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TOTAL COLECTOMY PART 19

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Posted 8/31/2008 4:25 PM (GMT 0)
Psygirl - thanks for all the info. I wish my surgery was a lot closer than

the 22.  I am nervous about it and all I do is obsess about it; I can't even sleep at night because it's all I think about.  Everyone talks about the 3 day prep before the surgery, but no one has mentioned what is involved.  I'm sure it's similar to the colonoscopy I had, I had a 3 day prep for that.  I was on a clear liquid diet for 2 days as well as taking several laxatives, then I couldn't eat the day before and I had to drink the golytle stuff.  It was awful!

Ananym - I don't know how you did this all on your own; you are amazing!  I keep reading everyone's stories and I can't believe how courageous everyone is.  I only hope I go through this as well as you all have.  I have been through so much that you would think it made me stronger, but instead I seem to have a roll over and die attitude. That is according to my husband.  I'm just so sick and tired of being sick and tired, ya know? 

Before and during all this I've had back problems, and before that I went through many many problems with my ovaries, etc. which I had several surgeries for and eventually a total hysterectomy which was an ordeal in itself.  I had many complications with that.

Oh, I also wanted to mention that my surgeon is going to do a laporoscopic/open surgery combo.  Apparently she doesn't want to keep me under that long and also, due to my other surgeries she's not sure how much she'll be able to do through the lap because of adhesions, etc.  I guess we'll wait and see.  When they took my sigmoid they did it open so between that and my hysterectom I have a scar from my navel to my pubic bone, and then I have my c-section scar as well.  What's more scars?

Anyway, thanks again for replying to me. This site is truly a godsend. 

Posted 8/31/2008 7:15 PM (GMT 0)
2 ris k,
The prep for the surgery is the same as the colonoscopy prep, unfortunately. I know how you feel about that gatorade stuff. it was way too filling and it made me feel like I was going to blow up. Don't worry about the surgery date, it will be here before you know it. I was obsessed as well with my date because I thought it would never come and all I could think of was " when am I gooing to feel better and that I would have to suffer so longer'. It came and went and it was the best thing I ever did. even with the diareah, and butt pain from going to much and having to adjust my eating in a big way, It is a lot better than suffering in pain and not being able to move and get out of bed because of aches and pains. Well, good luck and I am glad to answer any questions anyone has.
Posted 9/1/2008 4:00 PM (GMT 0)
Thanks for such a great response. I'm sure I can go through the prep one more time knowing the end is in site. I go in three weeks from today!!

I did think of a couple of other questions. I'm sure I'll have a million more! While you were in the hospital, were you able to take your normal daily medications? (if you have any) I take a hormone every day due to my hysterectomy and I also take lexapro everyday. I'm just wondering if I'll be able to take those right after surgery or not. I can't imagine not taking my hormone for several days!

The other question that I don't think has been addressed yet is alcohol. Are you able to have a glass of wine with dinner or anything? I'm curious as to how that works now. Also, what about carbonated beverages? I've noticed in several places people mention that they don't drink them, but what happens if you do? And, does the dr. tell you not to? I normally drink one diet coke every morning. Will I have to give this up?

Again, thanks for any help you can give.
Posted 9/1/2008 5:41 PM (GMT 0)
2RisK-

You need to ask your doctor about your medications -- they'll probably tell you to bring them to the hospital with you; they'll tell you everything you need to know before you get there. As for drinking -- wine, sodas or whatever -- unless your doctor says you can't have something, go ahead and try it, if it doesn't agree with you, you'll know the answer. Everyone's system is a little different. My doctor really encouraged me to get on a regular diet and get back to a normal life as quickly as possible, which I did. I can eat or drink absolutely anything I want, but I know that's not true for everyone. Being on this forum really freaked me out prior to surgery because everyone talked about their bad experiences. I had good and bad days coming out, but all in all, it went well. I knew I was moving and starting a new job shortly afterward, and I had to be well to do it, so that's what I focused on. I exercised a lot before surgery to build my stomach muscles and back support -- I had a lot of back pain in the hospital. I also walked constantly at the hospital -- it helps you heal and they really encourage you to get up and around; it also helps with the back pain. My hospital actually had signs on the wall to tell you how far you had walked; 4 laps around the floor = 1/4 mile, so I would do my laps for about a mile each time -- I got in about 4 miles a day; it's not like there's anything else to do in the hospital anyway. It's also important to try to get off the IV pain meds as soon as you can -- they work great but it's not real life. It's been about 7 months since I had the surgery, and I'd say the surgery was a success. I'm dealing with the severe anemia now, but it sounds like no one else has had this problem so could be completely unrelated to the surgery. Good luck.
Posted 9/1/2008 6:34 PM (GMT 0)
2 ris k,
after my surgery, I was able to take my nexium and my lexapro okay. I also take lexapro because of depression, just 20mg. 2x day. I was taking a vitamin before the surgery, but i have not since, because I am not sure if I am able todigest one or if it would go through me, so when I see my surgeon for a follow up tommorrow, I will ask him. I have heard from being on this board that there are some meds that can be digested and others that can't. As for alcohol, I never drink because I am a diabetic, so I am sorry if i can not answer that one. Even the soda one because I do not drink soda even before my surgery because it causes alot of gas and other problems for me, so again I am sorry about not being able to answer that one. Usually after your surgery, on the first day they did not let me take my meds because you could not drink or eat anything, but Ice chips, anyway and your system is usually not ready to have anything in it right after the surgery. On the second day, though they gave me my lexapro like usually. As for the nexium, they ended up giving me protonix through my IV. I am not sure why but because my nexium is a gel cap and it is for my stomach, so I guess because nexium and stomach meds digest to fast and they felt it would not work because it would gop through too fast to digest. They did this until my 4th and final day, when I finally got to take my meds as usual, both the nexium and lexapro. well, Good luck and i hope this at least answers some of your questions. Keep asking those millions of questions. I am willing to share.
Posted 9/1/2008 6:37 PM (GMT 0)
P.s.,
as for the meds, The hospital told me not to bring mine, but i had to have a preadmit test a week before the surgery, because they do that at the hospital where I had mine. They had someone ask me about my meds, and dosages and other instructions and health problems, so they would know what to give me during my stay, so I did not have to bring mine.
Posted 9/2/2008 4:24 AM (GMT 0)
Wow! I am so grateful for you two for answering my questions. Psygril and Ananym you are great! I'm glad your surgeries turned out so well. I know what you mean about the sodas Psygirl, they really kill my stomach and make me bloated, that's why I only drink one diet soda a day, but I love it!
As for the walking, that's great advice Ananym. I was just thinking today that I need to make sure I exercise and walk as much as I can before my surgery so that I'm strong and can recover quicker.

Today I've been going to the bathroom and having cramps really bad all day. I took 3 MOM capulets on Wednesday of last week and I think they are just now working because I had diahrea (sp?) all day and I never have it. We took the boys to the zoo today and I kept running to the bathroom. The funny thing is that no matter how much I go to the bathroom, if I squish or push on my stomach it makes these really weird slushy squishy noises. It does it all the time! I even pushed on my stomach and mashed on it so my doctor could hear it. It's really strange, it's like you can hear a ton of water swishing around. But, like I said, it does it all the time. My doctor says it's definitely not normal. I told her, well I figured that!!!

Well, I'm getting ready for bed since I have to work tomorrow. It's my birthday tomorrow!!! I'm hoping this will be a great year after my surgery.

I can't tell you how much it means to me to have all the support from everyone on this board and to read everyone's story. Even for those of you who are busy and haven't replied yet or whatever, just the fact that you posted your stories really helps, and I will do the same when I have my surgery.

Good Night!
Posted 9/2/2008 10:16 AM (GMT 0)

Hi 2ris k

I just read your post and i also hear my gut sloshing around when i press and massage my tum.  sometimes this helps to move it.  it is obviously all the crap which is loose and not moving through.  i take lax everyday - i cant take laxatives if i am out all day though or i will get caught short.  if i dont take laxatives then i dont go at all. cry good luck with the surgery - around 9 out of 10 folk on here seem to have found it successful.

karen x

Posted 9/2/2008 2:29 PM (GMT 0)
Happy Birthday 2 Ris K,
I hope you enjoy it.
Posted 9/2/2008 3:08 PM (GMT 0)
Thanks for the birthday wish psygirl! It cheered me up today. No one at work remembered it's my birthday even though they asked me about it on Friday. You made me smile! I also wanted to let you know that I read back on several of your posts and we are so much alike! We are close to the same age and we both have had rectal prolapse surgery and now this. There was more that we shared, I just can't remember right now what else!

Karen, I'm glad to know I'm not the only one with those sloshing sounds. No one had mentioned them before and like you, I've discovered that if I push or mash on my stomach it helps things to move. Sometimes when I'm on the toilet I can sit there and push in it from side to side and after a few minutes, if I'm really really full, some gas or a little of the 'other' might come out. I thought I was weird that way and I've never told anyone but the doctor before this.

Amanda
Posted 9/4/2008 11:29 AM (GMT 0)

Hi Ladies,

It's been a while since I have posted.  Ih ad my surgery June of 2006 and never ever regretted my decision.  I did go to the bathroom between 15-20X a day.  However, since finding a great GI doctor who listened to me and with a little trial and error, he placed me on Lomotil and miraculously I am down to 6X a day which is great.  I really do have my life back.  For those having surgery there really is no other course to take and for those who have had there surgery be patient and make sure your doctors listen to you.

Take care

Phyllis

Posted 9/5/2008 10:44 PM (GMT 0)
Phyllis, I have been reading all of the total colectomy boards and I have been following your story as well. I want to thank you for posting as it has been a great help with lots of information.

I have a question for all of you though. Obviously I haven't had my surgery yet, but before your surgery, when you used and enema what kind did you use?
Posted 9/6/2008 12:05 AM (GMT 0)

I used a regular enema bag with warm water....Multiple ones...maybe 5 to 6 in one sitting )no0 pun intened)

I was so sore and absolutely worn out after the seesion that maybe lasted 1.5 hours....I did get a l;ittle relief....

Now, no pain and I am just so happy I went through with it.  It is a big decision and big surgery and you have to give yourself time to heal. 

Good luck to you

Posted 9/6/2008 4:57 PM (GMT 0)

2 Ris K

I had my surgery Feb of 07 still dealing with the outcome, trying to find foods that agree with me, my appeatie is terrible, just remember no matter how much pain you are in after the surgery walk, walk, walk. If you read back on my threads I did not walk right away and I was in the hospital for 13 days.

I have a question about your previous surgery a total hysterectomy. I am due to haveone next month, if you could email me about this it would be great.  Thanks

email:  [email protected]

This formum is great for everything, just remember everyone's system is different and will heal differently.

HAPPY BELATED BIRTHDAY :-)

Posted 9/8/2008 3:23 PM (GMT 0)
Ok, I have another question. Maybe it's not so much of a question as it is a confession...I am extremely scared!! Two weeks from today!! I keep thinking of all the things that can go wrong. I also keep thinking about after the surgery. There will be nothing left in my stomach, I've had a complete hysterectomy so I keep imagining my organs just free floating in there. Not only that, but what if I get injured or in a car accident or something. There's less stuff there to cushion it. What if it ruptures and I die? My gosh, there are so many things that can go wrong during and after this surgery! Will it shorten my life for any reason?

I keep telling my husband my fears and he is very supportive and understanding, but he doesn't want me to worry so he just keeps telling me that none of that is going to happen and it's all going to be fine. I feel like he's dismissing my feelings, but I know he's trying to keep my panic down.

Did everyone have these thoughts? Do you have them now even after your surgery? I'm about to throw myself into a panic attack. I seem to have divided my life into two parts; before surgery and after. For some reason I feel like after will be bad. OMG I'm so afraid!!!
Posted 9/8/2008 7:13 PM (GMT 0)
2 ris k,
I know how you feel. before my surgery, I was afraid to. but life after surgery is much better. I know that there will be discomfort and you will feel that the parts are loose for a bit, but they will eventually tighten up. When I got my colon taken out, my body felt like there was something missing and my small intestine was always floating and moving around, especially after I ate. It has taken a while, it has settled down. Even though the end of the small intestine is connected to the rectum and has moved a bit, my small intestine is finally at a space where it feels comfortable. I think, it is like you had small living room and now you have a big living room and all you had, and only still have is your couch, table, T.V. and a T.V. stand. In the small apartment all your stuff fit kind of crowded or perfect. But in this larger apartment, when you put this stuff in it, I looks like you have nothing and the space looks empty, so you keep moving it until it looks like your living is not to bare and boring. but here's the thing though, even though we can move and buy things for the large living room, the small intestine can not, especially when we are having the colon taken out without any things else going in. So your small intestine, even though it is going to stay in place and not get up and actually move, but is trying to find some kind of way to figure out how it can live in this huge space, so it kind of gets a little confused, but also jiggles around a bit because it has all this room. but eventaully, the small intestine gets used to this room, and on top of that when your stomach heals up, it will probably adjust the insides by the stomach and other muscles will fill in that space so that the small intestine and will stay put and not jiggle, and you will not have a big hole in there anymore. Everything adjusts , but it does take a while. Well, I hope you find this helpful. Good luck in your surgery and I am here for you and everyone else as well. i know surgery is scary, but everything will go great, the stomach will straighten out, you will feel better and you will feel like a newborn and start to have a new enjoyable pain and sick-free life.
Posted 9/10/2008 11:23 AM (GMT 0)
Hello all,

 

Let me start by saying I am SO relieved to find a group like this one because I have felt isolated through this whole ordeal. cry  You all seem very suupportive and helpful, and I hope I can find some peace of mind... 

 

This is my first time posting and I'm really looking for some advice from someone that has a situation similar to mine so let me just tell my story:

I'm a 23 year old female standing at about 5' even. I first started noticing slight constipation issues that were very sporadic and infrequent about three years ago. Before this point, I had NEVER had any issues as it related to BM, cramps, etc... At the same time, I stopped having my period and continued not to for several months till my gyno started me on an intense hormone booster that got my monthlys somewhat back to a norm, but still have never been quite the same. (And the only reason I mention the period thing is because my GI and surgeon talked about the correlation all the time).

The constipation got steadily worse over time and I finally was directed by my physician to see a GI two years ago. Well she ordered me a colonoscopy, which I had and it came back normal. After the normal colonoscopy, she kind of wrote me off and didn't see any point in continuing.. saying that it must be stress and just to get my hormone level regulated and everything should eventually normalize..

So I let it go another year, convincing myself that I must be crazy and it was all in my head.. But I still had overwhelming constipation, 24/7 bloat, fatigue, irritability.. I just was NOT the same person anymore and knew something just was not right.. not to mention a newfound addiction to laxatives because I just didn't know what to do anymore. So the constipation continued to get increasingly more prevalent, until it got to the point it is now.. which I would deem severe. But unlike many other people who I hear lose weight from this experience, I was putting it on at an alarming rate and still am... I went from weighing 120 to now about 140, which on my 5 foot frame is not normal.

So finally, after waiting a year from my first GI consultation.. and after the constipation, bloating, depression, anxiety, irritibility, laxative cramping was making me cry myself to sleep every night.. I went and saw a different GI and decided to start over again.. It's all been too much just to be in my head.

Well the new GI has been PHENOMINAL and he genuinely cares.. Well he put me through x-rays, CTs, the Sitz-Marker, and Defcagram test. The Sitz-Marker showed a severe problem, which immediately made him refer me to a surgeon. My surgeon (who I also love dearly, bless both their souls) put me through a Pelvic Floor test.

 

Long story short, I'm scheduled for a total colectomy (no bag) in December. But, here is where I want advice and hear from a similar situation...

The more I read about testimonials, studies, etc. regarding a colectomy... It seems all the people who have undergone this have had a COMPLETE halt of bowel movement prior to surgery... I can still have some type of BM (95% of the time diarhhea though) when I take laxatives, or atleast certain laxatives. So my colon is not completely unresponsive... But my surgeon has told me that this condition is very degressive and only gets worse over time, which is why my condition has deteriorated over the past few years. He also told me it is all about a quality of life too.. That it's not like I would die without the surgery and that I probably could live out the rest of my life off laxatives if I wanted to deal with my current symptoms all the time.. But that if I didn't want to live like that anymore, then he said surgery was my only option. Which I'm comfortable with.. these last several months in particular have had me praying for relief and I'll do ANYTHING not to feel this way anymore.

 

Which brings me to a few questions:

Did anybody else undergo this surgery even when they were still able to atleast experience SOME type of bowel movement?

Did anybody develop an additonal problem with hemorrhoids with only lended to blocking an already escalating problem??

Did anybody GAIN weight in the time preceeding their surgery?

 

Thank you all SOOOOO SOOO much for any help/advice ya'll can bestow!!!

 

Posted 9/10/2008 1:11 PM (GMT 0)
Hi Absbabs

I am twice your age and been having bowel probs for over 10 years now....see below.

yes it is about quality of life - i am glad they picked this up for you now rather than later...

i also go to the loo - twice day if i can - but with the aid of senna laxatives - i have been slowly increasing them for the last year - all becasue of a sigmoid resection done last year due to obstruction.  my bowel just didnt work on its own after surgery (although i was diagnosed with a slow transit prior, but only needed 1/2 senna per day). 

so yes, we do need something happening dont we?  cant go on like this forever.  yes mine is somewhat diarroeah , though not always,  but most of the time is is inefficient and i also take 30 mins or so to feel like i have been to some extent, plus the feeling is urgent.  i have put on around 10 1bs since last year - but i work from home now so i get NO exercise...too tired anyway.  what lax do you take? i hope to have the surgery this year if poss....

karen x

Posted 9/10/2008 1:12 PM (GMT 0)
Absbabs,

Welcome to Healingwell.

Your surgeon is correct - CI does not improve it only gets worse over the years - at least for me it did. I did gain weight in the last 5 years of my CI and I mean a lot of weight. Yes, I did have a problem with hemorrhoids and big ones. Since my surgery (3-12-07) I have lost ca. 95% of the weight I gained and my hemorrhoids have disappeared.

People here are very helpful and I'm sure someone will come along who can answer all of your questions.

But again Welcome.
Posted 9/10/2008 2:20 PM (GMT 0)

Thank you all very much. :-)

As far as the laxatives go, it's the strangest thing. I have been put on perscription lax at two different points- Amitiza, I believe. But both times it didn't do anything but make me nauseous without the added benefit of a BM. Miralax was a failure for me too, which is supposedly the godsend to constipated people everywhere.. Enemas make me nervous, and I've only ever done the Fleets enemas before any of my testing. These too did very little each time.. The only thing that I've found actually does anything for me is Dulcolax. I average about 2-3 of these pills daily or every other day. With Dulcolax I'm usually guaranteed a BM, though it is never solid or normal.

That's a relief about the weight gain.. I didn't know if I was maybe having additional problems that I was unaware of.. I've known one other person to have a total colectomy and in the year leading up to her surgery she LOST 30 pounds.. So i didn't know if weight gain was a common symptom. Everytime I researched slow-transit or colon problems, it always listed weight loss as a symptom.. So I was getting slightly nervous.. 

Posted 9/10/2008 3:53 PM (GMT 0)
Absbabs,

I am so glad you have found this board. You will find it is a wealth of informatin and the people on here are amazing and truly supportive! I am scheduled for my surgery on September 22 and if you've read any of my posts you know I'm very nervous.

Just to let you know my experience with the weight gain, etc. I have been struggling with constipation for years and years and then in December of 07 my colon just completely stopped working. Almost nothing makes me have a bm. I used to take Miralax, phosphosoda, magnesium citrate, dulcolax, etc. anything I can get my hands on, but they stopped working and now nothing makes me go. I have to use an enema just to go and I do that about once a week. As a matter of fact, tomorrow will be a week since my last one and I'm starting to get pretty miserable.

As for the weigh gain, I have gained 25 pounds since December! To me that is just crazy! I'm hoping that it is caused by this condition, or at least in part by this condition. Maybe after the surgery I will lose some or most of it. I've never had a weight problem in my life so this is scary for me too.

Well, you've come to the right place. Keep posting here and let us know how you are doing and when you are scheduled for surgery. Even post if you are feeling miserable and just want to talk. We can help cheer you up and maybe you can help cheer us up when we are feeling bad too.

Again, welcome to our group!
Posted 9/10/2008 4:04 PM (GMT 0)
September 22! That's just around the corner.. I'm sure you are nervous. But what a RELIEF at the same time! Especially with how long you've been dealing with it... I would LOVE to have the surgery sooner than December because I'm at my wits end.. But it just isn't practical for me till then.

I am in school this semester working on my MBA and I'd hate to see all those dollars go to waste that I've already paid for this semester because of my surgery. Also, I work full time also and the couple of holiday days over Christmas will be good to use compounded with the medical time off :) Plus, I live hours away from all family, so I would need to go visit with my mother during my recovery to have her there for me if I need anything... Plus those two weeks (or however long) recovery through the end of the year lets me spend an extended time with my family over the holidays, which makes me happy.

I am going to visit with my surgeon next Friday to discuss a specific date
Posted 9/10/2008 4:54 PM (GMT 0)
It sounds like you have it all thought out. I think December sounds like a perfect time for you. By then I will be recovered, hopefully, and I will be able to give you some tips. That along with everyone else's experience and you should be just as prepared as I am. I feel prepared and I know what to expect, but the only thing I'm really worried about is afterwards and the recovery. Everyone's recovery is different and their food tolerances are different. I wish I knew if I was going to have an easy recovery or a hard one, or if I will be able to eat normal, or hardly anything. I have little bit of OCD and mine is along the line of "I need to know everything" and this not knowing is driving me crazy!

Let us know what your surgeon says next week about your date. Have you read all of the "Total Colectomy - Part 1-19?" They are really really good and if you haven't I would advise you to read at least some of them. I got started reading them and I couldn't stop! I'm up to number 15 now. The women who write on here are amazing!
Posted 9/10/2008 5:05 PM (GMT 0)

Oh, and another question.. and my biggest (only) apprehension...

As I stated, I'm only 23 and very healthy in every other aspect other than my colon/digestive issues and have had no previous surgeries.. My surgeon has suggested a laparoscopic colectomy, which he is highly trained in doing.. He even let me meet and talk to a couple of nurses/staff who work at the hospital that he has performed the surgery on so I could get a comfortable idea of what to expect.. I am thrilled to have the surgery in this method due to the lack of a bag, faster recovery, less pain, etc...

But there is always that risk that complications might arise during the procedure and they have to resort to the old method of surgery... So my question, has anybody gone under with the plan of a laparoscopic procedure and woken up with a bag due to complications??

My situation keeps progressively getting worse, so I would still consider the surgery were laparoscopic not an option.. and I don't mean to sound superficial, but at 23 years old that type of life changing condition is very scary and I do not know how well I would handle that shock..  

Posted 9/10/2008 5:12 PM (GMT 0)

I have had the opportunity to read a few of them and they seem VERY helpful!

I just stumbled on this site late last night, and have read only what I have managed to sneak in throughout the day at work.

But I suppose I should read through it all before I ask the same questions that have been asked a zillion times before.. wink

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