Life experience with long term Crohn’s Disease

Hello Lmills,

What a great post! I, too, wonder much the same as you do. I'm 56 and have been diagnosed since 2002. But have had symptoms all my life that I can remember.

From my own experience: I had found that I could control my CD pretty much with diet. No particular one, mind you. Just healthier eating all around and watching the sugar, wheat, dairy, etc...much like many others here do. Every flare I have had I can trace it back to stress plus blowing my diet over the course of a couple weeks. I think I'm finally convinced that I can't eat like normal people anymore. Plus I ditch the drugs as often as possible and probably shouldn't. But I don't like masking symptoms. I want to know what's happening with my body...and nothing tells you better than symptoms....painful as they may be. I do take meds when I'm in a flair in order to help bring it under control and to keep me from killing myself and others. LOL!

When I read of people doing the various diets, I do wonder what was the tipping factor for those diets not to work (other than what works for one may not for another). Was the diet followed strictly...with a can of Coke added here and there? Was the diet not followed long enough? And how long is long enough? A month? Several? I really can't speak for others. But with me, any time I try something new I know I have to give it at least two months before I can say it works or it doesn't.

I do feel there is hope. I have a nutritionist who works with me...and I am not an easy client. My nutritionist has crohn's herself and has been in remission for going on 8 years now, through diet and healthy honing of her emotional and spiritual values. So, when I'm not being a jerk and blowing my diet and emotions, I do well with her recommendations.

We talk so much about the physical aspects of our condition and what we can do for our bodies. However, we also need to take into account our emotional and spiritual health as well. I'm convinced that diet alone isn't going to be the answer if stinking thinking consumes our mental and spiritual capacities. It all works together. I know that one from experience. Anyway, these are my thoughts. Thank you for your post.

Not being able to eat like normal people anymore...I think that has been one of the most difficult aspects of this!! To know that you can never order a pizza or eat homemade lasagna or just stuff your face during the holidays with all those homebaked sweets. Food has always been such a great comfort to me, and I absolutely love to cook so this has not been easy to cope with as far as diet is concerned...

But I wonder the same concerning what your third paragraph says Squattie. When things got bad again was it because of mistake here or there? A "well, just one won't hurt" that turned into a nice week or two long hospital stay? I really wonder...

I have to agree that stress must have been a(not THE mind you) catalyst in all of this. I really thought I just had ulcers at the beginning...losing mucus in the stool and horrible stomach aches. No blood loss, just very acidic mucus, fatigue, and stomach pain; all symptoms that would be there a day or two and then disappear for weeks only to return full force with all of the lovely Crohn's symptoms and diagnosis. What a whirlwind year..I told myself 2008 would be different. I just didn't expect it to be like this hah...

Great! I just lost a whole reply. Dang, and it was a good one.

Anyway, My flares have always been triggered by lousy eating habits and stress...usually hand in hand. This last flare for me was due to losing a job, starting a new one, my mom losing her job, trying to make ends meet, my sister coming to visit the same weekend that I had met a nice guy (hadn't seem my sister in over 15 years). I was going through a whole life change. In doing so, I indulged in barbecue ribs, pizza, hamburgers, hot dogs, lots of chocolate, ice cream, sweet drinks, barbecue chicken....and all kinds of just plain crap. I wasn't surprised that I flared. All of this happened within two weeks.

Normally I eat lots of veggies, nuts, apples, plain lean meats and leave out sugars, wheat, yeasty things, dairy and soy. I take supplements, probiotics, fish oils and digestive enzymes and feel pretty good. But when I blow it, I do blow it in a spectacular way. I know better and do it anyway. Then when I feel lousy I think lousy thoughts. Ya know?

 

       As one of the old timers here & especially with this DD ( nearing 20 years now of purgatory) I can honestly tell you, diets don't work for me. Aside from avoiding foods that cause strong & violent reactions, that is. Avoid the stuff that makes you miserable. In my case, no ryhme or reason has ever been apparent with old Mr. Crohns.

      MY experience, your mileage may differ!

      Sincerely,

    Matthew

One thing you have to realize is that researchers have discovered a cluster of 9 different genes that contribute to the development of IBD and define the severity and behaviour of the disease over time, although I strongly believe that not just for the disease, but for overall health it is a wiser choice not to eat processed foods, fast foods, animal fats and caffiene, but of course that won't guarantee how your genes play out when it comes to IBD, it is still always wiser to take the best care of your overall health in the hopes that the disease might have somewhat less of an impact on you.

:)

I have only blood in stools and sometimes on tissue and mild diarrhoea - maybe 4 times a day. Sometimes my stools seem normal too. So I have mildish Crohn's too and the only thing that effects me is the mental issue of accepting I am diseased. I am also trying natural meds and see how I go with that. I think that it is 100% stress related, I really do. I don't know anyone with IBD that doesn't have stress or ansiety issues. So we need to eat well, live well and as somebody sais earlier, don't worry about tomorrow.

All of your posts have been AMAZING so far. Please, keep them coming...

I realize that all of us are different, but in everything I believe there is also some common denominator no matter how small it may be. Stress for example(though I realize this one is definitely NOT small) is one factor that exacerbates anyone's illness to some degree. Or highly volatile foods hah..

I think that what is most encouraging so far is that many of you have been able to keep things relatively stable by keeping a close eye on diet and exercise though I DO realize that this does not mean everything. All the same, it's comforting. I myself cheated yesterday and tried eating really sharp cheddar cheese. I don't feel ill at all so perhaps I tolerate it, but I have more blood in my stool which has stopped having any form other than particles. It's confusing sometimes even for little things like that because there was blood earlier that morning BEFORE I had eaten it....we'll see later today when I try it again.

As for my own Crohn's experience these past months, I was experiencing the usual symptoms: blood loss, fatigue, no appetite and/or rather inability to eat or drink, sleeping 20 hours a day, and so on. I did the whole colonoscopy/endoscopy procedures and was sent home with asacol(six a day) and prednisone(40 mg a day). I started taking them the next morning and felt completely different that very day. First thing I did? I went to Wasabi and had sushi(probably my first mistake). It was the first time I had been able to walk outside in so long, and I was so happy I really nearly cried. Around this time--Later May-- I moved out of a really horrible apartment situation into a better place with my boyfriend(who I have to note has been exceptional throughout all of this. I don't know what I would do without him!). I used the new energy the medicine, or the steroids more specifically, gave me to fix every room in my apartment. Probably another mistake since I believe I overexerted myself during this period, and I believe it did harm my body lifting some of the things that I did. I also ate more unhealthy foods because I believed I was okay with my little understanding of how this disease works--brownies, hamburgers several nights a week(the meat had gristle and I LOVE onions), chicken alfredo with extra cream sauce, and so on. I really do love to cook...I thought things were normal because I felt great AND my stools were NORMAL and solid. I didn't even feel any pain anymore.

Of course things started getting worse as I weaned off of the prednisone. Blood starting showing up again, my stool got looser, I was less tolerant to a lot of foods I had been eating, and then I got pregnant. Everything went to hell in a hand basket after that. I didn't know I was until about a month in a half in, but symptoms were definitely getting worse as far as Crohn's was concerned: stomach pain, diarrhea, and so on. Of course the pregnancy was not planned, and I had intended to abort, but I spoke with my mother in the end and it was agreed that if I would carry the child she would take it as her own. She wanted a grandchild so badly..
Things went O-K for a little while, but I started noticing some spotting. I went to my gynecologist and he said nothing seemed abnormal but just keep an eye on things and call immediately if anything serious happens. Hah.
That night, and no I didn't bleed anymore(on the outside anyway), I experienced some of the worst pain in my knees and lower back I have ever felt. Like someone was filling them with fluid. I've noticed that my knees do this now when inflammation gets really bad or when I lose a lot of blood. I tried to sleep it away for a little while but to no avail. I ended up crying out in pain(I'm a wimp so sue me!) prompting my boyfriend and sister who was staying with us at the time to come check in on me. If not for them I would, without a doubt, be dead. They convinced me to get to the ER and I did where I found out I had a fever of 103, I was bleeding out and in shock, and I was losing my baby because the pregnancy was ectopic--something my gyn doctor later on said could very well be attributed to the Crohn's inflammation WHICH my GI doctor said could very well have been due to the pregnancy. How lovely.

They performed emergency surgery to correct the situation and I spent the next two weeks getting better. Which is now sort of a joke because a week after being semi-recovered my Crohn's symptoms got worse again and I ended up in the hospital for another week--severe blood loss multiple times day and night, weighed 98 pounds, couldn't eat for nearly two weeks, could barely get water down, etc. etc. etc. But you know I made so many diet mistakes in that time after still being in a moderate flare( thought I was okay after the pregnancy situation was resolved). I ate reese's pieces, twizzlers, frosted flakes with whole milk, white pizza with spinach, chicken on roasted eggplant with creamed havarti cheese on top, salad with tons of blue cheese, and so on. No wonder things got worse. In fact, after the chicken and salad I swear I spent the entire night with the worst pain I have ever felt in my life. I wanted to kill myself so badly in all seriousness. I wished to simply not exist anymore..I cannot stress enough how excruciatingly painful those eight hours were.

Anyway, here I am now on all of the medications listed in my signature. Things have drastically improved though I still have diarrhea, stomach pain on and off throughout the day sometimes accompanied by nausea, and lovely red bowls of blood on and off(I'm still trying to figure out what is triggering them. It seems random..).

I agree that stress has also been such a great part to play in why things have been bad when they were bad. I've spent the entire summer living down to pennies just to get by with bills and the ability to buy ANY food sometimes. Nothing quite like living off of ramen for a few days until some extra money comes in. It was my intention to get a job, but you can see how that plan went down really quickly. Not sure if anyone would appreciate paying me to sit in the bathroom crying all day. Fortunately, I was able to pull some extra in for babysitting my wonderful younger sisters, and my father is kind enough to continue sending child support directly to me monthly(enough to pay half my share of the rent at least you know?). And then of course there are always issues that pop up in the family or boyfriend's family(they have not been, shall we say...the best when it's come to him and I together after I was diagnosed with Crohn's).

That's all I can remember for now. I just woke up about an hour ago, and I am not a morning person!!

A couple of questions though!

I made it out to the grocery store yesterday, a very big accomplishment since I have barely been able to walk after all of this, and I noticed I felt a little better, albeit tired, after returning home. I believe this mild exercise helped things feel better overall. Has that been anyone else's experience?

Also, is there ever any food or liquid that you can rely on no matter what? Water excluded of course. For myself, ensure shakes and unsalted saltine crackers have been lifesavers when I just can't get anything else down. Although the ensure shakes might literally be lifesavers because they were all I could get down during this last really bad flare period prior to getting to the ER again. I have never been so emaciated before. I find it funny because I used to starve myself just to stay at 105. All I wanted was to be too skinny because I thought that it would make me beautiful and happy. It really is a case of ''be careful what you wish for.''

This disease has taken so much, but I have to say that the appreciation it's given me for the things I can and do have is something I could never trade away. It feels like it lifted a veil from my eyes, and I can see the world for what it truly is. Sometimes terrifyingly ugly, but always, in the end, I find the most exquisite picture imaginable in spite of it all.

A 20 year remission? How did you achieve that? Do you think you would have had a longer one had you stayed on some sort medication?? I would love to be able to achieve that with the proper steps...though I realize it's pure question considering how individual this disease is. What kind of dairy do you tolerate? And what kind of vegetables can you eat? I've been wondering about the canned green beans and peas in my cupboard..I'll try them anyway to see how it goes but just curious about your case.

Also, I am wondering about the red meat...I feel like I can tolerate it, but I am wondering the effects it has on those of you who have not been able to eat it?

I have had CD for 30 yrs. I have had 2 resections, neither one was an emergency. The last one was in '85. Surgery should ALWAYS be a last resort, because there will be scar tissue that will eventually cause problems. I currently have a stricture (narrowing) from scar tissue. The area was as small as a very thing pen. My GI did a balloon dilatation a month ago. If that doesn't work, I may have to have another surgery.

The MOST important thing in managing CD is keeping a food/symptom diary. You won't have to do this your whole life. Just keep it long enough to understand what foods cause you to flare. In my case, I must take Azathioprine (imuran) to maintain my CD with as few flares as possible. This however MUST coincide with watching what I eat. I have a very strict diet. I cannot eat most veggies, most fruits, nuts, spicy & greasy foods. I eat mostly white foods (i.e white potates, white rice, white bread, pasta, white meat chicken, etc). While I can slide in some variety once in a while, I ahve to be very careful.

It is essential to learn to read your body. If you are sensitive to signals, you will know what you can tolerate. Sometimes if I'm eating somethign wrong, I will feel a liittle spasm, or flutter in my intestines. When I do, I stop right there. I am one of the ones who can mostly keep the flares down by diet and maintanence drugs. Not always, but mostly.

Watch the alcohol until you know if you can tolerate it. Smoking makes CD worse too. I can eat red meat. I can't eat most pork, only crisp bacon & rarely ham in an omelette or something. White Chicken & occasionally white turkey.

This is a disease of figuring out what you can tolerate and what you can't.

The 20 year remission was just pure and simple LUCK!! I think maybe I could have extended a little longer if I had taken some kind of maintenance med. And...........knew to pay better attention to my diet too.

I do want to make a point here though, PB4 is allergic to most medications, but I do believe she is in the minority. Most of us can and should take some form of maintenance med. I am lucky that my Crohns is a milder form and I can use Asacol to keep my Crohns in check.

p.s. I have the stricturing type of Crohns.

I'm not really a long-timer, but I've had CD about 12 years (dx for less) and am in a 4 year remission. I know how you feel in the beginning-- like you can't do anything because you have this disease hanging over your head. It doesn't have to be like that. Like others have said, many or most people with this disease live pretty normal lives just with a few interruptions. You can get over these by staying on top of your meds/diet or whatever works for you.

I got through college and law school, have a great job and family and live pretty much untouched by this disease other than the pill popping and copays. You can't make your life decisions based on the what ifs of a flare. I haven't regretted a single thing I've tried to do even though a flare could have disrupted it (or did). My only regrets are the things I was scared away from doing b/c I feared this disease might make it harder. Other than doing something stupid (like eating a tub of popcorn for me because I have strictures), I can't predict if something will make me sick. I just avoid making those obviously risky choices, do my best, and live life as if I don't have this disease. If a flare pops up I deal with it, but most of the time I don't have to. I know now it doesn't seem like this is possible, but as you get things under control and see that you feel well for a week, then a month, or a year, you'll realize that you can roll along with it and not let the disease run your life.

Good luck.

Scary perhaps but also very educating and comforting. That's part of the reason I started it, not just for myself, but because I know that there a lot of people who are reading and benefiting from it.

All of your posts help more than you know! Keep them coming :)