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Total Colectomy PART 3

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Posted 6/28/2005 5:29 AM (GMT 0)
Glad we are still going with this, will have to read back through 1 and 2.  Thanks for the info on the fissure, I don't think I had one, I had so much going on after my surgery that I wouldn't have noticed.
Posted 6/28/2005 5:46 AM (GMT 0)
Hi everyone.

Anything on Zoe? It has been a week so she should be going home soon. I meet with my surgeon tomorrow morning at 8 a.m. I was fortuanate that they squeezed me in. I had my colonoscopy in April and the last 3 months have been hell. I hope I will like the surgeon and be scheduled for this month. For those who have gone through the surgery, are there questions that you would recommend to ask the surgeon?  I cant wait for the consult to be over. Is it Cheryl whose surgery is in September? Was that your choice to wait so long? The waiting for me is the worse. Im anxious to do it and "start living" w/out pain and discomfort. Thanks again Sarah for your words of encouragement. I am so excited after reading of everyones experiences. After 15+ years of suffering it is good to know that there is something that can help.  One more thing... I recall someone recommending  a certain type of diet to follow post-op, does anyone remember what it is called? Hope everyone is doing well or soon to be ..... Gingy

Posted 6/28/2005 6:36 AM (GMT 0)
Gingy,
If you print part 1 and 2 you will have lot's of info about diet and post op, you would also be able to take it with you to the grocery store, so you know what not to buy. You won't believe how much you will go post op, from what I have read, we all had basically the same experience. I would ask about pain medicine post op and what they will do if it makes you vomit/nausea, I was miserable for 3 days and they kept giving me the same stuff, unfortunately for me, it was a German Hospital, so I don't know the names of the meds. I had open and my scar is from belly button straight down, thin line, surgeon repaired old scar from prior surgery, so I think it looks great.

Print LOW RESIDUE DIET, do a google seach, it is only 1 page, and you will NEED IT when you go shopping, best thing I did. Try to shop and stock up before surgery, especially charmin and I recommend huggies baby wipes, trust me, they are thicker than the cottonelle type.

Hope you feel better soon
Posted 6/28/2005 6:39 AM (GMT 0)
Gingy,
If you print part 1 and 2 you will have lot's of info about diet and post op, you would also be able to take it with you to the grocery store, so you know what not to buy. You won't believe how much you will go post op, from what I have read, we all had basically the same experience. I would ask about pain medicine post op and what they will do if it makes you vomit/nausea, I was miserable for 3 days and they kept giving me the same stuff, unfortunately for me, it was a German Hospital, so I don't know the names of the meds. I had open and my scar is from belly button straight down, thin line, surgeon repaired old scar from prior surgery, so I think it looks great.

Print LOW RESIDUE DIET, do a google seach, it is only 1 page, and you will NEED IT when you go shopping, best thing I did. Try to shop and stock up before surgery, especially charmin and I recommend huggies baby wipes, trust me, they are thicker than the cottonelle type.

Hope you feel better soon
Posted 6/28/2005 3:09 PM (GMT 0)

Susan34 said...
Glad we are still going with this, will have to read back through 1 and 2. Thanks for the info on the fissure, I don't think I had one, I had so much going on after my surgery that I wouldn't have noticed.


Hi, I am new here and it has been very nice to read about other people with simular problems as me. I haven't known any one that knows what I am going through. I am having a total colectomy next week and I am alittle nervous about it. I have been struggling with cronic constipation for the past 7 1/2 years and last year my doctor finally sent me to a specialist to find out the problem. It got to the point where I just told them they needed to do something because I couldn't deal with being sick anymore. They did some test and finally the sitz marker test showed that the problem was in the left side of my colon. They removed it last year and up until a couple of months ago I was feeling great. Then all the same feelings came back again and my surgeon decided to do another test. He then said I would have to have it all removed or I would be sick forever. I have decided not to have a bag but now I am worried about all the diarreha I have heard about. How bad is it? Is it better to go through the surgery and have diarreha forever or the pain of constipation and the bloating? I am only 26 years old and I don't want to have the surgery and then have more problems down the road because I did. Any advice? confused
Posted 6/28/2005 3:40 PM (GMT 0)
Welcome MMA! I haven't had the surgery yet but from what the other ladies have said it sounds like the frequent movements are manageable. I am also young (24) and my doctor said this would help my recovery. Are you having open or laproscopic incisions?

Gingy I am waiting until September because I am in summer school right now and plan on taking the fall semester off from classes. I will also be taking the enrolled agents exam in September and because the test is only offered once a year I figured I would tough it out. But believe me, everytime I get the cramps I pray for a speedy summer. Fortunately my insurnace gave the approval for the surgery yesterday. This is a big load off of my mind.

Christina

Posted 6/28/2005 5:11 PM (GMT 0)
Hello Christina,
I am having it done laproscopic again, that is how the surgeon did my last surgery last year. At that point I wasn't working so recovery time didn't matter as much but I am now and thank goodness they are being so understanding knowing that I have to have this surgery to feel better. I just can't wait to know what it feels like to be normal and not sick all the time. My husband and kids are also looking forward to me not feeling so terrible all the time. I think I am just having some pre-surgery jitters. Last time I only had two weeks to worry about it, this time I have had about 6 weeks and my family keeps questioning if I really want to go through with it, which then puts doubts in my mind. I just want to feel better, you know?

Melissa
Posted 6/28/2005 5:53 PM (GMT 0)
MMA, yes it is worth it, every moment of recovery. It is amazing to just go, no bloat, no cramps, you can take immodium if you do get D. it will slow down more and more, I think my body tried to make up for a lifetime of not going and punished the hell out of me, which also caused Hem. but all is better now, I will never eat anything spicy if I can help it, because it burns terribly when you go! What date do you go in? There is a light at the end of the tunnel, I wish you the best of luck! Best thing that ever happened to me, my surgeon is like a hero to me now. Hope this helps you with your decision.

Christina, Glad Insurance is kicking in, I can't imagine what it costs, I still don't have a copy of the bill from Hospital to my ins. company, I didn't have to pay one dime. Lucky to have a husband in the military, they have great insurance and we only pay a small monthly fee.

Sara, how are you doing? How is your diet going?
Posted 6/28/2005 6:01 PM (GMT 0)

Susan,

I am going in for surgery on July 7th. Thanks for all of your insight. I know I am doing the right thing and I can't wait to feel better. Reading all of the messages from everyone here has really helped me not feel so alone.

Melissa

Posted 6/28/2005 6:13 PM (GMT 0)
Hi. I just got back from my surgeon and I am so discouraged. She was a little defensive at first and really got me going. I am not sure how I feel about her. My sitz marker test was only for 4 days because it happened to fall on a holiday week and so she wants me to repeat the test. I wont be able to do it now until the week of the 17th. She said as long as the markers were still there we would go ahead. She believes I am a good candidate, but I sensed she doesnt agree with the surgery. She gave me all the possible complications and told me I could still have pain after the surgery and other problems. She seemed negative. I said I would do the marker test again, but truthfully I feel like giving up. She told me to take more laxatives if needed. Also she kept saying stuff like "its not cancer" its an elective surgery. Towards the end of the visit she softened, but MAN!!!! She did say she needed to screen patients who really would benefit from the surgery and those who wouldnt, so I guess it was like "good cop, bad cop" At the end she said she would recommend it but I just dont know. HELP!!!! Gingy sad

Posted 6/28/2005 6:13 PM (GMT 0)

Hi Everyone,

Christina~ I read you asked about scaring and weight loss.  I lost weight b/c of the prep, the hospital stay, then once your home it's best to stick to a very low residue diet....very bland.  That will cause some weight lose untill you can eat normally again.  I had an open surgery, but I already had an 8" scar down my stomach from a 3rd kidney I had removed when I was about 9 years old.  The good news is my doctor went over my old scar and made it look much better!  I know how you feel.  I have hated my scar all my life.  I did use an over the counter cream (Mederma) to help with redness and thickening but I don't really think it made much of a difference.  I would like to say there's something out there that make a scar look better but I don't think there is.  Anyone have any suggestions???  I did ask the doctor to PLEASE take his time closing and try to make it look as good as he could.  My old scar was very wide and this does look much better.  

July 5th will be 6 months out and I feel great.  Wish I would have done this surgery years ago.  37 years old now, suffering since I was 13.   I still have very loose stools, some days paste, some days very watery.  I have decided to never have a certain spicy chinese dish again.  I paid for that for 2 days!!!  I do have to say I eat almost everything I want.  Lots of fresh fruit, salads don't bother me and nuts seem to be ok now too.  Eating usually seems to trigger a BM after about 1/2 hour but not always.  Going about 3-4 x's a day and sleeping through the night!

Sara~ I hope you are feeling better.  Did they find out why you were bleeding?  Sorry if you already answered, so many replies on this forum, sometimes I miss things.  I wasn't on any tropical vacation, just visiting my family in Missouri with my daughter ( although the weather was beautiful and they have a pool tongue )  

Susan~  Spicy food is a killer...yikes.  I had to use preperation H with soothing or cooling aloe, it seemed to help.  Have you found anything that works well?

Good health to everyone....hope to hear from Zoe soon!

Sommer

Posted 6/28/2005 6:38 PM (GMT 0)
Hi Everyone and welcome MMA :)
I have to say that each day now is better and better...I ditto what Susan said...recovery can be a bit rough, I also got hemmorhoids, which I just found out yesterday. I saw my surgeon and I didn't have a fissure, just some small Hems--that we causing a bit of bleeding. She said everything else looked great, yeah I am so relieved that it all healed up just fine!! July 7th--that is great you'll be on the road to recovery in no time.


Avery I will totally buy that Miralx from you..I don't have prescription coverage if youi want to seel it to me I'll take it! I am still eating low-res diet at 5 weeks out and and am anxious to start back on strawberries, my husband drinks smoothies everyday and I am getting envious :) The first week out I ate a salad and a littel steamed spinach and chickpeas becasue my hemetology doctor told me to and it actually went fine once. The next night I ate the same thing and was in such severe pain the next two days that I am now afraid to eat anything but soft foods. I remember writing here that I was so happy to eat a salad so soon after, but that slas and spinach turned out to be a mistake!!! Just a warning for those who have upcoming surgeries :) Soft foods will give you less stomach aches as your small bowel is learing it's new job.
Thanks for the advice on the food dilemma, it definitely helps to have a sense of when and how to incorporate fibrous foods back into othe diet.

Susan you sound as if you are 100% back to your old self--except not bloated anymore--I am so happy that you feel fabulous. I am still eating small meals, if I eat a regular size meal I tend to get pretty bloated so I eat little bits throughout the day and then i don't get bloated at all --I LOVE it!!
I am sorry to hear about the man who died while he was running, that is awful and with two kids, so sad. That's what happened to my husband's dad--he went for a run one morning sat down b/c his chest hurt and died right there from a heart attack.
I am glad you are enjoying Europe--your trips sound fantastic......
What is your diet like these days?


chistina--It's so good to hear that your insurance company is stepping up and paying for the surgery--I just got my bill last week and it's incredibly scary-yikes.
Gingy--what Susan said about the pain meds is so important--Morphine seemed to make a few us on this boad sick--I opted for delaudid (sp), but sometimes and epidural is available for the first 3-4 days. Also how will the meds be administered? Will you be pushing the meds yourself or will they be automatically delivered through your IV? I administered myself so If I fell asleep for a few hours I would wake up in pretty bad pain, so it might be good to have a constant drip. I can't remember if you said you are having an NG tube or not, but if you don't know it's good to ask. The ONLY thing good about an NG tube is that it completely alleviates nausea, other than that the tube can be pretty uncomfortable especially in the throat.
Posted 6/28/2005 6:49 PM (GMT 0)
I was reading the comments about insurance. Do most insurance companies not pay for the surgery?
Posted 6/28/2005 6:56 PM (GMT 0)

I'm not sure about most insurance companies but I have never had a problem with my insurance company paying for any of my surgeries (I have had a few) not only for this problem. I did have part of my colon removed last year and my insurance company paid for the whole thing with no problem.

Melissa

Posted 6/29/2005 7:42 PM (GMT 0)

Cheryl, I was afraid that they would not cover it because it is not a life threatening condition. But they are because of the pain that it causes.

Gingy, keep your head up. Things will eventually get better. I know what you mean about the surgeon though. My doctor at UCLA spent a lot of time trying to talk me out of the surgery. Just make sure to tell them how you are feeling.

What is the NG tube that y'all are talking about? I haven't heard of this. Also, will the pain be sharp or are we talking about a dull ache? I just want to be prepared for what is coming. Thanks for the feedback ladies!

Christina.

Posted 6/29/2005 8:05 PM (GMT 0)

Hi All,

Just a quick note to Christina about the NG tube and the pain.  It's a long tube that will be in your nose and down your throat for about the first day or 2 after surgery.  It's kind of uncomfortable, but at the same time, you're so out of it, it's not a constant annoyance.  Not fun though.  It helps your bowels rest and I think it helps your stomach too since you're not eating, etc. 

As for the pain, it's definitely there, but it wasn't as bad as I imagined.  The morphine drip is good, you should have a button to push to self-medicate (to a point of course).  The third day post-op, I was horribly nauseous and eventually vomited which wasn't so fun.  I refused the morphine after that and asked for Tylenol...which got me through the rest of the stay just fine.  I never had an rx for pain meds when they discharged me--just stuck with Tylenol and heat packs.  I don't think my pain tolerance is that high--you're definitely uncomfortable, but to me it wasn't excruciating.  The other kind of pain was bad shoulder pain from the gas they put in you during the laparoscopy.  The gas sort of migrates to your upper body and feels achy and can be painful.  They gave me those disposable mini-heat packs for each shoulder every couple of hours.  I'd had one laparoscopy before this surgery, but have not given birth or had a c-section, so not sure how it would relate to that kind of pain.  An open incision may hurt more, too....the others probably have better advice on that.

Sara, I will be happy to send the Miralax to you--maybe we can e-mail separately with contact info, etc?  I have no idea how much it is without insurance, but imagine it's high :(  Glad you can use it.

Avery

Posted 6/29/2005 8:46 PM (GMT 0)
Hey Everyone,

I had my pre-op phone call from the hospital today, they said everythings fine for my surgery next week. I called my surgeons office also to see if they had a set time yet for my surgery on the 7th and they said they will let me know either the day before or the day of the surgery. Did you guys have to wait that long before they let you know the time of your surgery? I am trying to work everything around it and I have no idea what time that day its going to be. I have to get my kids situated ahead of time and my parents are not sure how much time to take off from work that day because they don't know when it is. It is totally irratating!!

MMA
Posted 6/30/2005 12:47 AM (GMT 0)

hey. Question; when I spoke with my surgeon yesterday she said that the incision will be from my pub to belly button, with a possibility of going higher. Dependent on the location of the bowel. I DO NOT want it above the belly button. What has everyones experience been?

After speaking with the surgeon I am almost talked out of doing it. I was so excited to get relief especially after reading about experiences, but from the surgeons view I wonder if it is extreme. I am going to schedule it for September to give time to think about it. Input is great. Thanks.

Posted 6/30/2005 4:57 AM (GMT 0)

tongue   Hi All!  This is my first time posting to this forum, but I have read every posting since the first one.  Intially I posted on my own, but after reading this group, this is something I would like to be a part of, if y'all will have me.

I have been constipated my whole entire life.  Always distended, always constipated...every doctor I have ever been to has told me it was no big deal.  I have been on every stool medicine that you can imagine.  Had the sitz marker test and failed that.  Finally had a colonoscopy after putting it off for a while... didnt go so well.  Has anyone NOT had results from the Go-Lytely, because that is what happened to me.

Anyways, after the colonoscopy, my GI doctor said that I needed to have a colectomy and he would refer me to a doctor.  That was in May... and I finally have a new doctor's appointment next week.  I have to have the manometry test and the defectpgraphy test prior to surgery.  After reading this board, I am scared that this doctor wont want to do the surgery right away. 

See, here is the problem.  I am a nurse... but more importantly I am a nurse educator as well as a nurse practitioner student.  I CANNOT take time off of school (and I am done in 2 years) and I cannot take time off of teaching (because then I wont have a job nor will I have insurance) so I REALLY just wanna get this done... but I dont want to sound anxious to the doctor... because then he might balk at the surgery.

The whole thing scares me to death.  I have nasty anesthesia reactions, and I am allergic to morphine, demerol, vicodin, percocet and codeine... so the pain thing is a scary thing too.

It seems like my colonic inertia is different then most people.  NOTHING works... I have a very small BM every seven days... and thats it.  I never have a large BM... maybe like once every 3 months... but I do have those small BMS.  Also even though I am distended, I have been like this since birth... so I dont know any other way to feel if that makes sense.

Somer - I think you said that you were a nurse... what kind of nursing were you involved in? 

Sara - I dont know you, but it sounds like you have had a rough road... your attitude is wonderful!  I am sure it has helped you through!

Sommer - you give me hope as to what life could be after the surgery!

Zoe - I hope things went well for you!

Thats all folks... I ramble in the middle of the night :)

Hugs,

Emma

Posted 6/30/2005 12:49 PM (GMT 0)
When some of you guys say that your surgeons are saying how drastic this is, what exactly are they telling you?  The surgeon I spoke to basically told me this was my only choice.  My gi is the one who says I need a 2nd opinion, which his big thing is what if this does not solve my problem and my age.  I can not wait to go to Pittsburgh on the 21st to get the 2nd opinion and start the ball rolling one way or another.

Posted 6/30/2005 1:45 PM (GMT 0)
Cheryl,

My surgeon told me the same thing. I asked what would happen if I didn't go through with the surgery right now and he said I could wait it all depended on how much longer I could take being sick. He said he could increase my medicine but eventually I would have to have it whether I wanted it or not. I am sick of being sick so I am going through with it now. I thought about getting a second opinion but I decide I didn't want one because I don't want to wait any longer to feel better so I'm just going with it.

Some of you have said something about a tube down your throat after the surgery. My surgeon never mentioned anything about that. Do they always use that after a total colectomy?

MMA
Posted 6/30/2005 1:51 PM (GMT 0)
My gi doc tells me that this may not work but on the other hand told me that down the road my colon may just stop working all together I believe he referenced it as it would be like a wet rag, no good, and that my problem is not going to get better on its own.  But he is adament on me getting another opinion and I figure I have suffered this long a little while longer can't hurt.

Posted 6/30/2005 2:04 PM (GMT 0)
When I had the left side of my colon removed last year, my surgeon said the whole left side was twisted and floppy, completely dead tissue. He said because the left side had been shut down for so long that the rest of it had also. He thought by taking the left side out the rest of it would start working again and it is not. If I don't have the rest of it taken out it will end up just like the left side was. That is probably what your doctor is talking about it being a wet rag.
Posted 7/1/2005 4:26 AM (GMT 0)
So what is the consensus on the scar? Above the belly button or below?

My experience with my surgeon was that she definitley felt that the surgery was the answer for some people, but was drastic considering it wasnt life threatening. Maybe I just didnt convey to her enough how much pain I was in.

 

Emmaleigh; Your history seems very similar to mine. I too have BM's every 7 to 10 days ,  but usually rabbit pellets. The first time I went through the prep for a colonoscopy when I was 20 the colytle didnt work for me either. I had to then have to large enemas administered to be cleaned out.

I understand your issue with scheduling. Lets face it, surgery  is inconvenient. I had my scope in the beginning of April and my GI doc talked about surgery then. I was hoping to do it before my son went back to school, but with all the tests and 2nd opines they put you through im now looking at late August begin Sept. Good luck with your doctor.

 

My doctor scared me saying that the surgery could cause a lifetime of diarea. That I dont want. Does anyone know the stats on that?

 

How is Zoe?

 

Posted 7/1/2005 4:31 AM (GMT 0)
MMA; You mentioned you were having the surgery lap. Where are you having the surgery? I would like to have it lap as well, but I dont believe there are any surgeons that do it in Las vegas. Im considering going to Mayo Clinic in AZ, but it would mean my insurance would only cover 80%. I really dont want that scar!!
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