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Eating issues with my stoma. Really need answers...

Posted by Slow momma, on Tue Jul 30, 2013 9:19 pm
I'm just over 4 months out from surgery and have the new stoma just 7 weeks or so. I have a problem with food intake and need to know if anyone else suffers from this or help me find a way to fix it...I never use to be a big eater even though I'm a big girl. Before surgery I'd eat a bowl of soup and bowl of cereal and that would be it for the day. Well, that's all changed. I will eat a good meal, 30 minutes later its running in my bag, and a hour later I'm hungry. Not just hungry but usually starving!! I'm like what's going on?? I eat snack stuff but don't help. I need a meal.... Now when I get hungry, and don't eat in ten minutes or so, I get sick!! I've thrown up on several occasions over this!! Is my body lacking something?? I have to take supplements for potassium, vitamin b-12, and magnesium already. Any ideas??
Reply by newhorizons, on Wed Jul 31, 2013 2:56 pm
Hi Slow momma,
I've been checking in, on and off, to see if anyone has been able to give you some advice regarding your eating issues and your stoma. I don't have the answers for you, and I don' know why you would be throwing up, but if it's continuing you should definitely see your gastroenterologist.

As far as your bag filling quickly, have you tried foods to thicken your output? I know rice, applesauce, tapioca pudding work for me. I'm not sure if you drink coffee, but it can be like turning on a faucet after that! Make sure you aren't getting dehydrated. I'm pretty new to the world of ostomies, and not sure if this helped at all. Hope things have started to improve for you.
Reply by Ewesful, on Wed Jul 31, 2013 7:09 pm
I am just short of 4 months out and have had every imaginable output!!  I was feeling like I was in a constant feeding freenzy and I was getting sick of eating -- finally things calmed down - part of the healing process but I lost far more than just the colon -- from FAP -- so my ideas may not do the same for you - I cannot eat tapioca pudding without causing the bag to really gas up - I do steam veggies and drink/sip lots of water -- I also found sweet pickle juice really helps to calm the cravings.

I found a meal with lots of mashed potato helped a lot  -- watch out for any food additives -- I eat marshmallow and peanut butter sandwiches that also help -- coffee is a disaster but I now go caffeine reduced or free and enjoy a cup once a day if I feel the desire - tea is ok but I use lots of honey and milk which makes  a difference -- crackers and cheese (not processed) - another favorite is milkshakes and real fruit popsicles - I just work at it and look for ideas that taste good!   I wish you the best -- it will get better...  I have also been told that everyone will find different things that work --

God luck - Ewesful
Reply by Snookis Mum, on Wed Jul 31, 2013 8:27 pm
Hi Slowmomma

Does the hospital where you had your surgery have a WOCN nurse and a dietician? They should be able to give you all the answers you need. I had my surgery at Sarasota Memorial, and they were absolutely fantastic.

Bananas and oatmeal also help to thicken up the output.

Good luck!

Sandi
Reply by skidder, on Wed Jul 31, 2013 8:49 pm
Hey Slowmomma!
Thru process of trial and error, pastas, rice, crackers, bread, pretzels, peanut butter, they slow my output down some and thicken the output. I know some say these food choices are not good for you but hey, at this point in my life taking care of my "Mary" is more important. I do this all in moderation since I don't want to get a blockage either. As for liquid, it would be an understatement to say I drink 24-7. I associate that to my meds. I do drink a cup of coffee in the morning and I have never had a problem. But YOU have to find, experiment the food and drink your 'gift' is comfortable with. Seeing a Dietician and an Enterostomal Nurse wouldn't be a bad idea....you can always make adjustments as things improve. Hope you get things straightened out! Once you do, believe me after 42 yrs with an ostomy, you will realize that had you not had the surgery, you could be in terrible pain or as in my case, a statistic! You'll get it right soon......good luck.
Reply by Slow momma, on Thu Aug 01, 2013 12:26 am
Thank you everyone for your helpful tips. No, I don't drink coffee...I mainly drink water and sometimes a little milk and juice. I've been trying to eat potatoes and pasta type stuff yesterday and today to help fill me up and firm up my poo. Not helped to much yet. I love peanut butter, but have a allergy. I do eat applesauce and bananas.
  I had part of my large bowel removed in my first surgery and then had to have most of my small intestines removed do to ischemic bowel disease and a blood clot, so I've had a lot of surgery done. I could of died twice. I prayed before surgery for no bag, that I didn't want to live if I had one, but I lived and have a bag. Just not sure why things are working out this way. I'm not good at coping with all this and most days I've had enough and keep saying, I hate this bag, I hate this bag, I hate this bag...I'm hoping that things do settle down for me since it has been four months now...
   My ostomy nurse nurse comes tomorrow and I'm going to have her sit down and try to help me figure all this out... I hope she has some answers..
  My big wound has been hurting this week to for some reason. It hadn't been at all for awhile..(its big/deep enough you can put 2 baseballs down in it) so trying do deal with that too..ugh..
It's amazing how your life can change in a day.
  I looked online today to find out just what " normal daily output" was for a ilieostomy person and it said 500 to 1000ml which is about 28 to 35 ounces.. Well that's not good for me as after 9 hours I was already at 46 ounces. And we're suppose to have 3 1/2 quarts of liquid to drink daily...that's about a gallon. I talked to my surgeon today and he knows my output is high and wanted me to measure it for 24  hours and let him know. I called his office to ask the nurse about my low B12 and the lady let me talk to my dr cause he was just walking past the reception area so that was a shock lol..
  I'm going to get some pepto bismol and see if that will slow the runs and help coat my sick tummy too. I've tried about everything else...
Reply by newhorizons, on Thu Aug 01, 2013 12:54 am
Hi Slow momma,
I'm glad to hear that your ostomy nurse will be seeing you. Just wondering about your wound, and what's being done to heal it. Does it require packing, or is there a woundvac on it?
Reply by Slow momma, on Sun Aug 04, 2013 4:09 pm
Yes newhorizons, I do pack my wound. They used a wound vac on me the first month, but it never worked well. It was clogging up a lot and when they would change the stuff in it it smelt so bad it about made me sick so they changed it to dry pack. It was about 4 baseballs big at that time. So pretty much what I eat goes to healing my wound. My hair suffers from it. Lol..when I brush it I get globs. But it's just hair and it will grow back better when the wound closes in a few months. Smile
   My ostomy nurse said to not worry so much it will get better. I have a lot of healing to do yet. She said to give it time. I'm not a patient person and all this is hard on me!
Reply by mara727, on Mon Aug 05, 2013 3:33 pm
I just spoke with someone today about same  subject. For me, really processed food, like ham, tons of perservatives, it makes me go with such acid, I need ice on my skin. Sorbotol, sugar free stuff- crystal light, Im a watery mess.
try stoma seal and an eakin for skin
Reply by NancyAnn, on Tue Aug 06, 2013 10:48 pm
I have always been told to eat small meals through out the day. Be sure to eat things that might bulk you up but not plug you up either. Drink plenty of water. I have a urostomy and have short bowel syndrome. I have to learn to eat a different way because I know my body has changed. I have had my urostomy for 52 years now. If you aren't sure always contact the doctor.   Hope this helps a little!
Reply by Immarsh, on Wed Aug 07, 2013 12:36 am
Hi Slow Momma,

I'll join with everyone else, to tell you that it's trial and error for the first few months or longer.   I have my ostomy for more than 50 years, and was only 15 when my "adventure started".   Foremost, what I did learn is that " what you say to yourself, really does matter".  

If you "hate" hate, hate....the bag,/ or the ostomy.....and tell that to yourself often enough, it will be self defeating.  As a teen, I came to understand that my ostomy & all the paraphanalia, were my "badges of survival....

For the last 10 years or so, my "digestion" changed, or so I thought, and was fighting off the runs and dehydration regularly...    It turns out to be sensitivity to dairy....and as much as I love cheese, dairy, ice cream etc.....no dairy = no runs for me....  I do indulge a bit on ocassion....but don't like the outcome...or increased output, or the inevitable dehydration.  
So....I drink lots of water....now eat whole grain bread etc....  oatmeal for breakfast, to get the day off to a good start...   I'm just 65, and am discovering a "new" way of eating....more vegetarian/ vegan based  ......using healthy oils, and new cooking methods.  I've been made aware of diets for people with Auto immune issues, ( I had ulcerative colitis) and although the diseased colon is out....other areas of the  body can get "inflamed".  It's a systemic condition....as is Crohns.     I wish you well......as you discover a healthier future...

Marsha
Reply by Michspo, on Wed Aug 07, 2013 11:29 am
Hello Slowmamma:   I too, am I newbie. I am 13 weeks post surgery. I had been very sick before I had my ileostomy and had lost over 40 pounds. So it is taking me a long time to gain any weight, and everything I ate would exit within an hour or so, and was all liquid. Two weeks ago, I bought a Nutribullet and have been drinking smoothies every morning. I have gained 4 more pounds. So as of today I have only gained a total of ten pounds, since surgery. My stools have been more bulky. I also take Metamucil in pill form twice a day and a probiotic I purchased at GNC. I also eat jelly beans, gummy bears and gummy life savers. It seems to be working. I was never a big eater either. I have a Pepsi in the morning, because I do not drink coffee, but need the caffeine. Then I have a smoothie, and a little breakfast; maybe an English muffin with peanut butter and butter. Then for lunch, I like Chicken Ramen and have 2 pkgs and that has a lot of calories and protein. Dinner almost anything, but try to have pasta and a little meat. We need the protein for our muscles. I had been so weak and feel a little stronger now.
With my smoothies, I have been putting spinach, blueberries, strawberries and a banana with flax seed. That will stay with me about 4-5 hours and really thickens my stool. This machine pulverizes everything, so I don't have to worry about blockage. I miss my lettuce and surgeon told me I could eat it if I chew well. I try to eat a hard boiled egg with my salads and skin my tomato and pick out seeds. Load it with cheese, I love Gorgonzola, and cream dressings.  I used to love milk, but it seems to go right through me. I have never ate as much as I have been eating lately and I do feel like vomiting too, although, I haven't had to. It seems I get very hungry about bed time. So I have an ice cream bar or any ice cream with hot fudge topping. All dairy doesn't seem to bother me, just plain old milk. I am gearing up for surgery #2, which will be a hysterectomy. I am 55 years old. But they tell me my uterus is like stuck to my colon. If I am lucky, I will have that removed and have my reversal. If not, my third surgery will be at the end of December. I have to go see a OB-GYN specialist next Monday and see if they can do all this at the same time. I need to have about 8-10 inches removed from my lower colon, due to narrowing. Still confused as to how this happened because I have never had problems with my GI system.
If you decide to add the supplements that I have mentioned, take them after a meal, as I have had whole pills come out of my stoma. Also, I have added a daily yogurt. I was getting really tired of practically living in the bathroom emptying my friggin bag. Now, I have a little more confidence when I go out. Hope this helps, because as several other ostemates have stated, it is all trial and error. Stay away from spicy food. Imodium is good to have on hand, it will slow your stool down too.
Reply by Baskingbob, on Thu Aug 08, 2013 4:01 pm
It takes more than 7-8 weeks for your system to adjust. As my doctor...always said..It takes time...I know that is soooo open ended..but its true. You just have to try and balance it out...and slowly but surely, you will have a balanced appetite. When I was at 7-8 weeks..I was having these crazy urges...I would go on a raw clam binge...like 3-4 dozen a day...for a week or two...then it was Hot pepper salad...Fresh squeezed lemonade also...it's all I wanted...and "In time" that all settled down. Keep smiling!
Reply by Ewesful, on Thu Aug 08, 2013 11:59 pm
I can relate to all of those crazy food urges -- things have settled down now - this week has been almost "normal"  and it has been 16 weeks!!  A lot of this is attributed to the Whipple surgery - it even affects the taste of water for a couple weeks .

Ewesful
Reply by yaya59, on Sun Aug 11, 2013 3:10 pm
Well Slow momma it's going to take a while to get used to the raging hunger and the disapointing nausea. But peppermint and/or ginger teas helped me. Also peppermint and/or ginger candy helps too.Bananas are good for thickening the output. But stay hydrated if you drink coffee. Sometimes I drink Pedialyte through out the day and that help with hydration besides Powerade or Gradorade.
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