a defogram,she said i would be cut vertically i have my follow up this week i had to travel 3 hours to a hospital that is the only 1 that does this test i hated it and i asked the radiologist that did the test to tell me if the muscle worked he said it doesnt look like it relaxed ,so he said it doesnt work. my surgeon initially was saying a colon resection but i have been online and they have to have entirre colon removed is that why the surgeon ordered this last test please email me anyone
Posted 10/21/2008 12:36 AM (GMT 0)

Hi colon gone crazy,

Welcome to this site!  There are a lot of wonderful, knowledgable people hear that have experienced just about EVERYTHING you can and cannot think of.  We are always willing to help a new member as it is very scary and frustrating to be just starting out.  First off, if you are seeing a doctor that you are not quite sure about or not real confident in, you need to find a new one.  I have had 5 GI doctors and have traveled 6 hours away from home.  This dr led me to one 3 hours away & I traveled there repeatedly for tests, at one point daily for 3 weeks except for Sundays; so it is worth getting a dr you trust and who is extremely knowledgable in colonic inertia/slow transit.  I had 50 markers that were still in my system after 3 weeks so I know what it's like to have a slow system; I also took a prep for a colonoscopy prep that stayed in my system for 10 days even though I was taking 3 double doses of Miralax, 4 tablespoons of lactulose, 2 tabs of amitiza & 4 fiber choice.  Know matter how much prep I took nothing would clean me out.  I finally had a subtotal colectomy even though my rectom was not fully functioning in 7/08 and things have been 100% better.  It takes your body a while to adjust and mine still is but I have never regretted having the surgery.  If you would like to talk more or have questions, I'll give you my email, just let me know.

I wish you the best and your in my thoughts and prayers :-) ,

Judy

Posted 10/21/2008 2:41 AM (GMT 0)

Judy  or anyone chatting

thank you for responding. Have you had surgery yet? i can't believe your Dr.'s made you go through all that! why? and I do have faith in my G.I. Dr and I have one of the best lady surgeons who is only a colon rectal surgeon. I have my appt with the surgeon tommorrow and that is when my fate will be sealed. This will be the second appt. when i saw her 2 weeks ago, she came in the exam room and told me which way she is going to cut me and she said my  belly button riing has to go. She said she just wanted 1 more test and that was the defogram that i had done  last wednesday. I just wanted to know what this tells her and if i failed the test or my pelvic floor muscle did, i have read all the info from patients on this subject, that it means she has to remove the entire colon and have a bag??? is that what this means because prior to saying i had to have this test she said a partial but i think my colon is past the point i hvae tried everything i have have given myself needles in the thigh,its a new type of laxative but not a thing works until i take a whole bottle of milk of mag then i go the opposite of constipation it is like water pouring out of me and if i eat or drink anything i have to run to the bathroom in 5 seconds. can anyone answer my question? my gi dr. said surgery is the only option i had left. I heard the surgery is very difficult!

Posted 10/21/2008 10:38 PM (GMT 0)

Hi colon gone crazy,

I had my surgery in July.  I had an open surgery instead of a laparoscopy due to many previous abdominal surgeries.   I had my small intestine attached to my rectum.  I had an anorectal manometry done before my surgery that said my rectum was not fully functioning but my dr decided to go ahead with the surgery anyway.  This is a major surgery so you need to be mentally ready to have it done, but most people who have gone through all the things we have are willing to do anything at this point.  I was only in the hospital 5 days & my surgeon used an epidural after my surgery for pain control which was the best thing ever even though you have to have a catheter during the time of the epidural, it was well worth it.  Some surgeons also give you an NG tube which goes through your nose into your stomach for a day or two-to be honest, that was probably the worst part of the whole surgery even though I've had one before.  You will end up going to the bathroom anywhere between 15-25 times a day to begin with; I know that sounds like a lot but if you are anything like me, it was so much better than what I was going through before.  Slowly your small intestine will learn to take over, I now go anywhere between 5-10 times a day.  I have to still figure out what foods bother me the most, it's a trial and error thing, but I already have many food issues already.  Your dr will usually put you on a low residue/fiber diet for a little while, I'm still on this diet and it's been 3 mos. so every dr varies.  There are a few little quirks that you have to get used to, but as I said it's so much better than the alternative.  I hope I helped you out some, if you have any more questions, just ask or email me @[email protected].

Thoughts and prayers are with you,

Judy

Posted 11/1/2008 1:35 PM (GMT 0)

Hello everybody,

It has been very good to me knowing about this Posts.

I had mine total colectomy laproscopically last 16Oct2008. One week at Hospital. I'm recovering at home.

I'm 40 years old male. Lynch Syndrome and after a colonoscopie I had Total Colectomy. Worst situations in the 2 days after surgery. Lots of pain. Vomiting once and had to be tubbed again (worst experience). I always tried to get up and walk on the Hospital. Walked always I could. Going to WC every hour in the 3 or 4 first days. The most difficult was to get some good sleep.

Now at Home recovering. Going to WC 5x a day. Sleep well. Recovering well. Still can´t eat somethings (fibers, milk, and so on). Feel weak but eating normal quantities.

Glad you've shared your experience.

Posted 11/3/2008 9:57 PM (GMT 0)

 hey everyone,

took me a few months to read all total colectomy parts 1-19. i have learned SO much from reading all these posts and all of you ladies are absolutely amazing - thak all of you so much for sharing your stories. i feel like i know each and everyone of you so well.

so as i'm finally here, suddenly everybody stopped posting. where did everyone go redface ???

so i figurred idea ...  i guess it's my turn now smilewinkgrin .

i'm a 35 yrs old female from israel, have been struggling with sever cronich constipation for 15 years now, had the zits marker test twice and all 24 markers where still in my colon after 5 days. i was supposed to go on with the x-rays, but didn't know that that what i was supposed to do, and right after my second x-ray i went straight home to cleen my self out. just could'nt wait to do that. but i think, if i wasn't in such a hurry to do that, maybe we would have had a better idea of what's going on. but anyway docs. say that if after 5 days it was scatered hroughout the colon and has only progressed to the sigma and hasn't even reached the rectum, that it's indicative enough for determine CI.

so i can't go to the bathroom w/o the help of an amamzing amount of laxatives, though after reading all the many posts, seams like i don't have the worse situation, comparing to most ppl here.

for me, w/o the laxatives it's somewhere around once in 7-8 days, (small amount though) which is also bad enough, BUT i can't imagine not going at all for a MONTH!!!! like a lot of ppl here used to before their colectomy. how awful that must have been shakehead .

so anyway i'm so confused right now. i just don't know whether to go on and take the laxatives for the rest of my life (since i still manage to get that brown stuff out with them), or whether to go for surgery. my gi and sergeon say surgery, but i'm just so scared that maybe because i'm not one of those worse cases, maybe my situation is bad, but not bad enough for this sergury, and i end up having diarrhea 20-30 times a day, or maybe with my pelvic floor dysfunction i'll still be constipated and have a lot of gass, and from what i've read here, the gass post-op are the worse!!!!

just have NO IDEA what to expect after surgery  confused

but on the other hand, when i take the lax' i'm bound to my home for the whole day. can't take lax' and go out.

my life revolve around the loo. it actually controls my life.

i'm just so confused, and i also think that maybe after 15 yrs of being like this i kinda got used to it and i'm suddenly so scared of a change, if that make any sense.

or maybe i'm just a BIG wimp (sp?)

oh well, i guess eventually i'll manage to make the right decision eyes .

so thanks for reading my post

good day all.

 

Posted 11/3/2008 10:35 PM (GMT 0)
fogot to mention i had starr procedure on 6/2007. didn't do anything for me.
first 3 months post starr it looked like things are starting to move, but after 3 months or so it returned to the way it was before, and getting worse and worse, so maybe the TC is the right thing for me?

i'm just sooooooo scared......
Posted 11/4/2008 1:53 AM (GMT 0)
2b,

You sound just like me....many years ago.  When I was you age, I was taking laxatives once a week, and that's the only time I could go.  It all started when I was around 19 or 20, and that's how I've lived my life.  As I got older though, I can't wait 7 days, so now I take laxatives every 4 or 5 days.  Like you, I'm stuck in the house for the entire evening if I take the laxative at lunch time.

I'm 53 now, and I'm planning on having a colectomy early next year.  I'm scared to death, but over time the laxatives don't work as well as they used to, I'm having to take more and more, and I just don't want to live like this anymore.  I've had all the tests, and my dr. recommends the colectomy.  I'm still scared to death though. 

I'm not sure what will help you decide; I was told when I was about 35 I had CI (after my first sitz marker test) and would eventually need this surgery.  I didn't want to think about it then, but after a couple of really bad constipation problems (last year went for 15 days without going) I don't want that anymore.  I'm just praying the surgery will be successful...

Good luck to you, and keep us posted.  There's so much information on this website!

Janie

Posted 11/4/2008 1:55 AM (GMT 0)
Forgot to add, I also have pelvic floor dysfunction. I just went through 4 months of biofeedback, but to no avail......also just had cystocele surgery last week, and have a rectocele, too. My dr. recommended Starr surgery, but changed his mind after biofeedback and said we can always do that later, but he really doesn't think that it will help without the colectomy.
Posted 11/4/2008 10:41 AM (GMT 0)
janie

thanks so much for replying my post :-) !!

how are you feeling now after your surgery? what is a cystocele? was it a hard procedure? how long were you in the hosp.? i hope you're doing ok.

i must agree with your dr. since i've been there and the starr doesn't help with our condition, unless you remove the colon, cause our main problem is our colon not doing it's job and less the rectum. but i think it wouldn't hurt to fix the rectocele too, cause it's like the plumbing is all messed up and should be replaced (in our case removed) but if the faucet is also broken, than it should be fixed too.  

i wonder though, can they do it all in one surgery, take the colon out and fix the rectocele both at the same time?

i've just finished my 3 months of biofeedback too. the computer shows i've improved, but i feel it's worse. go figure.

i wish you the best of luck too and that your coletomy is a smashing success yeah !!!!

do you have a date yet? be sure to keep us posted.

Posted 11/6/2008 8:34 PM (GMT 0)
hi 2 RIS k,
i hope you're reading this. i'm new to this forum, but i've read your posts and i just wanted to know how you're doing? when was your surgery again? i feel so bad for you ending up with a bag, i hope you're not too discouraged, you have to remmember it's only temporary.
how are you deeling with it? how is your recovery progressing? do you feel any better? how are you deeling with food, what are you eating?
it's been a while since you last posted, i hope you're doing ok.
take care
Posted 11/10/2008 5:13 PM (GMT 0)
Thanks for asking about me. I'm doing ok now as long as I watch what I eat and don't do too much. I made cookies on Saturday - BAD IDEA. I am still paying for that. It took me all afternoon because the recipe I have makes 11 dozen cookies and I am still so sore from standing so long! But it was worth it because they are my husbands favorite cookies.

My surgery was September 22 and everything went well for the first couple of days but then I started getting sick and having more pain. On the 29th I had a CT scan at 1130 at night and they rushed me to surgery immediately, apparently I had a tear in my intestine and it had been leaking toxins into me for four days. It took them five hours to clean me out but I had a really bad infection. I ended up staying in the hospital for three weeks.

I'm dealing with it just fine on a day to day basis. I finally got the hang of it as far as taking care of it and emptying it, etc. My husband helps me change the wafer and stuff. The only time I have a problem with it is when I see myself in the mirror like before I shower or something and I'm standing there naked with this bag hanging off my body. It's absolutely hideous and I just want to cry. As long as I don't think of that or see myself like that I'm fine.

I feel pretty good as long as I don't over do it. I feel a lot better than I did and every day gets a little better. As for food I still eat bland food. I had toast for breakfast this morning. I eat things like chicken, ham sandwiches, potatoes, noodles w/butter, cereal, scrambled eggs, meatballs, whatever I think I can tolerate. I have a list of things I can't.

Thanks again for asking about me. I hope you learned from my posts that helps you. Keep in touch
Posted 11/10/2008 8:09 PM (GMT 0)

hey 2 ris k,

thanks for replying my post. i guess i remmembered you more than others b/c of your bad complication that made a significant impression on me (pls forgive my lack of vocabulary - english is not my language, it's hebrew, but i'm trying my best).

OMG!!! what an ordeal you've been through, but you sound strong and hopeful, and that's so wonderful!! it's amazing how when we have no choice, we can cope with almost any situation.

hang in there, Dec. 15 is very very close and you'll be one happy girl looking in the mirror...

i'm supposed to have the surgery sometime in the near future, but i'm really really terrified of the outcome. i'm scared that the outcome will be worse than what i'm having now, and the thing that scares me the most is what if i won't be able to be around peaple at all anymore and won't be able to work b/c of incontinance (sp?) or really juicy gas for the rest of my life?

there is a big list of some more things that sceres me, but the obove mentioned are the most.

i guess there's no real cure for my fears, except for just trying to be optimistic and hope for the best.

i hope and pray for the best of luck to all of us here. all we want is to just poop like everybody else tongue lol.

Posted 11/11/2008 12:48 PM (GMT 0)

Hi Hodaya,

Please don't be afraid.  You must choose a surgeon who is experienced in this condition.  You do not want to be on anyones learning curve.  Yes, in the beginning you may have frequent BMs but as your small intestine adjusts, these will decrease.  And, if that doesn't happen, there are medicines such as immodium and lomotil that can be used to help with the situation.  Life going only once every 2 or 3 weeks is no life at all.  Your body is toxic from not going to the bathroom often.  I had my surgery in Jume of 2006 and yes I went frequently but now things are much better.  I never had an accident.  You need to know that after eating, you will need a bathroom about a half hour later and you plan for it.  I can eat any fods that I want to.  Life is so much better now and so will yours....

Any questions please feel free to ask...

Phyllis

Posted 11/11/2008 8:28 PM (GMT 0)
Phyllis,

:-)  thanks so much for replying my post. you're so kind and encouraging. your post made me feel better, thank you so much!! 

i've been following your progress and even with your frequency i consider you one of the success stories here and you've really been an inspiration to me. and i was very happy for you when i read that with the lomotil you're doing so much better. i wrote the names of the medicines down and will ask about them, hope we have them here in israel though.

maybe it sounds stupid, but one of the things that i'm worreid about is gas problems. i'm suffering with a LOT of gas all day long. i'm wondering does the gas problem gets worse/stays the same/disappear after surgery (pls say it disappears...)? if i'm a VERY gasy girl now, does that mean i'll still be like this post op, i mean is it like once gasy - always gasy?? it bothers me b/c from what i've read here, the odor of the gas post op is really really dreadful skull !!!! how can i be around ppl if i stink so bad sad ???? does the odor moderates with time? did most of those who had the surgery got rid of this problem?

oh, so many things to worry about...

phyllis, you are so supportive and kind and it really helps to be able to talk to ppl who suffered/still suffering with the same condition and understand. this site is really a G-D sent, thanks again from the bottom of my heart.

well, it's getting late for me, i'm going with the wind (gas) now.... tongue (Pardon me blush ), night.

Posted 11/11/2008 10:14 PM (GMT 0)
The gas problem for me is minor....   Have a good night

Posted 11/11/2008 10:21 PM (GMT 0)
raelly??? but did you have any gas problems berfore your surgery like me and then it disappeared, or you never had it bad like me?
now i'm really going to sleep.
Posted 11/11/2008 10:44 PM (GMT 0)
I had problems before...
Posted 11/11/2008 11:36 PM (GMT 0)

Hi all....

I have been reading all the new posts and new people....welcome:)

Just thought I would check in. It has been 9 months since my surgery. and most of you know of all of my complications. I started biofeedback over three months ago and last week my PT told me she did not think it was doing any good and that I should stop. I was very depressed and have not told my surgeon yet. I saw him about 6 weeks ago and he was concerned I my have the inability to relax my rectum and said he was running out of options. I have not called him yet to tell him the news about biofeedback.....i am just so frustrated. I am back up to a little over a bottle of milk of mag a week in order to go and he does not know that yet either.

This weekend I was in the ER with what they thought was a bowel obstruction. It turned out to be three hemorrhagic cysts and one had ruptured. I am still inconsiderable pain and on vicodin whcih slowms my bowel even more. I am very depressed and discouraged at this point. I do not know what to do or if I should call my surgeon and let him know whats going on? I just cannot take this life anymore. I feel like crap. look like a ghost and feel weak. Sorry I just needed to vent.

To all of yo unew peepes....I hope that this site helps as much as it did me. I will always answer any questions I can

2 ris k- I have been thinking about you a lot. I am glad to hear you are feeling better....each day you will regain your strength. Dec 15 will be here before you know it....what a perfect christmas gift:) I will continue to pray for your strength and healing.

To all of you. Hope you are well.

Lizzie

Posted 11/12/2008 2:44 AM (GMT 0)

Hi Everyone,

Haven't posted in awhile, almost feel guilty when knowing what a rough time some of you are having; but know that you are in my prayers.  I had my 4 mo. post op appt w/ my surgeon & GI drs. today.  My surgeon released me. smilewinkgrin   My GI dr kept me on a restricted diet, low residue, I can introdue cooked veggies slowly but need to watch food intake due to right side pain/spasms.  I have anywhere from 3-8 bms a day but I don't mind, this is like a God send compaired to my old life.  I feel 100% better,  have worked full time (teacher) since 6 wks after surgery, am still adjusting--am usually very tired  at end of day and by Friday--exhausted.  I don't do much extra yet, have had the luxury of hiring a house cleaner, didn't want a hernia.  I do laundry, ironing & so forth though, just no heavy cleaning & lifting. 

I will always strongly encourage anyone who is even thinking of having this surgery to have it; it has changed my life completely.

2RisK--I just want to cry when I read about the difficulties you have had & especially when you say it's hideous; please,please remember that there are many of us praying for you and that this will soon be over and your life will be better.

2B Colon Free--I know this is all scary, but not everyone has complications. I had an open surgery and spent only 5 days in the hospital the least amount ever for my dr.  I didn't have any complications this time,& I have been the queen of them in the past---pancreatitis several times, adhesions, etc.  Also I want you to know that I had a severe problem with gas before the surgery and I don't now, so hopefully you won't either.

I wish everyone much healing and good health!

✚ New Topic locked
12345678910111213