Hope you don't mind my asking

Hi caladon,

Welcome to HealingWell! 

I think what you're doing for your boyfriend is awesome!  I wish that when I had a man he was as supportive as you are.

Anyway... You should probably check out this brochure about how people with IBS feel:  IBS Brochure

Is your boyfriend's main problem D (diarrhea)?  If so, he may be able to control it with calcium.  Check out this (long, but very informative) post: Cacium info to help with D

I know you love him and you only want what's best for him... But try not push him to do things.  This will only increase his anxiety which will in turn make the IBS explosions worse.  When I have plans I absolutely don't want to miss, or can't, I take Imodium before hand.  It calms my gut and puts my mind at ease that I won't have an attack.  Had he talked to his doc about using Imodium on an as needed basis?

Again, I have to say that I think it's great you are here to try and help your boyfriend.  I think I can speak for most people on this board that WE WISH THERE WERE MORE LIKE YOU.

 

I went out on a date once with someone who knew I had IBS, and he knew I had anxiety about being in public with bathroom issues (I think all us IBSers have a public bathroom phobia to some extent).... Anyway, when he came to pick me up he brought groceries and a movie. It was so sweet! He made me dinner at my house (remove the anxiety) and we watched a movie. Best date ever!
You both might be beyond the "honeymoon" phase - but you can still do things similar to that. Plan a dinner party at home.
When going out, go somewhere he is comfortable. If you're in a group, the 2 of you could take your own car so that if he is having "issues" he can leave.
Here are a few things that almost all IBSers are sensitive to:
Anything deep fried
Sugar alcohols (glycerol, mannitol, sorbitol)
Pizza
Alcohol
Caffeine
Apples
Tomatoes
Chocolate

I can't have too much lettuce either or I will be running to the bathroom in the middle of the night.

Tell your boyfriend to be careful with the Imodium because it can have the reverse affect... C (constipation) for days. I usally only take 1/2 a dose and that stops things up for only 1 day. If I take the full dose I can expect not to poop for at least 2 days. It might sound like a nice change, but it's not. There's nothing worse than feeling like you have to go and not being able to.

We have just been talking on the forum about how we all seem to do better when we go on vacation than when we are at home. Just getting out and having nothing to do but have fun seems to make things a lot better. So I wouldn't put off having vacations, even if the local dates have to slow down. It's like getting away from house chores, work, annoying associates, etc. just makes the guts relax and function more normally; getting out just for a night doesn't seem to do as well since you tend to still dwell on all of that stuff.

I feel uncomfortable at movie theaters between having to crawl over people and then having to miss part of the movie by going to the bathroom. Same thing goes for sporting events, where you have all of that, plus long lines at the bathroom. However, there are many actitivies that you can do that don't involve food and which can be done without too much problem:

Historic sites are fun (at least to me, Miss History Major, lol) and National Historic Sites of any size always have bathrooms--provided you are there during their regular operating hours.

National Parks are nice too, but the bathrooms can be further away than at historic sites, where everything tends to be grouped together. Also, be especially mindful of the "on" season. When my parents and I got on the Blue Ridge Parkway in early April some years ago we found they still had ALL of their rest areas closed for the off-season. We ended up peeing out in the woods at one point, lol. Definitely not a good place for someone with D to be.

Toliet paper and an extra pair of underwear is never a bad thing to have in the car.

Minature Golf is fun and always has a bathroom nearby, although you may have to walk back through the other greens to get to it.

Bowling is a good activity since you can play your game at your leisure (so long as you're not there on League night!) and it has indoor toliets.

My fiance and I have had some fairly intense games of Monopoly and Risk and have played all sorts of card games. These can be fun and regularly scheduled and can invovle home-cooked food or none at all. If you have the ability to pool two computers together, you can play games on them and match each other or team up on them. My fiance and I do this sometimes with one of our medieval war games.

When Stuart and I took our vacation last year, we only ate one meal out a day--supper. We packed our own lunch and breakfast and this went a long ways towards helping out my poor guts. Fast food is rarely easy on you, and even restaurant food can be too fatty/greasy/fried/junkie to be good for you either. If there are things he knows he can eat with relative safety, then you should try packing meals when you go out. This is a lot cheaper too!

Stuart and I also do medieval reenacting together. I don't have a problem doing this because we almost always feed ourselves breakfast and lunch and supper, while usually a huge feast, is home-cooked and therefore has less fat, grease and sugar than meals out. And I'm with a great bunch of people, some of whom also have stomach problems, so I'm not embarrassed if, during the course of the day, I have to go to the toliet several times or abstain from food. We camp with a group of friends every year for a week down in MS at a big event and communal dinner can get interesting with all the people who can't eat this, that or the other because of reactions or allergies. Sometimes we even sit around and compare ailments! So it might be that you guys, if you have a common interest, can join some sort of hobby organization which won't be hard on his guts and can be something that you share together. I find my time reenacting for a weekend is a lot like a mini-vacation and my guts tend to behave better, not worse.

Lil's got a good list of no-nos for you. I would add that sugar alcohols are found in sugar-free and low-sugar products, so be on the lookout for those things. They absolutely KILL me! Tomatoes can bother some people, especially in large quantities, because they are acidic. Orange juice and lemons can be a bother too, for the same reason. Coffee is out because caffeine is generally bad for you and because it's acidic. This goes for non-caffieneted drinks as well. The carbonation in them can be espeically problematic for people with bloating. My main offenders are deep-fried things (I can handle homemade, skillet fried stuff, though), apples and apple juice, gravy and caffeine. I seem to be better off than most because I can handle milk, tomatoes and other things, although I have to be a bit moderate with the orange juice; no more than one glass a day. Oh, and alcohol, especially beers, seems to be bad for most everyone--although a few people have found that hard liquor can actually help calm their guts down. It will only take a drink or two to realize, the next day, which category you fall into.

Now might be a good time to get into sports, lol. Stuart and I like to sit around in the fall and listen to the Tennessee football games. If we had cable, we'd watch it, but such as it is, we listen on the radio. We tend to converse between plays and that's fun to do together even if we're not really "doing" anything in particular. After being with someone for a while, going and doing isn't as important as just being together and talking. I like an hour or two in bed reviewing the monarchies of England and discoursing on the lives of the average Medieval peasant better than I like going out and doing a lot of things! It helps, of course, that Stuart and I happen to be, generally speaking, lazy homebodies by nature, lol.

Sometimes something you eat can take a while to mess you up. Sometimes it happens immediately. I have gotten sick before even finishing a meal and sometimes I get sick several hours after finishing a meal. And things that you eat later in the day--supper and afterwards--a lot of times won't bother you until the next day. And maybe you won't even be bothered by them until you eat breakfast (meals seem to get me cranking). And it may be that I can eat a lot of fast food and meals out one day and be fine, but be sick the next. You have to pay the fiddler for the dances you dance, as the old saying goes. It's usually not too hard to figure out what's gotten to you since you can sometimes tell when you look in the toliet (!) or you will burp up the taste of it, or you know that it was a lot like other things that you eat that you can't tolerate (i.e. if ice cream (fatty) tends to bother you, then last night's alfredo sauce may be the culprit for today's diarrhea).

And here's something really weird for you: I can eat scrambled eggs with onions, bell peppers, sausage, bacon, cheese, etc. in them, but I can't eat an omlete with those exact same ingredients in it. I haven't been able to figure that one out. The only difference is scrambled eggs versus... scrambled eggs well-cooked? I don't know, but I can't eat omletes. But I can eat the scrambled eggs with all that stuff in them or even crustless quiches. So sometimes just the way you combine something up--even from ingredients that are okay--can bother you for some strange, unknown reason. Also, sometimes it is not the food but the preparation or the cook that makes the difference. I can eat Red Baron pizzas all the live-long day, but pizza out, like from CiCi's bothers me. I can eat my grandmother's fried chicken, but not KFCs--but I know about that; she doesn't deep fry hers. But I can also tolerate Chick-Fil-A's chicken but no one else's, but I think that's because they use peanut oil instead of partially-hydrogenated axle grease or whatever nasty stuff they're using nowadays.

So you have to experiment some to see what it is you can and cannot tolerate. Sometimes you won't even know why you can't have it, just that you can't. And sometimes it depends on if you're having a good spell or not. If you're having a good spell, you might be able to tolerate an offender. But if you are having a bad run of it, not only will your offenders set you off, but it may be that everything you eat, even if it's never bothered you before, will set you off. I've had days where I just know I'm going to be sick as soon as I eat, regardless. And I'll go ahead and eat a pizza or Mexican or something anyways. And my fiance will ask me if I shouldn't eat something milder if my stomach's bothering me, but I tell him that today it doesn't matter--I'm going to be sick regardless, so I'd rather enjoy some pizza in the meantime than plain white rice. If I'm going to pay for it, then it might as well be worth buying!

A good thing to do when you make plans to go somewhere is just to plan on going to such-and-such place today. Don't set a time or plan to do more than one thing. Then, he can have time to get up, get his system in order, then you can go out. And once you are done there, if he still feels good, THEN you can go somewhere else or do something else. I know it's hard for a planning-type person to be flexible, but you just always have to plan around the guts. Sometimes just having an extra hour at home can be enough time for the imodium or whatever to get kicked in and everything get calmed down so you're ready to go. It's worse to leave home with the guts messed up than to delay departure and get them settled down. They don't like to settle down while you're on the move, I have found.

Now I don't know what to think...

My boyfriend went to his gastroenterologist yesterday to get the results of the biopsy tests they had takend when they did the colonoscopy and the endoscopy. Apparently they did the food allergy test with these biopsies as well as testing for parasites. No known food allergies. Nothing.

So my boyfriend tells the dr - look, I am 100% positive that I have IBS. He started telling him about all the research he and I have been doing and how the symptoms are EXACTLY what everyone describes here - to the tee! And the dr. says - trust me you don't have IBS. My boyfriend kept pushing him at least 4 or 5 times but the dr was really adamant. He said that he has dealt with IBS patients for many many years and at least 50% of his patients are dealing with IBS (we live in NYC area). He is very compassionate about his patients and is very highly recommended - really one of the best in the city - and he really thinks it is a parasite. My boyfriend is in the Coast Guard and spent a lot of time in central and south america - so it's really very possible that it is a parasite. In fact - we had expected the first two sets of blood and stool tests to come back saying that, but when they didn't AND the colonoscopy and endoscopy showed nothing - we were certain that it must be IBS.

I don't know what to do anymore. The dr wants to put him on antibiotics now and send him to the lab for more blood and stool tests to be done directly at the lab and not be shipped there for hopefully better results. And supposedly he'll test for at least 15 different types of known parasites.

I don't know - I mean, from the horror stories I've read about some doctors really not caring, or saying it's all in your head, or putting it down to stress only, I have to admit that our dr really seems to know what he's talking about. I asked him once if he felt that my boyfriend's stressful Coast Guard job could be contributing and he said that my boyfriend is a really calm person and doesn't get stressed easily (very true) and that he's done this for a really long time and knows a lot of people and he really didn't feel that was it. He keeps telling us that he knows how frustrating it is, but to be patient with him and that he will find this parasite - or whatever it is - but he is almost positive it is not IBS. He even pulled my boyfriend aside after the appointment when he was leaving and spent another 15 - 20 minutes with him trying to convince him to trust him, that he really knows IBS intimately and that my boyfriend doesn't have it.

I don't know what to think or feel anymore. I feel totally depressed by this. I know it should be good news in a way - maybe there's a glimmer of hope that it's not IBS and that there could be an end to his suffering - but I feel like we could also go through a million more tests and still in the end find nothing and therefore be back to IBS. You know - you try and prepare yourself for what could be happening - and especially try to prepare yourself for dealing with it for life and now I don't know what to do. Sorry - I just feel really down about it and can't figure it out.

Post Edited (caladon) : 7/14/2006 8:02:51 AM (GMT-6)

Calodon,   Sounds like he has a great doctor..   I have had IBS for 10 years and can barely leave the house...   Believe me you don't want it to be IBS..  IBS is very hard to treat..  Matter of fact there is no cure...  I used to wish for a parasite so I could at least have a dx...  You are so supportive of him I commend you..  I need to have my husband read your posts!!!  It is really hard on the people that have to deal with us IBS'ers...  I do understand..  But I always say for better or worse in sickness and in health...  There are so many people way sicker than me...  Keep us updated!!!!  Take care...