Selfish? Stupid? Just not sick enough?

[chrisnsteph1022]

I see all this talk of alternative therapies, supplements, and especially diets. SCD, Maker's, gluten-free, etc. Major dietary changes. And all I can think is that it sounds like too much work. I love food. I put a lot of trust in my doctor and prescription medications. Am I just being stupid? Or maybe I haven't gotten sick *enough* or desperate enough to try something different? I've been pretty sick, but haven't had any surgeries, and I seem to respond fairly well to medications.

I'm on Cimzia and Apriso right now. I'm not in remission. I'm not NEAR as sick as I was at the beginning of the year, but I still get diarrhea 3-4 times a day, occasional cramping and nausea and some fatigue. I've wondered if gluten-free would help push me over the edge into remission, but then I think about all the food we have in the house and having to read labels all the time and miss out on dinners out and it's just so overwhelming. I never get past the initial thought stage. I just don't know if it's worth the effort, kwim? I'd rather put up with the little symptoms I'm having than go gluten-free. Maybe I'll change my tune when I'm hospitalized and facing surgery, but maybe not. I've always been one to look for the quick fix in any situation, and drugs/surgery are usually the answer for that.

It's ok to tell me I'm being stupid and naive. Does anyone else feel this way or am I alone?

PS, I also eat things I know will make my diarrhea worse the next day-mainly salads. I had one last night. And yep, it's worse today. But I just don't care. It's almost like I've given up trying to fight it and I've accepted I'll never be 'normal' again.

 

[ThanksP]

I think you'd do just about anything if you were sick enough. Hopefully you never get there though and can stay relatively healthy and never have to worry about it.

I have no other medication options so am looking into other therapies. For right now I'm not doing anything outrageous, just trying juice fasting for a few days...and then regular juicing from then on. I'd be willing to do anything though if it meant no surgeries, hospital stays, etc. Yep, I'd even eat worms lol

You are lucky, so don't feel bad. Just take care of yourself!

 

[HeatherMN]

You are not stupid or selfish, I don't think. I have learned to live my life with the fact that I have this, I won't ever get rid of it, and I am not going to live my life chained to a bunch of rules and regulations that may or may not make me feel better. I barely have the time/energy/willpower to make normal meals for myself and my family, let alone having to martyr myself into making my own separate meals with different things cause I am "sick". Talk about making yourself conspicuous.
I eat and drink things once in a while I shouldn't. For the most part, I know what sets me off and try to avoid those things (McDonalds for one) But, this has made my life suck enough already without making it worse. So if I feel like enjoying something I know might not enjoy me back, I can take the consequences. That's what's worked for me for the last 10 years so...
I do take several supplements, vitamins, etc. that I hope will make a difference for me, but I take them knowing they are not a cure.

 

[Carrie]

I think I come from the same school of thought. Part of me is not willing to try "alternative" therapies because they are not necessarily backed by research and science (not the same way that drugs are tested), and so many seem like a massive hassle.

I've been quite sick for the past few months, and have been in hospital for the past two. While drug treatments are not going to treat my Crohn's at this point, and I am facing surgery as soon as I gain enough weight, I'm still not really willing to try any of the alternative therapies available. Maybe it's because I'm already too far gone at this point, though.

Also, like you, I enjoy food. And if I love it enough, I will eat it and suffer the consequences, if necessary. Luckily, when I'm not in a flare, I don't seem to have too many adverse reactions to food, so this isn't a big issue (or at least the increase in symptoms isn't enough to disrupt my day-to-day routine).

You're certainly not alone in your train of thought!

 

[chrisnsteph1022]

It's good to know I'm not alone. I agree with the part about it not being backed by research. All evidence is anecdotal and everyone seems to have different outcomes. Some swear by diet and go med-free, and I just can't wrap my head around that. There are drugs to treat this thing, might as well use them. Of course, there's concern about side effects and long-term use, but I guess I'm just willing to take that risk. I honestly think I'd be miserable mentally if I had to follow one of these diets.

 

[Cookie]

Very interesting thread. In all honesty, I used to feel very much the same way. When I finally got to a point where I was feeling awful everyday, I began to feel like maybe I was in a "not willing to help myself" kind of situation. Based on things I'd read, I figured I would give the gluten-free thing a try. I honestly did not expect it to make one bit of difference. I just wanted to be able to say, "Yeah, I tried that and it didn't work". But to my surprise it did. And the difference in just how much better I did feel made me realize just how awful I had been feeling for a long time.

I did not expect to stick with it. And of course it is difficult. And I cheat every now and then and know that I am going to pay the price. I just have to decide if it's worth it. Just like everyday that I stick to the diet I am deciding that the sacrifice is worth the results. I think everybody is different and you have to decide what is important to you. I know some people have tried to do different things with very little improvement and decided it's just not worth the effort. So in a nutshell, nobody can tell you what to do but you. I would never try and force any type of treatment on anybody. I may feel like I've been in their shoes, but I haven't. But I do not mind telling people what has worked for me because I think the more information we have, the better we are able to decide on how we should go about treating ourselves.

 

[AndiGirl]

I think you've just summed up how I have been feeling for years, Steph. I love to eat, and Crohn's has really ruined that for me. My birthday was three days ago, and what did i do? I ate Mexican food including the tortilla shells. I felt a little sore and bloated that night, but I was otherwise okay. I think I'm beginning to feel the consequences of my food choices today. I am cramping and feel nauseated. I never seem to learn, or I'm good for a while. Avoiding Mexican food, and berries is probably the hardest thing for me.

I know that I would feel better if I followed a strict diet and completely avoided the painful foods. It's very hard for me. I am beginning to understand a little of what alcoholics must feel; only my situation is with food. I sometimes feel powerless to its taste and appeal.

My grandfather who had a severe case of CD also loved food. He didn't know about his condition until the damage was already done, and there was a lot of damage. He did know that he had a touchy gut and stomach though. He continued to eat whatever he wanted, and he was a hearty eater too. He was a hardworking fisherman, so I know he could put away food. My father, who was his youngest son, worked along side him on the fishing boat. He claims that grandpa threw up several times a week. He always blamed it on something he ate. After getting sick, he would continue to fish and work. All of the uncontrolled inflammation and irritation caused him to lose his colon. He ended up with a colostomy bag.

Know about the possibilities and it does scare me a little, and I have improved some because feeling miserable from eating certain things, just isn't worth the pain. I wish that I could stay permanently motivated. Maybe there should be an ongoing thread about this topic.

 

[chrisnsteph1022]

I do avoid certain foods if I don't want to deal with the consequences. Today for lunch, I had nachos. I normally get jalapenos on them. But I passed on those today because I feel kinda crappy (haha) and don't want to compound it. However, I don't think certain foods will make the Crohn's worse-just the symptoms. My GI shares in that belief as well.

 

[Carrie]

Yeah, as a few people have stated in this thread already, I'm a firm believer that food does not cause flares; it just aggravates already inflamed bowel, or is just one of those foods that doesn't agree with me (because I'm pretty sure "normal" people get gas or diarrhoea from certain foods once in awhile). As such, I think drugs are important in obtaining/maintaining remission so that I can eat with abandon whenever possible.

Though I do have to admit I'd been put on a liquid diet for about a month during my hospitalisation to-date. There was medical reasoning behind it, though, which was to give my bowel some rest, and see if the high-calorie drinks would help me gain weight. Unfortunately, I didn't tolerate either liquid diet I tried, and have had to resort to intravenous feeding instead. At least now that I'm getting IV calories I can kind of eat what I can tolerate even if it does make me sick since I'm still getting the calories (though I'm only tolerate a certain threshold of punishment from my tummy, so it's not much!).

 

[DustyKat]

What a coincidence that I happened to be talking to Sarah about her "diet" yesterday. I know it is a little off topic to what you are referring to but you may find it interesting.

Sarah is in remission but has short bowel syndrome. She now follows a vegan diet and has very limited oils or fats, she has even narrowed it down to foods with less than 1.5 grams of vegetable fat per serving as being a safe food for her.

I asked her how she copes with such a limited diet and she said that although she misses many things only pooping once a day is so worth the effort and sacrifice.

I think in Sarah's case her finally having a degree of control in how she spends her day was the clincher. For the first 4 years post op she planned her eating around her day and that was very difficult because she simply wouldn't eat when she was away from the house. Not a great solution in any way, shape or form when you are at school all day, then to an after school job and then when you do finally eat you spend most of the night on the toilet.

I don't think diet causes Crohns nor do I believe it cures it, what I do think though is that it definitely plays a role in alleviating symptoms.

Dusty. xxx

 

[David]

You're not selfish and you're not stupid.

Crohn's and IBD in general are diseases that are incredibly complex and trying to find a single variable that leads to flares or remission is far too simplistic. Considering we have different blood types, different gut flora types, different genetics, and likely other differentiating factors science has yet to even determine, I feel the most important thing to do is explore what is best for you. You can pick and choose ideas others present, but do so with hopeful skepticism and a scientific mind.

I've read countless times that science has decided that food does not lead to flares or remission. However, I have been unable to find any of the scientific studies that found this result. Can anyone please link them to me as I'd be very interested in how they conducted the study. I say this because I have a gut feeling (hurrrrr) that food (or a lack of certain foods) IS a contributing factor for some people. I also know just how terrible a lot of the "scientific" research out there is. Have any of you pondered how they would even test if food leads to flareups? What do they do, shove a can of corn down someone's throat who is in remission for two weeks and if they don't flare up in 10 days, they decide corn doesn't lead to flareups? How do we know the schedule our guts even operate on? Maybe it takes three months of regularly eating V food that contains W preservative that unknowingly inhibits the X organ of people with Y blood type from producing Z enzyme which leads to inflammation when the person's cortisol level reaches A and norepinephrine level reaches B for C time frame due to a prolonged stressful situation as that enzyme would normally protect the gut from the effects of stress.

It's not my place to judge. And I don't feel that you should feel guilty for the choices you make. I just feel it's a good idea to keep an open mind and occasionally take a step back and evaluate what is best for us at that moment in time as we, and our disease, continues to evolve.

 

[Misty-Eyed]

Oh I completely agree that restricting certain food groups helps some people but definitely not all. I was once put on a elemental (liquid) diet for months and months by some doctor who was convinced that diet was a contributing factor to crohn's. You know what? The only difference that being on that diet made was that instead of being severely ill, I was now severely ill, not allowed to eat any food and as a result got clinically depressed. Not being allowed to eat anything, yet alone a slice of cake on your 12th birthday is no fun!

It did make me love food all the more though and I'm glad that for some people the elemental diet really works. The only reason that I now yet a low fibre diet is because of my strictures.

So I say that your mental well-being is as important as your physical. Don't cut things out of your diet if it's going to make it hard to cope mentally.

 

[Cookie]

You're not selfish and you're not stupid.

Crohn's and IBD in general are diseases that are incredibly complex and trying to find a single variable that leads to flares or remission is far too simplistic. Considering we have different blood types, different gut flora types, different genetics, and likely other differentiating factors science has yet to even determine, I feel the most important thing to do is explore what is best for you. You can pick and choose ideas others present, but do so with hopeful skepticism and a scientific mind.

It's not my place to judge. And I don't feel that you should feel guilty for the choices you make. I just feel it's a good idea to keep an open mind and occasionally take a step back and evaluate what is best for us at that moment in time as we, and our disease, continues to evolve.

Well said David.