Afraid to eat

[Newmol]

I am afraid to eat. It seems that eating often results in incredibly loose stools. Eating marshmallows (as suggested on this board) helped for a bit but i am having these episodes that are sometimes difficult to handle. I am afraid to eat unless I and staying home.

Now we are planning a few days away and I am fearful of eating out in restaurants and enjoying the evening activities afterwards. I suspect that after eating I will need to hurry back to the hotel room and spend the evening in the hotel room bathroom.

I am even finding that foods i ate without incident last week I now suffered cramps, gas, and diarrhea after eating them this week. I just can't seem to get a handle on what I can and cannot eat without incident.

I am getting so anxious about the trip but my family is looking so forward to it that I cannot disappoint them by staying home. I picture myself drinking a glass of water in the restaurant while my husband, daughter and her husband, and my grandchildren eat dinner at a restaurant and then me eating crackers or take-out in the hotel room when the evening activities have ended.

How have others handled situations like this?

[mypinkheaven]

Have you been taking any Imodium? Or ask your doctor for a prescription for Lomotil.

Stay away from salads and had to digest vegetables like broccoli. Plain chicken and mashed potatoes help me.

[Alessandria]

Hi! My experience: As soon as I have to start using loperamide after chemo ie day 6ish, I switch to a 'low residue diet' until the next chemo session. If I am very strict with this diet I find that I rarely have to use loperamide again that cycle and have no bloating/bowel issues at all. I had terrible bowel issues before starting this regime.

Good luck!

[AppleTree]

I was running to the toilet 1/2 way through meals...several times each meal. Sleep - forget about it - 20-30 times a night. 2 doctors told me "it takes time". Well, I was hurting and my skin bleeding so I started taking Imodium. 1 in the morning, 1 in the evening. 12 hours apart. I think it took 2 days, but it worked and now I have a routine I can live with. Best wishes to you, I hope you find relief soon.

[MissMolly]

NewMol:
I do not have your exact situation with digestive distress but share digestive distress with an ileostomy due short bowel syndrome (removal of my colon as well as removal of about 8 inches of my small intestine).

My intestinal function has never returned to even a modicum of "normal."

For almost a 1 1/2 years I suffered from recurrent paralytic ileus - and was either on and off TPN and/or only able to drink clear or thicken liquids. My digestive tract has improved to where I can eat small portions of soft foods but it would never allow for me to dine in a restaurant and eat as do "normal" people.

My advice to you is to look beyond the food component of your vacation and time with your family. Look to the time being with the company of family and friends, take enjoyment in the social bonding without food in the equation.

There is far too much emphasis on food and eating, in my opinion.

Eat what you want to eat, when you want to eat . . . it is your body. Listen to your body and its needs. Take advantage of the social connection of being in a restaurant with family and friends - and add in eating, if and only if, it is right for you.

There is nothing wrong with sitting and having a nice cup of tea. Savor the aroma and warmth of the cup. Let the other senses of your body (sight, hearing, olfaction/smell) delight in the experience. Eating food is not necessary to having a good time with others.

Most people, honestly, will not even notice if you are not eating. And if they do, you can answer as I do. "I have had surgery on my intestine that makes eating a large meal in a restaurant something that I can no longer do. I am fine with my cup of tea, and thank you for asking."

I have had to adopt this philosophy out of necessity. Perhaps this will be a temporary situation for you in which social eating in a restaurant is problematic is only short-term. Perhaps it will be a long-term problem. I guarantee you, you are not alone - lots of people have irritable intestinal tracts. Look at the aisles in any pharmacy and note the amount of space devoted to anti-acids, laxatives, Pepto Bismol, and Mylanta.

My advice: Remove the importance of food and eating from your family vacation. Eat what you want to eat, when you want to eat - by listening to your body and its needs.

What is the benefit of plowing into a large meal, in order to be socially correct, and paying the price by spending hours with intestinal distress later?

My family and friends know that I will likely never eat with them when we go out. It is no big deal.

By the way, I believe the advice of eating marshmallows applies principally to those of us with ostomies. The eating of 2-3 marshmallows, for some, quiets the digestive tract and fecal output from a stoma, allowing for a period of quiet from an otherwise erupting stoma, to facilitate a pouching change.
- Karen -

[Jachut]

I agree - you have to do what you need to do.

I've got a double whammy as I have a lap band too. Not that that makes eating difficult but there is no way I want to sit and eat a meal the size most people eat. I am not super skinny or wasting away - I eat plenty - but I don't eat a whole hamburger in a sitting. I eat a meal that would fit on a bread and butter plate. I got over raised eyebrows and "was there anything wrong with your meal madam" years ago. However, I hate the emphasis on eating eating eating all the time. I find holidays with other families or friends stressful because they just want to go out to eat every single breakfast lunch and dinner and I find it hard to keep up - and that's without bowel issues - that's just because i've adapted to not being a big eater and I hate shoving food down my gullet 24/7.

I went through the eating causing rushing to the bathroom thing and it did abate for me. Now a few years later with a colostomy, I dislike eating bigger/richer/etc meals because any meal sized input causes the inevitable intestinal activity and well, I fart for an hour. So on Tuesdays for example, when we don't teach in the afternoon but meet to plan, I don't eat lunch because its so damn stressful sitting in a small room with 3 other people not being able to use your hand because you have it pressed against your stoma to stifle the noise. My workmates would accept it in an instant, they'd laugh etc but its not something I want to let loose.

There are ways to manage bowel function post surgery and immodium is a good tool but the fact is even with a "good" outcome, bowel surgery changes things for life and it can be tough to live with the side effects. Nonetheless I feel like I have a good quality of life for what I could have been living and it definitely gets better with the passage of time.

[Newmol]

Your responses are amazing. They are so thoughtful and are appreciated.

I only use Imodium when I absolutely have to because my body seems to over react to it. After taking Imodium I can go as many as 8 days without a bowel movement. This causes a whole other issue. Of course it would solve the vacation issue but at a price.

I agree that here is an over emphasis on eating in social settings. Eating out has never been easy for me since I have always been a notoriously picky eater. Now it is even more challenging - but it is a small price to pay for having the cancer gone. I think I will follow the suggestion given and just enjoy the company and ignore the food. If it bothers others I will just be honest about why I am not eating or eating very little and sip my ice water (I don't drink coffee or tea.) and leave it at that. You are right. I have to listen to my body now and do what feels right at the time.

Thank you.

[Cj51]

Are you still on chemo? I'm guessing yes? When you're done, I'd strongly suggest getting yourself onto a strong probiotic. I take VSL-3, a medical grade probiotic that my surgeon recommends to people with IBD. It made a huge, huge difference for me. I still have to watch what I eat and be somewhat careful, but taking just one per day really solved the gas problems I had after surgery, and my gut is a lot calmer than it was. I'm about nearly 5 years out from my surgery and my new normal is manageable. I can't do everything I used to do, but I'm content.

If loperamide (Imodium) disagrees with you, you might give Lomotil a try--it works totally different, and I find that while Imodium can cause constipation, I rarely have that problem with Lomotil. When it wears off, things just continue as normal. When we're on vacation, I take one pro-actively to keep things quiet and "schedule" when my bowels will be active. It doesn't always work, but most of the time it does. I wouldn't try it on this vacation--bad time for an experiment--but at some point you could give it a shot, if it agrees with your system, it could be a new weapon in your arsenal.

In the meantime, you've received some very good advice here and seem to have a handle on the best way to deal with your upcoming vacation. Best of luck to you.

Cj

[Lee]

I am even finding that foods i ate without incident last week I now suffered cramps, gas, and diarrhea after eating them this week. I just can't seem to get a handle on what I can and cannot eat without incident.

I am getting so anxious about the trip but my family is looking so forward to it that I cannot disappoint them by staying home. I picture myself drinking a glass of water in the restaurant while my husband, daughter and her husband, and my grandchildren eat dinner at a restaurant and then me eating crackers or take-out in the hotel room when the evening activities have ended.

How have others handled situations like this?

OK I'm going to throw this out there. Will not help short term, ie vacation. Butt maybe a solution down the road. Radiation destroyed majority of my rectal muscles. I was tied to the toilet/house anytime I ate. Nothing helped. Only solution, was to wait until I was home for the day to eat my first meal of the day. Surgeon was going to take muscles from another part of my body and I would have to "train" these muscles to act like rectal muscles. Goal was to get to 3 BM daily butt the reality was I could be living with 10+ BM daily. Gee I was already there.

Was sent to an ostomy nurse and that is where I learned what a colostomy was. I knew I wanted it. It truly gave me my life back. I can eat what I want and not worry how it will effect my bowels. I can be all day and not worry where the nearest bathroom is. I can play in the ocean or horseback riding and not worry about accidents. I just always carry a few supplies with me. Bottom line I'm in control.

Something to consider down the road if you can not find another solution.

Good luck, hope you have fun on your vacation.

Lee

[Lee]

There are some people who have had great success with daily enemas. Search enemas, there are several post and a few people who are experts. These daily enemas have given them there lives back. 30 mins day in the morn and they are fine for the day.

This might be a good place to start

viewtopic.php?f=1&t=41071&hilit=daily+enema

Lee

[Newmol]

I am happy to say that our trip went well. I was incredibly careful as to what and when I ate but I had no major incidents during the few days we were away and I had a wonderful time with my family. Thank you again for the advice given.

[DarknessEmbraced]

I'm glad that your trip went well with no major incidents!*hugs*