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Total Colectomy Part 13

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Posted 1/27/2007 6:40 PM (GMT 0)
Resa,
I'm sorry I forgot to ask how you were feeling. When is your surgery? I'll keep you in my prayers...I know it will be better for you.

Phyllis,
How are you doing? I hope your recovery has continued to get better. I appreciate you checking in on me a couple weeks ago, I'm sorry I was out of the loop for a little while and didn't get back to you. Anyway I'd love to hear how things are going for you.

Kelie
Posted 1/28/2007 12:40 AM (GMT 0)

Hi KLH,

I have to tell you that I had surgery in June.  I am happier and much more energetic than I have been in years...No more abdominal pain and my belly is now soft to the touch instead of a hard rock.  I am no longer taking the junky medicines like zelnorm, milk of mag, miralax to name a few and my pharmacy bill has gone from 100 to 20 dollars a month....

I do have BM's about 8-10X/day but so far I can live with that.  The imodium did not agree with me and bran makes me too bloated so I am content with the way it is now, initially I was going 20X so there is improvement and perhaps it will still improve.

I eat anything I want except salads, however I do not digest everything I eat. 

I certainly would rather go more often than what I had before with meds not working and taking multiple enemas multiple times a day to get some relief from the pain.. I just didn't want to do anything back then.

Today, when my husband and I go to eat, I linger for awhile over coffee as I know that I will have to go within a half hour of eating...you get over the outside of your home bathroom soon....

I am just so glad I went through the surgery.  It was a very difficult decision to have such radical surgery but I had the constipation problem all of my life and it was just only getting worse and becoming disabling.

I just wish you were not back to step one again.  It is so hard to make the decision and then not have it work out and have to face another surgery.  Also it is a crap shoot (sorry for the pun) because no one can predict before hand how often you will go to the bathroom afterwards.  I have read post from others in earlier parts who had the surgery and went only 2x/day and others who could not leave their homes because they were constantly going.

All I know is that I could not go on the way I was and am glad I had it done.

Take care and keep having faith that all will work out in the end.

Phyllis

Posted 1/28/2007 2:14 AM (GMT 0)
Phyllis,

I couldn't have responded to KLH any better!  You pretty much summed it up in a nutshell.  Even though I have just had my surgery and I am still getting to know my body again, I wouldn't trade any of it. I do welcome the comfort of knowing when to expect a "bm", and I assume that will come as I introduce more food into my diet and my body continues to heal.  Did you happen to have any trouble with your body temperature following surgery?  I am having a difficult time staying warm and am driving everyone else in my house nuts.

I find everyday to be a new adventure as I learn what foods I can tolerate, how often I need to eat and the importance of never overeating.  I welcome any advice from those of you who have been doing this for some time.  Thanks again for your input.

Tracy

Posted 1/28/2007 3:05 AM (GMT 0)
Hi Everyone,
KLH - I am doing fine except for this pain in my gut that won't stop. It is day four this round. I am hoping with the surgery I will never feel it again. I called the surgeon's office hoping he would prescribed something for me but he still hasn't returned from Africa. It would do no good to call my PC, so I suffer and wait. I am looking forward to my stomach being mushy instead of hard like a basketball. Phyllis gives me hope for that. Last time I spoke to the Surgical Scheduler she said I probably would not be scheduled until mid-February or March that there were a number of people ahead of me.

Tracy - I have problems now with my body temperature being too low. I can take a very hot shower and still be freezing. I keep the heater on 70-72, wear a sweater, and cover up with a blanket. If I keep the heat any higher my son has a fit. I am hoping this will reverse after surgery.

Everyone take care.
Posted 1/28/2007 4:21 AM (GMT 0)

Hi Resa

When you have these terrible bouts of pain, have you tried just having broth and no solid foods..are you taking bran and if so I would stop that because it just binds you more and can cause terrible bloat (preop)..Also, warm baths may help the muscles relax...I would consider asking the surgeon, when he returns to put you on his urgent surgical list and give you priority...

Good luck


Post Edited (Phyllis B) : 1/28/2007 4:52:08 PM (GMT-7)

Posted 1/29/2007 5:44 AM (GMT 0)
KLH- I too am having problems with bacterial overgrowth. I just finished my ten days on the awful Xifaxin today. My insurance wouldn't cover the whole prescription, $300 to feel worse everyday! Plus, I swear those pills are giving me nightmares! What did your doctor have you do for it?
Posted 1/30/2007 2:02 PM (GMT 0)
Hi
Phyllis - I do not take added Bran or Fiber. I place cold packs on my abdomen. This time it lasted four days. If I do not hear from the surgical scheduler by mid-February I will probably call her again. I always have bloating. This pain feels like something is twisting/squishing my insides.
Posted 1/30/2007 8:26 PM (GMT 0)
Hi Everyone! I have a few questions and was hoping for some input.   I went to see my family physician yesterday for a follow up visit (my surgeon's wife had emergency surgery).  My incision is healing nicely, though we are still having a little difficulty with the openings from the J tubes.  I expressed to my physician the need to return to work and he laughed at me.  How long is it before one should be allowed to return to work?  I would like to go back to work part-time for at least 2 weeks before returning to full-time.  I realize that though I do feel much better that I may not be ready to return to a 40-50hr week. I do not want to do anything to harm myself, and was wondering how everyone else handled these issues.

Tracy

Posted 1/31/2007 1:31 AM (GMT 0)

Hi Resa

How about trying a warm heating pad instead of ice pack and eating a low residue diet and make sure you have enough fluids.

Posted 1/31/2007 1:06 PM (GMT 0)
Hi Phyllis
I could try the heating pad next time this pain hits. It is intermittent and I cannot tell when the next time will be. In the past a couple of doctors gave me pills for spasms but they didn't help. I have also tryed Gas-X, and other over the counter meds for gas, but they didn't help. I found it is just a waiting game. Some times it hits hard and others it is just bothersome. Between the last bout of pain and this one it was approximately 6 weeks. So maybe (fingers crossed) it won't occur again before surgery. Thank you for all of your suggestions.

My niece is getting married in May. It is being held approximately a 2 hour drive from my home. If I don't get scheduled for surgery until mid-March do any of you who have had the surgery think I can make the drive. I really do not want to miss this. My other concern is toilets, where located and how many. It is being held at a winery.
Posted 1/31/2007 4:33 PM (GMT 0)
Resa,

I think it all depends on how fast you heal/recover from the surgery.  In some instances the surgeon may keep you in the hopsital up to 14 days and in others, such as mine, I came home on day 5 and am doing quite well.  I actually plan to fly to Virginia at the end of February.  As far as bathrooms, again, I only go 3-5 times a day, where others have posted up to 10 and 14 times a day.  I know I have not answered your questions, but it really depends on you and your surgeon as to what you feel you can tolerate 6 weeks out. I think that you are going to feel much better than you anticipate, and I hope that you are able to attend the wedding.

Tracy

Posted 2/5/2007 2:49 AM (GMT 0)
Hi everyone, It hs taken me a while to report! That was a hard surgery! I ended up in the hosp. 11 days and stayed with my parents 2 weeks and have just come home with my husband! In the surgery my blood pressure and calcium dropped significantly! I am Okay and really not going to the bathroom very much! The Dr. said it was because if pain med. How long was everyone taking pain medicine? It is late and I will read what you all are saying so I can respond better! My doctor said my colon looked so messed up with kinks all in there and laing in there very different with lots of scar tissue! So glad I got rid of that messed up colon! I the hospital I was in so much pain and discomfort but everyone could not of been nicer! My doc has me on Milk if Magnesia! I think that is weird because I thought I would go some much more! Thank you all for your thoughts and prayers and look forward to keeping up with everyone! I am eating chicken, cream of rice with bananas, soups, popsicles, applesauce, hamburger patties,choclate ice creams! I had a friend that felt sorry for me and said "don't worry your colon will grow back~that tickled me! I check in tommorow~sorry this took so long! lam
Posted 2/5/2007 3:23 AM (GMT 0)

Hi lam

So glad to hear that you are home and doing well...Just go easy....

Posted 2/5/2007 7:33 PM (GMT 0)

Iam,

I am soo glad to hear that you are doing well. Take it slow and you will do just fine.

Tracy

Posted 2/7/2007 3:03 PM (GMT 0)
KLH: I was told that my disease was in "patches" all along the colon and like others, was told that the disease can show up again anywhere it wants when it wants. It's a hard decision as to whether or not to go back and have the rest taken out - this disease is so unpredictable - but it seems (to me at least) that you'd have a much better shot at remission if the whole thing was gone.

It's so depressing to read about people's problems with their insurance carriers and scheduling doctor's appts and surgeries - I've always had a low opinion of HMOs but it seems like more and more plans are incorporating aspects of the HMO bible into their coverage.
Posted 2/8/2007 3:37 PM (GMT 0)

Hi

Are any of you taking vitamin after total colectomy and if so...what are you taking

Thanks

Posted 2/10/2007 7:40 AM (GMT 0)
My surgery is in 4 days! I am having a hard time getting things cleansed. Nothing wants to move. I cannot take golightly or osmoprep because I just throw it all up. Any suggestions? I see why my surgeon wanted me to start the process a week in advance now...

Phyllis B,
I just started taking Centrum liquid multi-vitamin. I was told the liquid vitamin would be best for absorbtion after the surgery so I just started taking liquid form now since my surgery is so close. No point in buying two things of vitamins.
Posted 2/10/2007 11:22 AM (GMT 0)

Thanks for the input....

Sorry to hear you are having a tough time cleaning out....be sure to drink plenty of water so you don't dehydrate.....what about enemas?

Posted 2/10/2007 2:01 PM (GMT 0)
Hi everyone, I also vomitted the golightly up prior to my surgery and was not cleaned out much at all and informed the doctor and he stated just to come in and the surgery will be done of which I did.  I am looking forward to gogentlys returning to see how she did with the surgery. It has been a long time since she responded. Well, I will be in touch. By the way, yesterday for the first time I did not go near as much as usual. I hope everyone has a good day. Enpointe
Posted 2/10/2007 4:04 PM (GMT 0)
Hi Everyone,
Booty - I hope everything goes well for your surgery on 2/14. There is a laxative called Pico Salax. It can be purchased at a pharmacy. It is supposed to be taken the day before the procedure. You could ask your doctor about it. I am planning to ask mine. You can find info on it on the Web.

Enpointe - they did the surgery even though you did not clean out well? Were there any complications from that?

Did anyone need blood? When last I spoke to my surgeon in November he said that I wouldn't need it. When I checked with the surgical scheduler she said he had me down for two units. I told her I can't take someone elses blood that he needed to take mine now. She said she would send a note to him and for me to let them know at pre-op. Isn't pre-op a little too late? I think the day they call to give me my surgical date I will call my surgeon's office to set up an appointment just to take the two units of my blood.
Posted 2/10/2007 10:04 PM (GMT 0)

Hi all!

I'm back...only 6 days in the hospital. I had an epidural and it was so worth it...only had to deal with nausea which could have been partly the ab surgery but I could have danced myself down the hallways right after surgery. I couldn't feel anything from my midback to my mid thighs. My incision starts at 1 inch above my belly buttom and ends at my pubic bone. I had very low potassium levels in the hospital also and they had to give me bags of the stuff. Also low blood pressure. They took the catheter and epidural off at day 5 much to my relief. I hate sleeping on my back let alone tied down with tubing everywhere. Last Monday was my two week mark and I was feeling great...having bowel movements 1/2 to 2 hours after eating and going about 5-7 times per day. I walked around our culdesac on Monday. I wish I could say that things were still going great but like I said before I always seem to be the 'exception and never the rule'.

Wednesday morning I had alot of itching and more pain than normal (I actually had been weaning off the percocet with my doc's approval because I thought it was what was making me itchy). I just thought it was healing pains and when I went to take a shower Wednesday night 4 inches of my incision was bright red and around it inflamed and purple. But I felt okay and my husband said he would take me into the doc's first thing in the morning. I didn't sleep well that night and got up at 6am Thursday morning to use the bathroom and take my pain meds. When my husband and I got up at 8:30am, I asked him to check my incisions to see if the inflammation had calmed down. He pulled back the blankets and there was blood and water all over me. He just about passed out...good thing there was a chair next to the bed. He just sat there with his head in his hands for a few minutes. I was dumbfounded because I hadn't even felt wet until he pulled the blankets back! It reminded me of my water breaking when I had my kids, I was that soaked.

We called my doc and he was out of town so I had to see the on call doc. My sutures had opened up about 1/2 inches and I was oozing like crazy. The doc said I had developed a hematoma from my surgery. It is a blood clot that the body envelopes with fluid to separate it from the organs. Anyway the on call doc opens the wound even further with his gloved fingers (that was two weeks worth of healing!) so it now is 1 1/2 inches wide, sends me home and tells me to just cover it with gauze and let it weep. I asked about antibiotics and he said no. I asked about steri strips to close the wound and he said no. He told me it was possible that the wound would open up even further as my body was trying to get rid of the blood clot (I think docs like this get their kicks seeing the fear in your face!) I was not comfortable with his recommendations or his attitude. Later that afternoon I developed a bladder infection!!! Called back to the on call doc...and was told that I would have to see my GP for the bladder infection. HMO's...don't you just hate them!!!

After messing around on the phone for 3 hours and having the on call doc's receptionist (thank goodness that she went to bat for me) explain to the GP that I could not come in for a urine test because I was suppose to be on my back in bed taking care of a hematoma, I finally got the script for 5 days of Cipro. I am a whole lot frustrated right now. I was not told about the possibility of developing a hematoma from this surgery. The on call doc said it is very common to see hematomas 10-14 days after surgery. Has anyone else out there developed this after their surgery? I don't remember reading any postings on this. Monday I go see my surgeon...he doesn't know it yet. I can't believe I was feeling so good only to feel this rotten. I am having to deal with the pain of open incisions now and anytime I go to the bathroom I have to hold my abdomen to keep from pulling on the incisions and opening it further. I shouldn't even be at the computer and really need to get my butt back in bed but I had to vent. Thanks guys.

This is just crazy...gogently

Posted 2/11/2007 1:53 PM (GMT 0)
Gogently - good to hear from you. I am sorry to hear of these problems you are having. Was the on-call doctor a surgeon? I thought you were going to have a laparscopic done. You had an epidural. I asked my GP if I could have a Local Anesthetic Block and she said "no." Guess I need to speak to the anestheiolgist about my options. Anyway, I hope you get better soon and you improve with each day. Keep us posted.
Posted 2/11/2007 7:32 PM (GMT 0)
Hi Gogently, I am so glad you are home. I just spoke of you yesterday. I can't believe this about the opening and hope it goes away shortly or needs sutures or something. It is good to have your husband there for you. I found out that I ruptured my small intestine ileus while in the hospital which I didn't want to tell you since thats a really bad thing. I don't know how it happended since all I did was go to the bathroom and be in bed and walk some in the hospital. I knew I was dying when it happened and now I know that it was true and that my thoughts were not medication related. I was being pushed around on the stretcher all night and was totally out of it. You need to have your small intestine in order to live and he told my dad that the main thing he wanted to do was to keep me alive. I had a whole out of body type thing happen to me and felt myself coming back again and feeling a bit of energy in my fingers. It was truly the worst experience in my life when you know you can die and can't do anything about it. I am trying to remember what I was asked, let's see, I can't remember but will type back when I look it up. I really am sorry you are going through this.  I did not have any pain meds when I left the hospital. I do have a very high pain tolerance with the fibro, colon and other medical problems. I really hope you take it very slow and do not listen to anyone who tells you to go do this or that or that you should be  better by now , etc. We all recover on our own pace. I will be thinking of you and looking to talking again soon. enpointe
Posted 2/11/2007 10:45 PM (GMT 0)

Gogently -- I am glad ot hear that you are home, but sad to hear that you are having complications.  The only infection that I experienced after surgery was where they had placed the JP tube for drainage.  I too felt that they needed steri strips, antibiotics etc... but was told no.  They became infected and they finally let me place an antibiotic ointment on the openings.  It has been 3 1/2 weeks and they are finally closing up.

Phyllis B - they found out last week that I am anemic and that my liver functions are running high.  I am now having to take iron, in liquid form, on a daily basis.  They will then continue to check my bloodwork on a monthly or bimonthly basis.  They felt that the liquid form would absorb better.  I don't feel as dizzy and have fewer headaches, so I assume it is working.

Tracy

Posted 2/12/2007 12:19 AM (GMT 0)
Hi everyone, Resa, I did not have any problems with anything even though I was not cleaned out. I could'nt believe they would take me like that, but I needed the surgery very badly.

gogaently, did you just get the colectomy or do you have pouch or something. I can't believe you woke up to all of that. I would have freaked out. I hope everyone has a good night, I do not know how it is that I change to a different writing and what I pushed, does anyone know? I am going off to watch the grammys tonight at 8:00. See ya, enpointe

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