new to this forum and very scared of surgery june 20th

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mommyphotographer
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Date Joined May 2008
Total Posts : 159
   Posted 6/11/2008 7:13 PM (GMT -6)   
I am having surgery june 20 and i am so scared but sooooooooo excited to get it done. I have suffered since i was born of constipation and since no doctor ever did anything for me over the years except tell me it is a habit to not poop and to eat more fiber.............. i was so mad at that doctor i could of spit on him. but anyway recently i found a wonderful doctor who did test on me and found my colon just plan old dont work. and now my colon is all wound up in my stomach and there is feets of extra colon. So now i am going to be getting all removed except anywhere from 6 to 14 inches. (he wont know till he gets in there to operate) It will be open surgery and i am so miserable i dont even care about the scare.  I have went from 120 all my life to about 145 in the past 2 years and he said it is related to my colon and i pray to God i just feel better and loose this extra belly weight. I have felt really bad the past 2 years and i am so ready for this but so scared also. I cant eat tuesday,wednesday,thursday and my surgery is on friday.. anyone have any words of wisdom for me... Do you get to shower ? and how long before you all got to eat? and so on.  My surgery is in michigan with Dr Deen . has any one had him as their doctor. He seems to be the best i have ever had. and i feel good about it but i am still wanting to talk to anyone who had him.

mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 6/11/2008 7:48 PM (GMT -6)   
anyone out there.............?? I really want to talk to you guys .. and hear some pointers.. or just to compair some stories.

Irish_Mom
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Date Joined Apr 2007
Total Posts : 385
   Posted 6/11/2008 8:50 PM (GMT -6)   
I also had a subtotal, but mine was done laparoscopically. If I remember right, I was allowed food (soup, popsicles) on day three. It's according to when you start producing bowel sounds. I was in the hospital six days counting the day of surgery and went back to work after four weeks.

Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son (HLA B27 positive) diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 6/11/2008 9:04 PM (GMT -6)   
i didnt have the same surgery, i have a perm ileo, but i was allowed to eat real food on day three also. It was ice chips the first day, until really late that night i got water.
THe next day was juice and jello, stuff like that
then a bland diet for a few days, then a low residue diet for six weeks after surgery.
I know it's so scary when you are getting ready for surgery, just keepign thinking of how much better you will feel when it is over! that helped me alot!
a few things you should take to the hospital are hand wipes, puzzle books, something like that, chapstick, lotion. Take your own soap and shampoo, i didnt' take a shower myself at the hosptial, i didnt' want to, but they let some people shower.

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/12/2008 9:53 AM (GMT -6)   
My surgery was done laparoscopically so my recovery time and such might have been quicker then with open surgery.  My surgery was on a Tuesday afternoon and I went home on Friday.  As far as letting you eat it all depends on output and bowel sounds.  Once your gut wakes up they start with a clear liquid diet and progress from there.  They allowed me to take showers, I just couldn't use soap on the incision sites.  This may be different with open surgery since there will be a much larger incision site.
 
I can completely understand being scared, I was scared right up to the minute that they knocked me out for surgery.  The one bonus with UC was that I was told I would feel so much better after the surgery.  I assumed that this meant after a month or two I would notice a difference but it was within eight hours after surgery that I fealt "healthy".  I am not sure if it will work the same with your situation but I am sure that once they get your system working better you will notice improvements so that is something to look forward to.
 
If you have any specific questions ask away, I am sure someone will have an answer.  I will be praying for you that your surgery will give you back your life and that you have a speedy recovery.  And welcome to the site, you will find a ton of people here to help support you through these scary times.  I assume that you will have some sort of ostomy for a while either a permanant ileo or loop ileo if they are going to reconnect you.  You might want to research ileostomies and colectomies.  Waking up with the appliances on your belly can be a shock so researching it will at least get you used to the idea. 
 
John

Total Colectomy with End Ileostomy May 27th, 2008


mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 6/12/2008 12:36 PM (GMT -6)   
thank you so much for your reply. I am very nervous about this but i want it so bad also. That shows how bad i must feel to want someone to cut me open and take out my plumbing. I keep telling my self i know i cant feel any worse then i feel already............this is another stupid question. how soon did any of you get back into shape or get to ton up your belly again. or didnt you ever get to. for those how have sorta slimmer bellies did it like make your belly so it no longer looked slimmer. if that makes sence. did it like wreck the muscles in there to be cut wide open. I have lots of questions and hope to come on here again tonight but for now i have to get off and get my work done... please keep the tips coming.......... one more question. did any of you not have alot of support from your husband or wife. or just they are not the loving type so you feel like your going to be all alone or have to face this alone. I am worried about this also. Long story

mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 6/12/2008 1:01 PM (GMT -6)   
do you sleep like all the time..........are you in alot of pain after surgery or does the meds stop the pain or do they also make you loopy feeling, do you feel hungry or just so much in pain you dont care about eating that bad, anyone here have trouble with their potassium dropping and haveing alot of problems with that. I had mine drop so low just from the prep from the colonoscopy and had to be in the hospital for 24 hours. so now i am worried about that alittle also. but i will be taking potassium during the prep this time.
Keep your commments comig . i appreciate everything you have to say...........anyone feel like being online after surgery............ does your hospital have high speed or computers to use. or can you take your lap top........ Just stupid questions. I just want to get this whole thing over and behind me. He said i wont have a bag at all inless i am not cleaned out. which i have to be on the prep for more then the normal amount to get me cleaned out . hopefully.
and by the way i dont understand your different procedures like some of you said on here already. I tell ya i am new new new to this ........what is a UC.......??

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 6/12/2008 1:20 PM (GMT -6)   
UC= ulcerative colitis. It's the opposite problem of CI (colonic inertia or chronic constipation). UCers typically have chronic diarrhea amongst other symptoms. Surgery is painful, any abdominal surgery is painful but the hospital should be able to control your pain. You won't get food for some time and you won't be hungry. I think it was around day 5 when I had food but of course I think my surgery (jpouch) is more complicated than yours. Nevertheless you probably won't miss food. In fact you'll be lucky if you have an attention span of a gnat for several days. Zoning out the TV or listening to music was about the best I could do. I had to have potassium too and I hated it. Too me the potassium IV was far more painful than surgery! Every hospital is different in terms of internet and computer access. You can call your hospital in advance of your procedure and inquire as to what they offer.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 6/12/2008 5:15 PM (GMT -6)   
thank you for your responce. I know my questions are strange but i am just curious about a bunch of silly things i dont want to ask the doctor on i guess because it sounds to stupid.. LOL but i know you guys understand how i feel. I appreciate all your help on here. I am just ready to be done with it and move on. I have another stupid question. do you think after 6 weeks i will feel like going camping with my family. my kids and hubby would like to go but i am not sure it will happen if i am in to much pain. how did you guys feel..

mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 6/12/2008 5:51 PM (GMT -6)   
my mother in law just asked me what types of food did you eat when you got home. was it soft foods or normal stuff.....................

SubColectomyHereICome
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 6/12/2008 6:15 PM (GMT -6)   
Hi mommyphotographer. I can completely relate.... I am having a subtotal colectomy this Tuesday, the 17th. I too am very nervous (and getting more and more nervous as the days progress), but I also know that it will be worth it. Our stories are pretty much the same. I have had severe constipation for as long as I can remember, and I finally found a doctor about 6 mos. ago who is willing to help me. My constipation has been the worst in the last two years, and I have gained weight... probably 5-10 lbs. but I don't gain weight easily. I wonder if it is because of my clogged up colon. :) I had my pre-op appointment today and I admit it made me feel a little bit more at ease... I think I'm more scared about the epidural and NG tube than anything. mommyphotographer, best of luck to you. I too have a TON of questions, so I'll probably be checking in this forum also.

mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 6/12/2008 6:27 PM (GMT -6)   
so nice to meet someone going thru the same thing. I would love to chat with you in a different way then just on here. i have a msn account . which is coloskyphoto@live.com if you want to look me up. that would be great. How old are you. i am 37 . we sound like we have the SAME story......... where are you from. I am from michigan.... I would love to stay in contact with you. please look me up

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/12/2008 7:21 PM (GMT -6)   
when you come home you get to eat normal foods only you need to stay on a low residue diet, that means things that are easier to digest. Like no cabbage, or fresh veggies or fruit, no nuts, they told me to stay away from stringy (or tough) meats, like roast beef, or bbq. They will give you a list or you can just do a search for "low residue diet" you would be suprised at what all is on it though. The first week i came home i ate cheese ravoli three times a day! just be careful of foods that cause gas, like chili or soemthing like that.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/12/2008 7:27 PM (GMT -6)   
oh i forgot to answer a few questions of yours, lol.
You will be loopy on the pain meds but you will probably be glad you are loopy, lol. I liked it anyway!
I didn't have to have the potassium that time, but i have had to have it before and i hated it! you shouldn't feel hungry, cause the fluids keep you full feeling.
As for toning your stomach up, once you have a major stomach surgery, or any time the stomach muscles are cut (like a c-section even) it makes it harder for the stomach to tone back up. You will have swelling for probaby two or three months, it shoudl go away though. I had a pretty slim stomach, but milkshakes have gotten rid of that for me! But i have been going to a gym for a few months and i am doing the ab machines and such and they are helping. I had started exercising and such about three months after surgery. Mainly i took so long because i was being lazy, lol.
i dont know what kind of camping you are talkign about, you may not feel like trekking ten miles through the woods up a mountain to a campsite, but i would think you would feel good enough to do camping like at a campground or soemthing.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 6/12/2008 8:22 PM (GMT -6)   
Provided you have no complications camping may be doable.  I went camping 6 weeks after surgery.  I have a pretty strong perseverance and don't let much stop me so my stubborness got me out of the house.  I did fine with the camping.  You can always go home if it doesn't work for you.
 
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 6/13/2008 2:22 PM (GMT -6)   
Hello mommyphotographer,

I had a sub-total colectomy Sept. 5, 2007, and had it with an open incision. I was also nervous about the surgery before, having had about 3 months to think about it beforehand.
My surgery was not for CI, but because of pre-cancerous cell activity on the right side of my colon after about 28 years of Ulcerative Colitis. They took all my colon out from the abdominal cavity, leaving the rectum and a couple of inches of the bottom of the sigmoid colon, re-attaching the ileum to what was left.
My surgery was done at University Hospital in Denver and my surgeon was excellent. I did have some short-term complications, but am doing very well now. My intestines didn't "wake up" and start working for about 12 days after the surgery so I was in the hospital for 2 weeks, losing about 20 pounds. It's pretty unusual to take that long for the intestines to begin working again but it can happen. The surgeon had told me that I would probably go home 5-6 days post-op but it didn't work that way for me. My age might have been a factor, although I was in pretty good shape, running about 3 times a week for 2-3 miles each time. I was 53 when my surgery was done and I felt every bit of that while in the hospital. This is a major surgery and it will probably take about 6 weeks before you get close to having normal energy levels. I went back to work after 6 weeks, but would probably have done better waiting another couple of weeks before going back.
I ate a low-fiber/low-residue diet at first to help recovery and I still stick to it for the most part. The worst thing for me to eat has been cole slaw (raw cabbage), tossed salads, and spicy Chinese food. Oddly enough, I can tolerate Mexican food pretty well, but I avoid the really spicy stuff.
I have a pretty long vertical scar and mine is worse than some because about 2 inches of my incision pulled open 9 days post-op, when they tried to discharge me from the hospital. They took my staples out that day, putting steri-strips on the incision, and while waiting for a prescription at the hospital pharmacy I began throwing up. I was re-admitted to the hospital and ended up staying another 5 days.
All in all it was a good long-term outcome for me. They found a very small cancerous lesion in my colon after it was removed but it was so small and still contained in the inner lining of the colon so I didn't even have to go through chemo. I have about 4 bm's a day, on average, and can even go through most days without having one at work. I use a little dry toilet paper then flushable wet wipes to finish. I found that using dry TP only made me pretty raw.
I know I had complications that most people don't have and I'm not trying to scare your. I'm really doing very well now.
I wish you a speed recovery after your surgery and let me know if you have any more questions.
53 yr old male, UC since 1978
800mg Asacol x 3 daily
500 mg Pentasa x 4 daily
Multivitamin
Boniva(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)

Sub-total colectomy with ileo-sigmoid anastomosis 9/5/2007


mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 6/13/2008 7:56 PM (GMT -6)   
this lady i talked to on the phone ( a friend of a friend) said she has a j pouch and that she has to take antibiotics the rest of her life or if she dont she will leak poop out her rectum. has anyone else had this happen to them. I am hoping that i dont end up with a bag and that i dont poop myself all the time. (to be blunt) does any of you have the problem.
How long did your surgerys take. and how long before you woke up and how long before they make you get up and start to walk and so on. just curious if you all just sleep all day after surgery.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 6/13/2008 8:13 PM (GMT -6)   
Since you are not having a jpouch and you didn't have UC this lady's condition shouldn't worry you.  What she has is called pouchitis and only occurs in jpouch patients (or k-pouch patients).  The severity of her pouchitis occurs in about 1-5% of pouch patients.  As for walking, you will be forced to get out of bed the day after surgery and encouraged to walk.  This will help get your bowels awakened and will aid in your recovery.
 
My surgery for a jpouch took 1.5 hours.
 
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/14/2008 8:36 AM (GMT -6)   
ucRick-to help with the salad, use the lettuce shreds, i know that Fresh Express salad company makes them, it is much easier to digest them, and leave the red stuff off. Also take off the tomatos,although you probably can't get any of those right now anyway!

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 6/14/2008 2:45 PM (GMT -6)   
Hey there.....just saw your message. I had my surgery on jan 28 and also had my surgery in Michigan. I have not heard of Dr. Deen, but I am sure he is great. I had mine done at spectrum in grand rapids, mi with dr. dujovny. I had mine done lapriscopically. I was in the hospital for nine days. I was readmitted a month later for another 8 days i think. I had some complications after surgery.....but i would never change having the surgery. I am four and a half months post op and having some issues, but still feel like i have my life back. i was at my heaviest too and now i am back to normal. i dropped 22 lbs. hope your doing well

mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 6/14/2008 5:09 PM (GMT -6)   
i was always wondering if you cant eat healthy foods now. seems like i have heard several people say they cant eat fruit or vegis. this the case with any of you.................

XtremeMisery.. what was wrong with you that you had to be re admitted. and what did they do to help you. what is going on with you now. and will you be getting it taking care of again.

I appreacite any comments you all have for me

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 6/14/2008 8:43 PM (GMT -6)   
With jpouchers it seems everyone responds to foods differently.  My diet is about 90% fresh fruit and vegetables.  It was the same diet I had prior to surgery too.
 
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/14/2008 9:59 PM (GMT -6)   
i eat lots of fruits and veggies
i think what you may have been readign is that at first, def for the first six weeks, you shoudl stay away from them, and after that, you should introduce them slowly, because they are harder to digest.
I just started addign things a little at a time, and now eat just whatever!

Scrappyjrt
Regular Member


Date Joined Jul 2006
Total Posts : 212
   Posted 6/15/2008 5:52 AM (GMT -6)   
Hi mommy and summer. I had my colostomy one year ago,due to diverticulosis and UC. I can't even remember a time I didn't have pain and chronic constipation and dehydration. I am so glad I got rid of the cursed sigmoid colon,and would do it again if I had to. I am 55 and suffered my whole life from gut problems. If you want to ask me any questions,no matter what they are ,PM me okay? I will try to answer them honestly and clearly. Scrappyjrt

 

             


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10404
   Posted 6/15/2008 8:49 AM (GMT -6)   
Hi, I haven't had a colon resection, but have had three other surgeries in the past three years, so I may be able to set your mind to rest about pain. Generally hospitals now use PCA, or patient-controlled anesthesia, after surgery. It dispenses pain medication into your IV when you press the button. They have it set so you can only take so much to prevent overdosing, but you control it. It's much better since you don't have to wait for someone to bring you pain meds. I'd suggest the first 12 to 24 hours, each time you wake up, go ahead and push the button. It's a lot easier to prevent pain than to make it go away. And if you've never had IV analgesia before, I think you'll be pleasantly surprised at how quickly it takes effect.

Good luck to both of you with your surgeries.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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