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Total Colectomy... Part 12

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Posted 10/5/2006 6:36 PM (GMT 0)
Gogently, I understand completely what you are going through.  I have really found this forum to be very helpful.  My surgery is less than 3 weeks away and I am getting very anxious.  My migraines have become almost unbearable and add that to the constipation and nausea, I am so ready for a change.  I will let you guys know how my surgery comes out.  I am really scared, I haven't been in the hospital since I was in kindergarten which was about 24 years ago.  Thanks for all your support. 

Posted 10/5/2006 7:10 PM (GMT 0)
Thanks teddyb. I know I really need a support group around me right now. about the only one who understands is my husband and fortunately he is very long on patience. You will be in my thoughts and prayers too as we prepare for this journey to get our health back.
gogently
Posted 10/6/2006 12:36 AM (GMT 0)

Hi!

I'm glad you are finally getting some answers.  I have had very similar experiences with some of your symptoms and just wish I had known what I do now.  I can especially relate to the migraines and the weeks on end of not going-anyway, I am to hear tomorrow when my surgery date is.  I go for 3 weeks of biofeedback (even though my dr doesn't think it will help?).  I am more than ready to move forward and hopefully my recovery will go smoothly.  I have heard many stories of people having this surgery and having a hard time gaining any weight or keeping weight on-have others heard this or experienced this too?  I am curious about this since I am already quite underweight and can't afford any more loss.  I am also a little concerned with the pain but more so anxious about having to stay in the hospital for any length of time.  I have tried to get as much info about the surgery as possible so that I know what to expect - hopefully that will help.  Well, I've rambled enough.  Take care and hope the rest of your tests go well.

Tricia :-)

Posted 10/6/2006 6:53 PM (GMT 0)

Tricia, When is your surgery scheduled for? I read that they had cancelled your pre-op so I know it is soon. I will be praying for you too. I don't know about the weight issues but maybe someone else will. I know that this illness plays havoc with your metabolism and hopefully after the surgery it will stabilize for us. For me it has been weight gain. Almost 15 pounds in the last couple of months!

vandgsmom, How are you doing? I hope much better after your long stay. What type of secondary infection did you get because I'm looking at having a central line also. My last surgery my hands were almost as sore as my surgery incision :) because of having to move the IV around so much. How are you doing with your diet? Did you find anything that works? I read on another post that canned pears or yams sometimes helped.

resa and all, when is your surgery scheduled? Have you had the manometry tests done yet? Is this something that everyone should have done prior to colectomy? I know that the doc did a manual but I'm not able to stop my urine midstream and that is a sign of a weak pelvic floor. Also has anyone else found that with their constipation bouts they have bloody (gross) bladder infections? My GP thinks there maybe some relation because even when I don't have a bladder infection I always seem to have alot of blood (micro) in my urine. It was cultured as resistant e-coli and I'm currently doing a 10 day round of cipro. Last year I had to go through 3 rounds of different antibiotics before it cleared. The antibiotics also make my constipation worse.

gogently

Posted 10/7/2006 5:28 PM (GMT 0)
Hi Everyone,
Let me try this again. I just got kicked out – actually four times.
This may sound strange but here goes. For approximately the last month my bowel has acted up. This has not happened before. I have had three bouts of sudden onset of diarrhea/watery stools at five-day excrements. I do not go unless I take something. I have not taken anything to aid my BM's this past month. Nothing works anyway. It has been seven days since the last episode so I guess I am back to normal. Tonight will be an enema night. I get severe bowel pain every so often, but have had several episodes this past month. One lasted for four straight days. Since October 5, I have had them off and on. These episodes are not as severe as they can be. These bowel pains are in addition to the everyday bloating, nauseous feeling, and being uncomfortable. My energy level is at zero. I just did some light housecleaning and my energy is zapped. At this moment I am so bloated and drained of energy. Do any of you have any thoughts on the sudden onset of diarrhea? I do not know where it came from – just from out of the blue.

Gogently – I am scheduled for my manometry for 10/13/06. I do not know if this diagnostic test is mandatory, but it was recommended by both surgeons I saw. The surgeon who is doing the surgery scheduled me for this test. He did the manual, which he said felt fine just a little weakness but wanted this done in addition. The tests I have had are the sitz marker, small bowel transit – took 20 minutes for the barium to go from mouth to stomach to cecum – I guess that is good, and heart stress test. The surgeon said I may need a temporary bag – he could not guarantee that I would not. The surgeon might also do an ultrasound before surgery.
Posted 10/7/2006 11:18 PM (GMT 0)

Hi! eyes h

Thanks for your replies.  My preop physical has not been scheduled yet-I am waiting until Moday to be given the surgery date.  It is so frustrating for me to wait for everything.  It seems they keep wanting more tests and the same results.  My dr said it would be malpractice on his part not to run these tests as this is a major surgery so I guess I need to be patient.  I find this hard when I am so bloated and nauseated and blah!!!  Oh well, I am hoping this will be over soon.

I was interested to see your comment on the metabolism as I couldn't figure out why it seemed  I was gaining weight when I wasn't eating hardly anything and such.  They told me it had to do with the fluid fluctuations???  I am hoping this all changes soon.

you talked of a central line is that for tpn or just fluid iv's?  I'm curious as I have heard several people needing to be on tpn's and others just standard iv fluid.  i am hoping i do not need the tpn and will be able to eat (liquids) fairly soon after surgery.  I still feel like I am under informed regarding this surgery and what to expect.  My mom is having open heart surgery soon and she will go for a 4 hour class the day before her surgery to cover all the details.  I wish they'd do that with me.  My surgeon did go over the basics and I have read some online but still feel like I am out of sorts espescilly with what to expect afterwards.

I need to run-literally-bathroom

Tricia

Posted 10/9/2006 11:23 AM (GMT 0)

Hi all, Trica i feel the same as you, i don't feel as though i know enough about during and what to expect after the op. At least we can keep reading in here and get some feedback.

        Holly

Posted 10/9/2006 1:23 PM (GMT 0)

Holly-

Thanks for your reply!  I know I have been fighting this for years and thought it was "just" my diet and could not seem to find a dr who even cared.  But then, after ending up in the ER 3 times within 2 weeks did I finally get some answers.  I just wish I would have known about all of this earlier as I feel like I have lost soooo much time, etc., with all of this.  Anyway, now I am trying to prevent another blockage before they do surgery but all of the preventative messures (laxatives and such) are taking their toll on my body.  Have you run into that scenario?  It seems I have to continually use more and more and they are becoming less and less effective.  I was thankful that we ran out of work last night so they sent us all home as I felt horrible.  I work in a clean room setting so running back and forth to the bathroom is not convenient.  I hope after the surgery that things will be better.  I have been told that initially I will be going more often but hopefully I will not be backed up and in so much pain???  What are your symptoms?  Do you have the horrible bloating (and I don't mean minimal) that makes you look like you are 9 months pregnant?  I sure have and it is so frustrating because then you feel so nauseated and such.  I'm sorry I am complaining so this morning but guess I had a miserable night and am so worn out with all of this.  I am waiting to find out my surgery date today and if my clinic says to wait until after my other tests again I will scream because they all say the same thing that surgery is necessary!  I want it done before the holidays so that maybe I will feel good by then???  Well, I need to get kids ready for school and studies ready for the others.  Take care and hope you are having a better day than me!  I promise to be happier with my next post!

Tricia

Posted 10/10/2006 11:27 AM (GMT 0)
Trica, i have alot of the same symptoms as you, bloating, nauseated, pain, tired all the time it's not a nice feeling at all, i work in the food industry and it doesn't work in well with that either ( i am just very lucky i work with such great ppl) they cover for me all the time, i will have to make it up to them after the op. My op is Nov 28th so i can't wait in 1 way but i can in other ways, some relief, i think you get to that point and you say ok anything is better then this feeling. I take 4 different laxatives at the moment and have been for months and still am lucky to go once a week, so i know the 9months pregnant feeling. And as far as finding out my problem it took a few years, one doc used to say if you only go once a week , you only go once a week, thats your body. Now i think look what i have to get done just to go.. but at least i have light at the end of the tunnel.... talk soon...........



Holly
Posted 10/10/2006 5:37 PM (GMT 0)

Holly-I know what you mean!  I finally got my date-the 14th of Nov. and in some ways it can't come fast enough but in others I am worried too.  I wish it were a few weeks before Thanksgiving so that I'd be a little more recovered but just hope I have no complications and can go home within the week.  My dr says it is more like 7-10/14 days depending on circumstances and complications.  Have you been told what to expect afterwards?  I have been told little and that my diet will be liquid for a short time, to soft foods, to regular foods.  However, I have also been told that there are many foods that I will not be able to eat and that because everything will tend to run through me at least initially I will need to be on many small feedings and supplements to get extra nutrients and calories???  Have you also been told this?  I hope to get informed more closer to the date.  Well, I need to try and get some zzz's while my little ones nap as I work again overnight.  Talk soon.

Tricia

Posted 10/10/2006 10:35 PM (GMT 0)

Hi everyone,

I too have the pain, bloating, nausea, and can't go unless it is forced. When my movements are not liquid (after alot of dulcolax) they are pencil thin with alot of mucous and sometimes blood. I did a trip to the emergency room 4 months ago and was sent home with the diagnosis-severe constipation. Since that time I've done the transit studies, and a defecography. Do any of you have problems passing gas also? I also get so nauseated from the weight of the barium being in my gut. My x-ray count this year is up to 14 and tomorrow I have to go to the dentist! Soon I'll be glowing in the dark :)

I had a colonoscopy in March and thought I would die. They were sending everyone else home from recovery but not me. I was in so much pain because I couldn't pass the gas that they had put in me. The doc finally gave up and gave me a shot of morphine and sent me home. As soon as the morphine wore off I was back in his office and they did an x-ray and found a huge air pocket at my spleenic juncture of my colon. They sent me home with an RX for more morphine and the doc told me that it was because I wasn't walking enough! I was writhing in pain all over the hospital bed doubled over! Wasn't that enough activity? Go figure! It took over a week for the pain to subside! 

My colorectal doc says that there are not many of us out there with colonic inertia. He says they don't know what causes it...possibly a brain/gut short circuit. I've been told the same about the diet as you Tricia, that it will be a progression of liquid, to soft, to trial and error regular foods. It seems it will all depend on what your body will tolerate and as time goes by it gets better.

I read that we will need to take a liquid vitamin and mineral supplement to replace what our colon can't provide. You also need to know about medicines and not to take tablets or time-released medications because there isn't enough time for them to break down. So it means only liquid or capsules which break down in the stomach and have enough time to be absorbed by the small intestine.

Take care gogently

Posted 10/10/2006 10:57 PM (GMT 0)

TeddyB,

When is your surgery date? I know your post op is this Friday. How are you doing? Are you still so ill or have they given you something to help ease the migraines and other symptoms? We'll all be thinking about you as you're the first of the newbies to get a new life in November. I know that November will  be a special month for all of us and it will truly be a month of Thanksgiving...thanks God for giving me my life back :)

gogently

Posted 10/11/2006 1:21 PM (GMT 0)
Hi all/Trica,

        i am so glad you have a date, mine is 29th Nov so you still might be in hospital as i go in, and i get back from my holidays on the 9th Nov, so only a quick chat before you go in but i am so glad you now have a date, i get some tips of you i hope haha. So by Christmas we will be new girls wohoo.

            Holly

Posted 10/11/2006 1:57 PM (GMT 0)
Thanks for asking...I am getting pretty nervous about the whole situation.  Friday is the pre-op day and I have been notified that my insurance has only approved 4 days in the hospital but my doctor will file an appeal for at least another day.  I can't believe it is less than two weeks away. My actual surgery date is October 24.  I will update you guys on my progress and let you know how the surgery goes.  Be praying because I am a nervous wreck :) 
Posted 10/13/2006 1:05 PM (GMT 0)

Hi!

:-)  'm glad everyone seems to be heading in the right direction.  I had a biofeedback appt yesterday and it was interesting.  The nurse did say that it would not take care of my problem but they are trying to strengthen some muscles-ha!  Anyway, I am extremely anxious about this surgery and want it done NOW!  I am soooo tired of all the discomfort and such and ready to start a new life.  Has anyone else had the feeling of retaining tons of fluid and feeling sooo puffy that their skin feels like it is stretching.  My primary dr asked whether I had had a sodium level checked?  eyes Not sure why unless it is all the laxatives and such.  I know I had trouble with my heart and potassium rate the last stint I had with the enemas so maybe that is the problem.  I hate the feeling-once I do go, though, this feeling does go away so maybe it is just the pressure inside me???  My mom keeps telling me of friends of friends who had similar surgery and then had to go back in due to complications and now have a bag.  I told her with how I have been it is worth the risk and that life couldn't be much worse than what it has been this last year smurf  .  Well, I need to try and get some redface zzz's as I just got off work-no OT available this weekend so maybe I can catchup on some sleep and housework.  Take care and keep us all posted on the surgeries and what to expect.  (Oh, 4 days seems like sooo little as I have been told anywhere from 7-14 days with 7-10 being the norm). yeah

Posted 10/14/2006 2:50 AM (GMT 0)
Hi Everyone,

I went for my manometry this afternoon. Muscle tone seems to be good but the nurse, who only saw me today, seems to think six biofeedback classes are going to make everything work. She thinks Miralax along with fiber is going to make the bowel move. As if I haven't tried that already. I gave them a two page list of all the over-the counter meds I have tried over the last 20 years, plus all the prescribed meds. I wanted to cry. I am so fraustrated. I thought there was a light at the end of this tunnel. I got home to late to call the surgeon to schedule with him. If he agrees with her, fine, I will do the biofeedback, but I want to be scheduled for the surgery. I just want to feel better. The doctor who only saw me approximately 2 minutes is going to write up her report and send it to the surgeon. Right now I feel so down and depressed. I'll check back in after I see the surgeon. I hope everyone else is doing fine.
Posted 10/15/2006 4:02 AM (GMT 0)
Resa-I'm sorry you got such discouraging news. If your muscle tone is good than why the biofeedback? I guess I don't see where that will help. I know I have to wait until my 3 sessions of biofeedback are done because they are trying to improve my one muscle function so that I don't leak too much before they will do surgery but even the nurse doing the biofeedback has said that this won't take care of my problem and that enough is enough. I would be crying too because I am so tired of all of this and of all of the otc meds I need to take to 'try" and get things moving through me-most don't work anymore. I would definitely put a call into your surgeon and let him know how you feel in detail and then call your primary. Let us know what you find out.

Hope all the rest are well. I had a horrible night with migraines-again-and am so frustrated with them. I was finally able to use the bathroom this am and felt a little better so think it is all related-kind of like pressure in a bottle. I was so crabby and such today and have had it with the wait! I don't think Nov 14th can come fast enough and no one better cancel that date on me at this point. Is is possible to become toxic with all of these laxatives? I really think I get a buildup inside of me. There are days when I can't get enough to drink and feel like that's all I do but then I just balloon out and that makes matters worse-a no win situation. I can hardly eat anything but really am not losing much more weight (but I am already quite under weight) so don't know what's with that but maybe my body is just hanging onto all the fluids? Well, I am going to try and sleep but I have another headache starting and just am not optimistic. Has anyone found any foods that help? I have tried eliminating all sorts of things to no avail. Nothing seems to appeal to me anymore and I get so bloated that I just feel miserable. Well, enough complaints...hope you all have a good weekend.
Tricia
Posted 10/16/2006 1:29 AM (GMT 0)

I was reading on this board a couple of months ago that some of the ladies who had undergone surgery were using a product called Scarguard to help with the appearance of scars.  I looked on the internet for the product and see two - Scarguard Scarcare & Scarguard Lightener.  Which one(s) did you use?

Thanks for any info you can provide. :-)

Posted 10/16/2006 10:22 PM (GMT 0)

Hi!

Sorry I don't have any info on the scarguard-I wish I had when I had my c-section but just have the bubbled scar.  Hope you find some info.

I had to call my surgeon's office (again) as I got my paperwork for surgery and it is at another hospital and my dr does not round there.  Anyway the scheduler called back and was very rude...and said I could delay the surgery until Dec which is not an option so I will go to this other hospital and just take a house dr for the daily rounds.  I am not real happy about that but am not waiting longer as I already have 4 wks to wait and the bloating and such are getting worse and laxatives are NOT doing a thing.  I am constantly thirsty-has this happened with anyone else?  I'm thinking it must have something to do with the enemas and MoM?  Well, thanks for any info.  Hope all are well.

Tricia

Posted 10/17/2006 3:33 PM (GMT 0)
Well it is exactly 1 week away!!! I have registered at the hospital and received all my information. I am getting more anxious by the hour. I have to start a strict diet Friday. Does anyone know what type of diet to expect after the surgery? Please be praying for me!
Posted 10/17/2006 4:04 PM (GMT 0)

teddyb-I'll keep you in my thoughts and prayers.  What are they all doing?  I'm assuming you're having the same surgery I am-total colectomy?  I have only been told clear liquids after graduating slowly to soft liquids, to soft solids, to solids but am not sure what that all entails.  They did not give me any time frame and really feel uneducated about this whole surgery and would like to know more.  I am hoping someone who has been through this will give me some insight.  I don't know if they will be using a ng tube and feedings as my daughter had that with some major surgery, though, not this particular one.  I am hoping to gather more info.  My surgeon's office is not helpful at all so am pretty much on my own gathering whatever I can.  Good luck to you and keep us posted with any info.

Tricia

Posted 10/18/2006 12:30 AM (GMT 0)
Hi Everyone,
On my written Sitz Marker report I noticed a word that I wanted to look up. While doing so I found this website that is very informative. I want to educate myself on this surgical procedure and on colonic inertia. The site is called ICAN FOUNDATION (International Constipation and Nausea Foundation). The address I use to enter the site is www.constipated.com/Chapters/9_const_pcol.html. I have been searching the web for information for almost one year and this is the best site I have found. If any of you go into this site let me know what you think. If you have other sites for information let me know that also.

I have been trying for two days to schedule my appointment with my surgeon. The receptionist won't make it stating the doctor's nurse has to call with it. Eventually, she might call with a day and time. When I see the surgeon I am taking what I have printed off with me to show him.

Hope everyone is doing well.
Posted 10/20/2006 1:12 AM (GMT 0)

Hi Everyone,

Well, I have some positive news..4 months after surgery I have gone from 15-20 BM's/day down to 9-12...very happy abo9ut this..The surgeon said it will get better over time.

I had my procedure at the Cleveland Clinic - laparascopic...if yhou are interested in how the procedure is done go to this web site..   http://www.webmd.com/content/article/45/1811_50466.htm

This article has illustrations and explanations.

Take care    Phyllis

Posted 10/23/2006 11:29 PM (GMT 0)
Tomorrow is the big day. I am having a very hard time keeping the Nulytley in my system and my bowels have not moved. Does anyone have any suggestions for keeping this stuff down for it to clean out my colon. I would hate to go in and them not be able to operate because my colon has not been cleansed. Anyone???
Posted 10/23/2006 11:55 PM (GMT 0)

Hi TeddyB

Have you tried making the drink very cold...

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