Question to every member who has had this long term(and anyone else who wants to share)

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LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/17/2008 4:34 PM (GMT -7)   
I have been thinking night and day about how the rest of my life may or may not turn out after being diagnosed with this disease in May of this year. You know, the usual like getting through college, finding a job, a good company to work for that will have moderately decent insurance, and just making it through as healthy as I possibly can.

I have been reading so many of your posts and stories for guidance about diet, exercise, avoiding surgery, etc. and the surgery and diet have especially occupied my thoughts because so often I read that it has been an emergency after...and that's what I wonder.

For those of you, throughout the years, who have had to go in for emergency surgery, was it all up to chance? Will it be that no matter how careful I am it's possible that eventually for no known reason I may have to worry about a horrible flare and/or some more sophisticated medical solution? The thought of not having any control in the end is so frightening. I can accept it and prepare for it of course. I have been trying to this past summer as it's been my first months accepting that I have a lifelong and, so far, very debilitating illness.

Also, I have been reading things like Elaine Gatschall's "Breaking the Vicious Cycle" or about diets to that effect, and I feel hopeful afterward about being able to control my life through the proper diet and rest/exercise. But then I read about so many people who have this disease and I take it without saying that they too were as careful as they could be and still ended up having to resort to more extreme means just to reach a state of normality(loosely used) again.

I just wanted to know from all of you who are more experienced in this disease what your experience overall has been and why you think you may be where you are..I realize many of us are on here because we need the support, and we need the support because of the severe effect this disease has had on our lives. In the case that things are so severe as they are now, I suppose I'm just really needing your experience and thoughts for guidance and comfort. I'm afraid but also hopeful, tired but not at all considering giving up.

I have to go back to school this Wednesday, my sophomore year at University of Tennessee, and my worst fear right now is that I know if I even make one mistake to send me back into a flare my semester is over. The problem with this is that my income comes from excess financial aid which I am not entitled to if I am not able to attend school. This money is all I have to pay for my medical bills, rent, food, gas, car/insurance payments, medication, and so on. I need the classes for mental stimulation and a goal to keep me going(I am determined to get my major in biochemistry and molecular biology), and I need the money to survive. My health depends so much on diet, exercise, and the ability to stay well enough just to walk to class(right now it's difficult just to get around my own apartment!!). I just wonder..is it all up to chance that I will stay well or is there some degree of control?

I would appreciate anyone who is willing to share their life experience from when they were diagnosed to what you did(college, career, leisure) and how life is now and why you feel it is that way...thank you in advance to all of you!!
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 8/17/2008 5:12 PM (GMT -7)   
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.
.....Squattie


CD_Fighter
New Member


Date Joined Aug 2008
Total Posts : 1
   Posted 8/17/2008 5:18 PM (GMT -7)   
Hello my friends, I hope all is well. I was just diagnosed with CD in july of 2008. And i've been sick for 6 years, from mouth to my bum.I was even put in a psychie hospital, the doctor thought it was stress that was causing my vomiting and bloody diarrhea {what a quack }.But anyhoo i have a fantastic gastro doc. now.

I've been plagued with the awful horseshoe abcess that needs a permanent drain, it's been building up for 6 months. And i really was'nt to frightened of this disease until now. I'm actually frightened to a pretty high degree, and having some anxiety over it on top of my anxiety disorder "OMG" it gets to be a bit much sometimes.

And now i am having my surgery done AUG. 18th 2008 for the abcess and drain to be placed in permenantly, and i ask you my friends if you have experienced the same thing i would like to hear your experience and maybe something positive that comes from this. And i ask for your prayers, for you all will be in mine.

God Bless, Kellie

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/17/2008 5:50 PM (GMT -7)   
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...
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/17/2008 6:00 PM (GMT -7)   
I've now had crohn's for 17 yrs straight with no full remission...most of my yrs have been severe-moderate, I was only ever able to take prednisone but even it has lost it's effectivness for me, I've always either been allergic or non-responsive to traditional oral RX...my CD when I first got sick was in my small intestine, colon, rectom and anus, all at one time for the first couple of yrs (that was defnintely my severe times, with only some help from prednisone).

After the first couple of yrs, it cleared up in my small intestine, but since has stayed constant in my colon and anus (perianal crohn's skin tags), comes and goes in the rectom.

about 5 yrs ago I put my huge skeptisism about natruals aside and it was the best thing I could have done, along with taking natural anti-inflammatories such as bee propolis, chamomile tea, omegas 3-6-9 and also adding probiotics, vitamins A and C-calcium ascorbate, my GI also suggested I add fibre supplements to my regime and it's the best advice I've gotten from a GI (I've had 4 in all my 17 yrs of having this DD).

No more bleeding, mucus or D, I still have frequency but I only 5X/day compared to 30+ like I did for most of my yrs...no more lower back pain either (which was the only pain I got besides the anal pain from the skin tags which were mistaken as hemherroides just before I got DX).

I also altered my diet to help bring me down to an average of 5X/day, I also still deal with urgency which is another reason why I'm not in full remission to date, alot of this may have to do with the un-necessary surgery I had on my flaring skin tags when they thought it was hemmies, they basically banded them during the tags flaring and it's kept them in a flare since and I've been told they will remain that way.

I also exercise regularly with cardio and weights, has also had a positive impact with my BM's and my mind as well...not to mention the rest of my body...it's pretty rare for a chronie to be flaring for 17 yrs straight to not have osteo/rhuematoid issues, and I thankfully don't.

Everyone's different and what works for some doesn't work for all but one things for sure, we all need to be on probiotics since we tend to have bacterial over-growth issues that exacerbate our symptoms, and for those that do not have stricturing CD, a fibre supplement daily and indefinitely (along with the probiotics as well) is key.

I drink ONLY water and chamomile tea, only on rare occassion do I have 100% pure juice with no sugars or preservatives added.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 8/17/2008 6:30 PM (GMT -7)   
c
.....Squattie


Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 8/17/2008 6:38 PM (GMT -7)   
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?
.....Squattie


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 8/17/2008 6:52 PM (GMT -7)   
I had a bad flare 8 years ago when it took the doctors 3 months to figure out what was wrong with me. But I have had symptoms
year prior to that. I have CD very very mild compared to a lot of people on here so I can control mine most of the time.
I went about 6 1/2 years pretty much drug free. When I have small issues here and then my GI doc puts me on Cipro for
a few weeks and it helps settle things down. I went through a divorce, my mom passing away, college, etc with it and did
pretty good through it all. The end of April this year I went into another bad flare for me and have been trying to get it
back under control. I'm trying to get off the prednisone. I'm on Methotrexate and Cipro for now as well. I haven't had to
have any surgeries yet but I do worry that some day I may have to. I try not to worry about it though as its in the future and
we can't predict what will happen in the future. I'll deal with it if/when that times comes. I just try to focus on now. I watch
what I eat and try to just take the best care I can for me.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 10mg this week
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
                           Cipro
No Surgeries
 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 8/17/2008 6:59 PM (GMT -7)   
 
 
       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! turn
 
      Sincerely,
    Matthew

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 8/17/2008 7:04 PM (GMT -7)   
i dont have time to write a book, so imho, if you'd like to talk, email at my personal email and we can chit chat over the phone. i can totally relate to everything you had to say. some are still legitimate fears of mine (not college anymore - i some how finished that). i was diagnosed at 17 years old - had to go through my senior year of high school on high doses of prednisone trying to figure out what was going on and then went to college. that was very difficult. got a bs and a ms. like i said, it would take me the equivalent of writing a book to possibly help put things in perspective for you and perhaps assuage some of your fears and help get your head on straight and wrapped around this disease with all the unknown and uncertainty.

best advice i can give you right now:
dont worry about tomorrow. it may never come. disease or no, life will always be different than what you imagined or wanted for yourself. take advantage of today cos you may be feeling miserable tomorrow. and if you're feeling miserable today, there are always others way worse off than you are. you will get better eventually with time as the flare subsides, so tomorrow gives you something to look forward to. there is always hope. take this time to mature and grow and discover more of who you are. set aside some time for introspection - figure out what matters most to you and pursue that as it will make your life much more enjoyable and will make you happy cos money wont. you'll come out a stronger, emotionally healthier person than your peers and it will take them quite a few years of playing catch up to get to where you are. trust me on this.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/17/2008 9:16 PM (GMT -7)   
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.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/18/2008 4:50 AM (GMT -7)   
Well I am past the 40 year mark . . . first symptoms at 19, diagnosis after a GI bleed in my early 30s, 61 now. No surgeries or major complications, though I have what is defined as a relatievly mild case. The secret to me has been to realize that every case and every individual is different, and that whatever I hear or read about any else's experience will not necessarily apply to me. Bottom line, most people with Crohns, most of the time, can lead relatively normal lives if they adhere to the medication and diet regimen that is right for them and address any complications aggressively in partnership with a qualified gastroenterologist they trust. There are going to be good and lousy days or weeks, and there are simply some things we won't be able to do . .  so we do other things. The disease does NOT have to own you.

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 8/18/2008 5:20 AM (GMT -7)   
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.

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis with no Granuloma
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/18/2008 5:52 AM (GMT -7)   
Hello CD Fighter! Welcome to the forum!! I really hope your surgery brings relief! I've had several abscesses but not like yours. Mine were not fun at all. Healing took many weeks -- my colorectal surgeon said healing is slow down there. I suggest you check out past posts for suggestions about post-care. Most of all, be patient, take it easy, and give it lots of time to heal. Let us know how you are doing!!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  No other symptoms.
Allergic to Remicade and Humira.  Currently on 6MP.
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 6:00 AM (GMT -7)   
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.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/18/2008 6:30 AM (GMT -7)   
Okay I haved lived with this stinkin' disease for almost 33 years. The best advice I can give is you should ALWAYS take some kind of maintainence medication and should find a diet that works for "you". I once enjoyed a 20 year remission med free, but that ended with a emergency resection. OUCH!! So learning from my hard earned lesson, I always recommend folks to always take some kind of maintainence med. I don't personally believe in these special diets some folks swear by. While they may work great for them, they are not the cat's meow for everyone. That being said, I personally live on a low residue diet. I eat no red meat, little to no dairy, all veggies must be cooked to mush. Like MikeB said, I have a milder form of Crohns also, but still occasionally have a bad day(s) or week. These to me are not flares, just bad day(s) or week, usually brought on by some stressor or eating the wrong thing. But I have lived a relatively normal life. I have been at the same job for almost 19 years, married twice, have 3 grown daughters and 5 grandbabies. So Crohns does not control my life, but it puts a damper on it once in awhile. Hope that helps.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 6:40 AM (GMT -7)   
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?
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/18/2008 9:45 AM (GMT -7)   
Remember, not all of us can take oral RX for this crappy disease, I'm either allergic or non-responsive myself, but luckily I've continued to have some luck with the naturals that I take daily (for about the last 5 yrs).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/18/2008 10:12 AM (GMT -7)   
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.
150mg Azathioprine
Lomotil
Iron
Nexium 2/day
Fentanyl patch
Oxycodone
Baclofin
 
Crohn's, Fibromyalgia, Several bad discs, bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Stricture
2 resections
 
Stephanie
 
When I am weak, then am I strong


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/18/2008 10:48 AM (GMT -7)   
I was diagnosed at 16 and I'm going to be 36 in a few months. I was able to finish college, get my bachelors, and even go do a year and a half of missionary work for my church (in Canada - no 3rd world countries for me! LOL). I'm pregnant with my 3rd baby and I would say I'm pretty much doing what I've ever wanted to - as far as accomplishing my life goals. Sure there are days where I can't do what I want because I feel like crap, but overall, my life has been good.

Here's what I think - you have to know yourself and you have to find a good GI will help you LIVE your life by medically facilitating what you need. As you get to know yourself and the disease you will be able to manage your life to a great degree. Granted, there will be times where you can't control anything and you will be at the mercy of the illness. As long as you can keep your chin up and take it all in stride (good support system, good doc, good meds/diet/etc) you can get through anything. At 20 years old I never imagined all that my life would bring, but I have been through some hair-raising experiences and still survived it. You can too. You just have to tell yourself that you can do it. And on the days when you don't have it in you to give yourself the pep talk, you need someone who can give it to you.

As I read your post one thing kind of stood out - you seem like you're stressing yourself out! :) I'm not picking on you and I totally get where you're coming from when you look at the future and wonder out loud, but if you can learn to minimize stress in whatever ways possible, you will help yourself out a lot. BTW, I LOVE the SCD and have gone on the diet a few times. It's been really successful for me. I just don't stay on it forever because--- I'm lazy, my meds finally work, various reasons. But if you're interested in trying it, I say 30 days can't hurt and you'll know if it helps or not. I think it's awesome that you're going back to school, but don't put the pressure on yourself that if you "make even one mistake" it's all over. It's not that cut and dry. You know how sick you can get, but you have to give yourself more leeway. It's amazing what a whammy we can put on ourselves just mentally. Keep your chin up! I think you'll do just GREAT!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/18/2008 11:11 AM (GMT -7)   
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.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


mj8dokken
Regular Member


Date Joined Dec 2006
Total Posts : 149
   Posted 8/18/2008 12:09 PM (GMT -7)   

I myself am trying to figure out this disease having been diagnosed only 2 years ago. I've had only two major flares (the first led to the diagnosis) and when I think back, the whole week or two before everything went to H***, I ate more fast food than usual, and I had also been drinking coffee on a regular basis (which I usually don't do). nono

When I am feeling well, I can tolerate anything. When I am sick, my "go to" foods are mac n cheese, jello, and oatmeal. I can't tolerate anything other than water as far as liquids go when I am ill, but like I said, when I am well I can tolerate anything (except coffee and too much fast food apparently.) Good luck on figuring out how this disease affects you. I have found this website to be extremely helpful. Even though I don't post very often, just reading what others go through helps me understand what I am going through that much more. It's also great to know you're not alone, and it's nice to hear real people talk about it not just doctors.

Good luck and keep us posted!


Bad flare May '06 resulted in CD diagnosis-symptoms for 10 yrs prior.
Asacol: 2400 mg/day
6mp: 100mg/day
Prednisone: 10 mg/day
Entocort: 9mg/day


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 8/18/2008 12:34 PM (GMT -7)   
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.
Currently in remission!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 8/18/2008 12:46 PM (GMT -7)   
This is a scary thread for those of us new to the disease or those of us who don't have it severre.

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis with no Granuloma
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 12:54 PM (GMT -7)   
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 :)
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.

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