Ileostomy takedown

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mslee4evr
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/30/2009 2:58 PM (GMT -6)   
Need help.  Had my takedown on 11/23/09 and really wasn't told what to expect.  Can you all help me?
 
I am at a phase where my body feels like it has to have a bowel movement, i will go and it is just little pieces, but i still feel the pressure there in the rectum and it hurts to the point that my bottom bleeds.  Another thing is that i can do this like 10-20 times a day.  If I don't eat too often, like in the evening, i know that i will have a BM the next evening.
 
is this normal?

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 12/30/2009 5:06 PM (GMT -6)   
Did you have any outlet problems before the take down? Like anismus? Do you still have your colon? Have you tried miralax to see if this will help you have a more complete move?

mslee4evr
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/30/2009 5:15 PM (GMT -6)   
had colo-rectal cancer.  tumor removef and still have colon.  tried miralax on Monday hoping i would have a full bowel movement....didn't work, just made for a looser stool and still as frequent.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 12/31/2009 7:08 AM (GMT -6)   
I had a temporary colostomy for rectal cancer (they removed 90% of my sigmoid and 15 inches of my colon). I am reconnected now but am left with multiple bm's each day. I had to change the way I ate and what I ate - plain food, small portions, etc.

You are still in the adjustment stage I believe. It takes times to adjust your diet accordingly after a takedown.

That said, I suspect you won't need to be on a diet like mine (low residue) but at the very least I would greatly encourage you to:

A. Keep a food journal (record every single thing you eat, drink each day. Record if you take meds, if you've been sick with a cold, under a lot of stress, etc.). Why is all this info important - well stress, medications, etc. can throw off your diet and wreak havoc on the GI tract.

B. Eat smaller meals. Do not overwhelm your system with 3 large meals. That way of eating could be a thing of the past. By smaller meals I mean small side salad and cup of soup or half sandwich when dining out. Or lunch portions instead of dinner sized portions. Or precut your dinner sized entree when arriving at your table, in half before you begin to eat. After you've eaten half, if you're full take the rest home. I haven't eaten a regular, full sized meal in over 10 years. This is just how I have to eat now.

C. I found that eating for 12 hours and not eating for 12 hours, helped me get a good night's sleep. I'd have breakfast by 7 am. Spacing out small meals throughout the day and then stopped eating solids by 7 pm. If I became hungry after 7 pm, I would just drink 1 to 2 tall glasses of water. This tricked my stomach into thinking I was eating but I wasn't. I ended up giving my GI tract a rest and break from so much bm activity. I slept great by the way too! (note I wish I still did this, the 12 hour on/off food thing, I have eaten evening snacks in the past several years and not been as strong about all of this as I was post-op).

D. You may want to give up the dream of having one full bm each day, as you did before cancer/resection, etc. I have absolutely no idea what that is like anymore!

Find the diet that works for you, the OTC meds that help you (I find that a pediatric dose of Colace is enough stool softener to keep things consistent for my needs) and strive for several bm's a day. I was told that 1-4 bm's a day are in the normal range (for non-IBS, colon resection folks). 5-8 is still somewhat normal, post-op resection wise. I am however way more than that and in the extreme end of the spectrum (why I eat a LRD).

I accepted long ago I will never return to my old one dump a day mode. Internally I am reconstructed and the stool has to come out. So I eat accordingly now to make my situation as "normal" as possible.

You'll find your new normalcy, it just takes a lot of tweaking (diet, meds) and patience. Give it time and take notes for everything you try. You'll be glad you kept good records of what worked for you, what didn't and then in the future you'll have your notes to refer to.

Wishing you success with all of this!
Mary/Marsky
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening


mslee4evr
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/31/2009 11:06 AM (GMT -6)   
What exactly does the Colace do?  I have a regular stool.  Not loose or anything. 
 
I have been told it will take awhile, but I guess I just needed to hear from someone that what I am going thru is normal.  That the pain I am going thru is not just in my head.
 
Also that I have a j=pouch makes a difference.
 
Thank you so much.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 12/31/2009 3:32 PM (GMT -6)   
The Colace is a mild stool softener, my GYN doctor wanted me on it to keep me from having an obstruction (since I have internal scar tissue near my left ovary). I had to laugh when he said it because I've never had trouble going, I have trouble stopping. But along the way I did try fiber supplements, to bulk up my stool and make it more consistent but Metamucil put me in the bathroom for hours, Fiber-Con didn't do much for me so I finally listened to my GYN doctor. I gave the Colace a try and liked it. The OTC stocked 100 mg strength is too strong for my system so I have the pharmacy order 50 mg. After all this time I think I have finally found what works for me - low stress, plain diet, small meal portions, Colace, and a probiotic (Nature's Way, pill form) at bedtime. I used to eat yogurt but I am sensitive to dairy and even though the good bacteria was necessary for my gut, in yogurt form it was making things worse for me. So now I just take the Nature's Way pill each evening, along with the Colace.

I would imagine you'd find support with other people with J-pouches. Perhaps start a new topic, with the title - New patient with J-Pouch, need help with diet, meds.

I do think what you are going thru is normal. Anytime surgeons operate on the GI tract, there's an adjustment period. The first month or so after my takedown, I was confined to my bathroom and bedroom. It was AWFUL. Until I read about low residue diets.

All you may need is a fiber supplement to keep things more consistent. Has your surgeon give you any advice? Or his nurse?
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening


mslee4evr
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 1/2/2010 6:12 PM (GMT -6)   
No...that is one thing that bothered me..I received no advice from my doctor or nurse. was not told what to expect or anything. When i do call i am told that it is all normal, but still not what to expect.

i will try your suggestuon on the new topic and see what happens.

thank you so much for youe help.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/2/2010 11:14 PM (GMT -6)   
I too found such little advice from my doctor. Had hoped by now, 10 years later, they'd be giving more concrete suggestions on what to try or at least a realistic outlook. My surgeon's partner discharged me from the hospital (post-takedown) saying these words - eat anything you want, perhaps eat 4 to 6 small meals a day, go easy on spicy foods but enjoy life! Take Immodium! Can you believe it? So I left the hospital thinking I could resume my normal diet - high fiber, whole wheat products, fresh fruit, fresh produce, etc. I was a mess. I was raw from going so much as well. I discovered Stayfree Ultra-thin maxi pads, overnight type with wings. What a comfort they are to wear - a very thin protection that go way up in the back of your underwear. Not to be used as a person would use Depends but rather a disposable barrier for minor drips. Oh I had them. What I found that worked for me was the low residue diet but I didn't have a J pouch. My sigmoid (reservoir) was removed so internally stool has nowhere to collect anymore, hence why I go so much. I accepted long ago I will have multiple bm's each day, as long as I keep eating and now I do all I can to keep the stool formed and easily passed in any public bathroom. I would have trouble getting into all these stool stages - from all out D, to formed (picture rabbit poop almost), to semi-formed to putty (my least favorite stage, it tends to go on forever and requires several flushes). If I keep my stress level as low as possible, eat plain foods, avoid what I shouldn't eat, eat light as well as plain foods, and take my meds, I do okay.

I will tell you that my surgeon's partner saw me for a few post-op appts. He asked how things were going and I mentioned the LRD. He was taken back I would try something so drastic but I laughed and said - hey I was chained to the toilet and my kids are young (3rd and 6th grades then). They wanted a mom who could take them places! So long story short, he agreed the diet was safe for me. I did ask him what his approach to my rectal cancer (1 inch tumor, barely inside) would have been. He paused and then said - "a J pouch."But then he added - "even with a J pouch, you'd be experiencing 6 to 8 bm's a day." I hope these words do not upset you but I had the impression a J pouch wouldn't have made things much better for me (I'm anywhere between 10-12 to up to 20 a day, but it's the same amount of stool as pre-cancer, instead of 1 dump, it's the high number).

I see you started a new topic. Good. Hopefully others will contribute and help you.
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening


mema3
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/6/2010 9:31 PM (GMT -6)   
Hi everyone....I am new to this forum. I had a take down surgery in Aug 09. I have been having so much trouble. I may have a few good days and then probably because of something I ate, I have bm's that are extremely painful. I do not keep a journal of what I eat, and from reading different posts, I see that is important and will start doing that. I can live with the many bm's a day, but my biggest concern is the painful burning and bleeding that accompanies the bm's. I almost pass out with the pain. Then trying to wipe is so painful, that I have to strip down and take a shower or sit in the bathtub. The doctor also told me that this is all normal and that it can take up to a year for my system to adjust to the jpouch. I am four months into this adjustment period and not having much success. I have tried different creams and not had much success. When I am burning and bleeding, everything seems to make it worse. I retired from work in July 09. My first surgery was in May 09. The whole colon was removed and I had a stoma till the take down in August. I didn't do well with the stoma either. The doctor said it was not a good stoma and I would not have been able to keep it for long. I had problems with dehydration with the stoma. I ended up in the hospital at least 4 times because of it. So when it was time for the reversal, I was more than ready for it. But, my poor BUTT is really suffering with it.

If anyone could offer me some advice on everything and anything that could help me, I would greatly appreciate it.

Thanks in advance!!!!

mslee4evr
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 1/7/2010 6:51 PM (GMT -6)   
i am where you are at right now, exactly.  i can say, like with the others, what you eat definately makes a difference.  i have also been told to eat smaller portions instead of 3 big meals a day.  what we are going thru is normal.  my doctor said about 4 months, but what i have been reading it seems it will be a longer time to come to terms with our new body functions.

mema3
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/8/2010 11:19 PM (GMT -6)   
I am finally believing that you are what you eat. Because i have found that a lot of the things that i eat....no longer agree with me. I am starting today to do a journal and see if i can see a pattern of some kine. I bought the Metamucil Wafers today and thought I would give those a try. I can put up with the frequent bm's, it is just the terrible burning and bleeding that gets me down. I know we are in an adjustment period, but i thought after 4 months I would be doing better than i am. My daughters tell me to be patient, but that is hard to do when you are going through the pain. I have to say that I have improved from week 1, but I do have days where all heck breaks loose and it takes me a couple days to get to feeling better. My doctor told me it could take up to a year or more for my body to adjust. I hope keeping the journal will lessen that time. Thanks so much for replying. It is hard to explain to everyone what we are going through. But someone that has experienced what we have understand what we are saying. Thanks again, and good luck to you.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/9/2010 7:23 AM (GMT -6)   
I discovered this long ago - we are what we eat. These words are true for us who have had colon surgeries, resections, colectomies, etc.

I faithfully kept a food journal for about 2 years. I recorded every single thing I ate, drank and other info on each day. For instance if I used straws, chewed gum, took out of the normal medications for an infection (antibiotics), all was recorded. If I was stressed out about something or had skipped meals (my daughters were 4th and 7th graders, younger when diagnosed with cancer, but older about the time I was starting the food journal so we often had that busy family schedule to follow). Finally, at the bottom right hand corner of each page I would rate the day - great, good or bad/terrible day. Then later on I could flip back thru these previous pages/days to find a great day and then I would duplicate those foods and scenarios (if I had a social commitment coming up such as a wedding to attend). I would make darn sure I ate those exact foods on my great day.

Over time I didn't need my journal as much because I discovered what my main foods were for me - now bear in mind I haven't had a colectomy but just my sigmoid removed, along with 15 inches of my colon above the sigmoid removed. My pat foods list are: Bay's plain english muffins (I start each day with one), bananas, chicken/turkey, potatoes, plain white rice, white bread (Sara Lee, original, thin sliced or my local bakery's plain white bread), cottage cheese, applesauce, etc.

mema3 - I am convinced that over time you will find your main food item list too - your what I call go-to foods. These foods will turn things around for you and stop the burning or reduce it anyways. If I stay on my diet, I do not have the all out D or messy putty stool like stage (my least favorite, I need several flushes and the wiping seems to go on forever, sorry for that awful detail but somehow I don't think you mind!).

I remember using one of my daughter's discarded small school notebooks for my journal. I just used one page for each day. Anything like this will suffice. You want it to be somewhat small so you can keep it in your kitchen and stash in a drawer if company comes over. My journal was never far from me in that first 2 year phase.

Good luck. You can do this! Remain determined to figure this out. You will - I know you will.

Mary/Marsky
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening

Post Edited (Marsky) : 1/9/2010 6:36:37 AM (GMT-7)

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