lap sub-total colectomy with ileorectal anstamosis

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worsenow!!!
Regular Member


Date Joined Jul 2008
Total Posts : 208
   Posted 7/20/2008 2:14 PM (GMT -6)   
hi everyone, I am new to this site, and wondering if anyone can give me advice please. I am struggling big time!!  I am 29 this year and June 29th of last year I had lap subtotal colectomy, for severe slow transit, which I have had since i was a baby. I hated my way of life and the op was not an easy decision. I have four young children at home. I decided after it was sold to me that I should be out of pain, sounds great eh???? well I am not. i am worse. The op itself was hell on earth. The surgeon told me my large bowel was slighlty bigger and they took away 10 ft of intestine. Before op I was lucky to have a BM once a fortnight, now I do go everyday. BUt i have been told I should be at least 3 times a day. After the op alhtough I had setbacks the feeling of going 18 times in one day was BLISS, yeh the bum was sore but heh i had been used a degree of pain all my life anyway. Now one year on, I am in more pain than ever, I am always bloated and struggling with which foods agree with me, I try not to take painkillers and use a hot water bottle for pain relief instead now i have burn marks all over the abdomen. My doc has also put me on to amitryptiline at bed for pain and to help me sleep. I am sick of this it is affecting everything I do in life. Every day is painful and with four kids and a busy hubby I can't have the time to be sore. Passing wind is also a problem, in the past 2 weeks, I have passed wind and mucous has come away too. Embarrassing and distressing. Can anyone please give advice???

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 7/21/2008 7:40 AM (GMT -6)   
i am so sorry to hear you are having pain again. 
 
I am no doctor and only had one resection, but i was told by my surgeon that after a sub total you will probably need the rest of the bowel removed, especially if old symptoms are coming back.... I am not sure how much large bowel you have left - 10ft sounds like the whole colon was taken anyway??
 
It must be so hard with four kids and all.  i also have pain and burn marks from using a 'wheat bag' that i put in the microwave oven.  also get mucus. this is from an irritable and inflammed rectum or bowel usually.  please get to see your consultant as soon as..i am also on amitriptyline - good for anxiety -
 
i hope you get some relief soon...please let us know.
karen x
1997: Diagnosed IBS
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome/Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate colonic inertia;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  Always in discomfort/pain. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


worsenow!!!
Regular Member


Date Joined Jul 2008
Total Posts : 208
   Posted 7/21/2008 8:58 AM (GMT -6)   
thanks for your concern Karen. I have the 1st year follow up with my consultant in 2 days, and I am nervous to say the least, yes the full of the large intestine was removed but the just reattached the small bowel to the anal canal, I was dreading being told I would need a bag. Still dreading it, no idea what they will do on Wednesday, probably x-ray in the first instance, but yeh they told me that because of the amount of bowel that was taken away food should only be in my system for at the most 6hours, sometimes its more than 24 hrs. I am finding it very hard to cope with, my husband is a rock though and is very understanding, cos it also affects our sex life. My tummy is near enough always sore, and because that is sore it has a knock on effect on my back. Yeh the amytriptiline is for pain and sleeping, I am on fluoxtine during the day for anxiety, Been suffering with this since before I can remember and sometimes I just feel too sorry for myself. Just keep thinking that what I am going through isn't right, and so unfair. And what is this food intolerance all about??????? I SEEM to have an intolerance to everything I like but my body copes with crappy food!!!
Amanda xx

missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 7/21/2008 7:03 PM (GMT -6)   
I am sorry to hear you are suffering, your doctor probably needs to do some more testing to see what is going on. It could be that you have something as simple as a bad bacterial overgrowth, that would explain pain (which could be gas) and food intolerances. I have had bacterial overgrowth before and it is not very difficult to treat. Your small bowel also could have slowed down some, my gastro said often in people who have colonic inertia, once the colon comes out, the next portion slows down, there are tests that could show that. Also, have you ever been tested for pelvic floor dysfunction? If you have gone through child birth, that right there can really do a number on your pelvic floor, as does constipation for years on end. I think your doctor will be able to figure out what is going on. Stay positive and remember you have many "brothers and sisters" out there going through the same exact thing you are. You certainly are not alone.
Sigmoid Resection due to sigmoidocele 3/07
Total Colectomy due to colonic inertia 2/08


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 7/21/2008 7:33 PM (GMT -6)   
Worse
 
I'm another one that is still having problems, but I don't go unless I take Lactulose. Mine was supposed to be a total, but the surgeon decided to leave about two feet because it looked okay. So, needless to say it's starting to look like I'm going to be going in again to have the rest removed.
Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son with UC; taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira.
Husband with ankylosing spondylitis and psoriatic arthritis.


Booka
Regular Member


Date Joined May 2008
Total Posts : 60
   Posted 7/21/2008 10:16 PM (GMT -6)   
Hi Worse...
Your story sounds alot like my daughters...I just wanted to encourage you ,my daughter ended up getting a bag,after many s/x,many tests,many medicines
11 years of not going to the bathroom...we just spent the past 2 months in the hospital and on the 9th she finally got a bag!! She wanted it,I wanted it for her...she wanted a life!!!It has only been 2 weeks,but she is doing great!! She can,t wait to totally heal so she can eat,play,and go to the bathroom...The bag has given her a life that she has never known...She asked me and her drs,why they waited so long to do this???This web site was a great help...read the posts from people w/ bags,and you will hear hope,and you will see that most of the people would not go back to life before the bag...I can,t wait to see what my daughter is going to do...theres no holding her back now!!!No pain,no meds,no more hospital stays...just think of the freedom it would give your whole family..I will be praying for you,and if you have questions,or just want to talk, you are in the right place!!
Krista & Takera

worsenow!!!
Regular Member


Date Joined Jul 2008
Total Posts : 208
   Posted 7/22/2008 1:57 PM (GMT -6)   
Missvirginiagirl
Yeh ive got 4 boys, One nearly 9 twins nearly 6 and toddler going on 2. Strange you mention the pelvic stuff cos lately the pain has been all over the tummy but also low down in the pubic area I just thought it was the end of healing for the scar at the c-section site.
Terri
How are your kids?Do they now have the same problem? Thankfully my kids seem to have been spared this crappy existence. Let me know if you are going to get a bag. We can share our worries together.
Krista & Takera
I had severe constipation from a baby. DRS told my mum back in '79 'put a little bit of soap into the inside of my bum' that would help, yeh right. Weird thing is I was ok between 8-11yrs then it was back with a vengeance

worsenow!!!
Regular Member


Date Joined Jul 2008
Total Posts : 208
   Posted 7/22/2008 2:05 PM (GMT -6)   
TO EVERYONE
Thank you for replying to my question, I sometimes do feel alone, sometimes feel like an idiot and hypochondriac. I know what I am feeling is normal, but I didn't feel normal until reading this site. I just wish I had come across it before now. I am very scared at the prospect of a bag, and all i seem to wear these days in baggy jogging trousers, will that still be the same with a bag, or does life realy begin with a bag. I still feel so young and have always thought of bags for old people that live in care homes. Very naive I know but this has always scared me. I mean how will kids be with me when they see what I have????Maybe I am getting ahead of myself, I have the consultant tomorrow, Thank you all for giving me a little bit of hope. If its ok with everyone can we keep in touch please. My name is Amanda and I live in town called Peterhead, in Aberdeenshire, Scotland. It would be so nice to make friends with fellow sufferers
xxxx

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 7/22/2008 6:43 PM (GMT -6)   

And don't overlook that some of your prescription meds could also be causing your bowel to slow down.

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


spasman
Regular Member


Date Joined Jul 2006
Total Posts : 361
   Posted 7/22/2008 8:40 PM (GMT -6)   
GOOD point Sue.I haven't had pain meds/constipation but i've heard it could happen.
-IBS induced by NSAID
-IBS-A,C with meteorism(trapped gas) and pubic burning-
 


worsenow!!!
Regular Member


Date Joined Jul 2008
Total Posts : 208
   Posted 7/23/2008 2:50 PM (GMT -6)   
Hi everyone well I went to the hospital today and seen a consultant. They think the operation has been a sucess, but not a complete sucess. Good cos I have a BM once a day bad cos of the pain and bloating. Think its is all caused by adhesions on the small bowel, and the fact that my small bowel keeps getting obstructed, albeit temp. But cause of the obstruction and adhesions the bowel ends up being quite restricted which is prob making me think I am contstipated when not. But also I have been reffered to a dietician asap, doc also thinks that is causing me pain because of the numerous food alergies gained since surgery. I have also been put on new meds to help cope with the pain and meds for to counterbalance the effect on the stomach. I feel like a pharmacist!!! Started the meds todays, have a little heartburn but hopefully that will will ease through time. I can also expandon my family if I want which is great news, Hubby and I over the moon. But we will wait until my health is sorted. It won't be happening yet, but the future looks good. Lots of things to try to alleviate my symptoms before more surgery. Thank goodness. I was so worried that nothing else would be able to be done. Thanks to everyone for words of hope and encouragement. How are everyone else doing???? amanda xxx

missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 7/23/2008 5:20 PM (GMT -6)   
Hey Amanda,

I have had four bowel obstructions and I know how fun they are..... Three of mine passed on their own, one I had to be dilated (the anastamosis from my first surgery had narrowed real small and nothing could pass through). I am glad your visit went well and you have a better outlook!!! I can so relate to what you are going through. It is hard because it is not something most people can understand, even when they want to, they cannot. Suffering your whole life (as have I) with constipation really messes with your psyche. It is hard because you are young and want to wear the tight shirt and go out with friends, but your bloated distended stomach and the pain keep you at home in sweats curled up on the couch. Just knowing you are not alone helps so much, and you are not alone. If you ever need a friend, I would always be available to talk.
Sigmoid Resection due to sigmoidocele 3/07
Total Colectomy due to colonic inertia 2/08

Post Edited (missvirginiagirl) : 7/23/2008 6:26:28 PM (GMT-6)


worsenow!!!
Regular Member


Date Joined Jul 2008
Total Posts : 208
   Posted 7/24/2008 4:08 AM (GMT -6)   
hi missvirginia
aren't the bowels a blast!!!! i would like to chat more with you as you seem to know exaclty what i am going through. If you would like to chat my email is jane2709@aol.com xxx

colectomies in common
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/24/2008 5:09 PM (GMT -6)   
Hello to all on this board:
I have dealt with multiple health problems for much of my adult life, namely spinal bifida requiring multiple surgeries, fibromyalgia, chronic fatigue syndrome, diabetes, and hypertension. about 5 years ago, after my last spine surgery, I began wearing a duragesic pain patch and it has been the best thing to control chronic pain that I deal with daily. Also, after my last lumbar spine surgery, I began dealing with constipation. Of course, it was assumed that perhaps the narcotic in the patch could be causing or at least contributing to the constipation. But when followed up by a GI, I was told I had one more "classic" chronic problem and that was IBS. So for about 3-4 years, I used Miralax once or twice a day. It seemed to help in the beginning and for awhile, but gradually helped less and less over time. In Feb 2007, it all came to an abrupt halt. I was away on vacation and passed out trying to go to the bathroom (severe pain and rectal bleeding). My family called an ambulance and I was taken to the hospital. I was found to be obstructed by my own stool. I will skip over the gory details, but after 5 days of hospitalization, an attempt to do 2 colonoscopies, then another 5 months once we returned home of tests after tests and doctor after doctor, I was told that more than likely, my nerves in my spine caused my colon to shut down. During this time, I struggled and worried constantly to manage to go once or twice a week. I was told I had no choice but to remove the large colon. They removed all but 5-6 inches in May 2007 and what a horrible experience the post op and recovery was! I did not think I was going to survive it with one set back after another, but after a 10 day hospital stay, things started looking up and I came home. All in all, I have to say, I then began to do well. BUT, I am always extremely gassy and the noises - well, it sounds like a freight train moving around in my belly. I go every day, sometimes once, but usually at least 2-3 times, so I have been happy with that result. However, I have not ever felt like I've gotten my strength back and have complained of more fatigue than ever (even knowing I have the fibromyalgia and chronic fatigue syndrome). I mean, I MUST get a minimum of 12 hours a night sleep, and nap a couple of times during the day on a GOOD day. There are days when I don't even get dressed, much less move from in front of the tv in my recliner chair. And I mean I cannot even force myself to put one foot in front of the other. So, several months ago, they did blood work and found me to be anemic, VERY low in ferritin and folic acid. After being told for a couple of months that I must go back to a GI, I did and after endoscopy and a flex sigmoid, I was told that I am bleeding at the connection - where they connected the small intestine to the rectum. Thus the cause for the anemia. We have begun other tests now and they say that my small intestine has very slow motility and that even though I am going, it takes about 36 hours from ingestion for the waste to pass. The GI is going to "burn" the connection in hopes of stopping the bleeding to get the anemia under control and she has told me to begin taking Domperione, which is only available through Canada, to speed things up in the small intestine. But she also tells me that the burning procedure is not a permanent fix, but that it will "buy me time". So, I am starting to believe that I will end up with a "bag" and am petrified. I don't think I'll ever leave my house if I have to go that drastic and I cannot even imagine recovering from another colon surgery. The last one was brutal. So, what I thought was over a year ago, is still showing its ugly face. Does anyone have a similar experience with a better outlook and outcome? I so need some encouragement and who best to understand than someone who has been where I am at? Thanks for your listening ear and whatever response you might have. I'm glad to know I can come here to swap stories and make friends with others in my shoes.
God bless!

worsenow!!!
Regular Member


Date Joined Jul 2008
Total Posts : 208
   Posted 7/25/2008 5:05 AM (GMT -6)   
welcome colectomy in common
someone here told me i wasn't alone and they were so right, neither are you. Always someone here to listen help and advise. You are such a strong person, you have been through so much but you are still here to tell your tale! A positive!! you can get through it, i believe in you. Yeh the op is something else isn't it. For the first time i too didn't think i'd get through it but i did, so did you. Youve done it once and if it comes to it you can do it again. The noises, well i thought i was the only one, sometimes i feel like the noises would be best placed in a zoo. OOOPs hippo this time, ooops there goes the angry lion. All the blooming time. people who don't know me must think i am starving, those who know me laugh it off. My hubby and friends get all excited if i go to the toilet!!! My best advice for you and anyone else like you is laughing!!!!! be silly act silly do whatever you have to, to make yourself laugh. Laugh at that awful smell laugh at the awful noises and do whooopdy do if get a bm. I do it helps. It can be very very hard to stay positive so my family and friends deliberatly make me laugh. If your friends can't understand enough to try and make you smile through this crappy time then are they really worth being in your life. I have lost friends, 1 because it was 8 weeks after surgery and i was too weak to travel 2 hrs and go to their wedding. I couldn't help it but realise they are not worth being in my life. THose are worthy of my friendsship are here with me now, through the good the bad and the downright smelly!!!! and you don't need to hide the gory details from us here, we have been there and are not put off by the bad stuff. I too am petrified about a bag, and because i feel that i will eventually end up with one. But i am trying to convince myself that if that is what it takes to lead a semi-normal life then so be it. Everyone here who has a bag seems to have had their lives turned around for the better. My email is jane2709@aol.com if you would like to chat more. take care and you as many others on this forum will be in my thoughts!!!
amanda xxx

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1245
   Posted 7/25/2008 8:16 AM (GMT -6)   
When my ileostomy starts to play up and make noises, I just make the excuse that I'm hungry. After all, the noises are coming from the front of me and there is no tell tale smell to give the game away. I'll always remember one 'educational day' at work (one of those compulsory educational courses) where my stoma decided to make her presence heard - everyone heard her! In the end, after putting my arm across her to try and muffle her with no success, etc I just said "I can't understand why my tummy is hungry since I had a big breakfast" and everyone laughed after that! I guess it's all in the way YOU look at and handle it!
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


colectomies in common
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/25/2008 8:24 AM (GMT -6)   
THANKS WORSENOW FOR YOUR ENCOURAGING WORDS. YOU ARE RIGHT, LAUGHTER IS THE BEST MEDICINE. I HAVEN'T LOST ANY FRIENDS YET, BUT THEY ALL SEE THAT I DON'T HAVE THE STAMINA TO DO THE THINGS I USED TO DO AND SO WE DON'T GET TOGETHER NEARLY LIKE WE DID. BUT THEY ARE BUSY TOO WITH THEIR LIVES, AND SO FAR THEY DON'T TAKE IT PERSONAL. I'LL EMAIL YOU SO WE CAN CHAT MORE.

colectomies in common
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/25/2008 8:34 AM (GMT -6)   
Shaz032 - I love your attitude and sense of humor!!!! And I love your quote too. You have adjusted well. Thanks for a healthy dose of optimism. I must strive to do the same.
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