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NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8568
   Posted 4/20/2010 12:00 PM (GMT -7)   
Am I the only person with Crohn's who feels considerably better for not eating? Anything, I don't just mean avoiding specific foods, I mean everything. Today it's 8pm, I've had not a single bite to eat all day and I feel great. And considering I had a colonoscopy yesterday, not like I ate a lot the past two days either.

I may or may not be in danger of developing an eating disorder, and I don't care. I've spent years eating "normally" and "heathily" in an attempt to get the nutrients I need and what good has it done me? None. I also hold little hope for this disease ever going away or into remission for me.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 4/20/2010 12:11 PM (GMT -7)   
Of COURSE I feel better not eating!! It's crazy becuase I think a lot of us have somehow learned to function on little-to-no-food for days and weeks on end. I have a very physical job and I honestly don't know how I've made it through the last year with a horrible flare and many weeks on a liquid diet...but you just learn to adapt I guess!
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on:7.5 mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Flomax (for urinary retention). 


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 4/20/2010 12:47 PM (GMT -7)   
It used to be that way for me, but luckily, not any more.
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8568
   Posted 4/20/2010 12:52 PM (GMT -7)   
I was pretty stubborn for years. Always maintained I could eat anything I wanted, ate large piles of food if I went out to a restaurant, and so on. Have always liked food and had an interest in it. But just recently, something's snapped - I can't/won't do it anymore.

But since everything bothers me, even small amounts of food, the logical conclusion is to just basically not eat. I know I have to eat eventually or starve to death, but by god I can get by on as minimal an amount as possible.

Never quite understood what a liquid diet consisted of. You're not talking about an elemental diet, are you? Or frijj chocolate fudge brownie milkshakes either, I presume? <_<

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 4/20/2010 3:03 PM (GMT -7)   
I have noticed that I feel better/sleep better if I skip supper sometimes. However, I usually have eaten lunch and had plenty of fluids to drink. You need to have nourishment or you will get dehydrated in a few days. I think it is just part of the disease. If we didn't have inflammation in our GI tract, food wouldn't bother us.
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel


Pmkrier
Regular Member


Date Joined Apr 2010
Total Posts : 69
   Posted 4/20/2010 3:51 PM (GMT -7)   
If I don't eat my stomach will start to hurt. I have to eat and I eat lots :-/
I love food... even if it hurts me sometimes.
Even after I eat something run to the bathroom I'll be hungry again!!! It feels like my body cleaned me out sometimes so I'll be hungry afterwards.
Crohn's Disease. Diagnosed in 1997 at the age of 10.
Currently moving onto the "big doctors". AKA: Transferring out of Children's Hospital of Wisconsin.
Doing lots of testing now that I have a new doctor:
Just started B-12 injections ( monthly)
Currently on: Purienithol (6MP), Calcium, and Multi-Vitamin
Was on: Prednisone, Remicade ( Allergic Reaction 2nd time around)


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8568
   Posted 4/20/2010 7:19 PM (GMT -7)   
I don't get it.

I can hardly be the only person with inflammed, ulcerated, cracked intestines and yet apparently I'm the only one (virtually) with issues with eating. It took me years to get to this state of mind; I am absolutely positive I wouldn't be this way if I had never developed Crohn's. I don't have an eating disorder mentality naturally; got many other issues but I do believe that anorexia is not naturally within my make-up, unlike other forms of being screwed up.

I hate this. Hate the choice between hunger and pain, fatigue and malaise from an act which is meant to be life-giving - eating isn't meant to make you feel worse every single time, regardless of what you eat.

I can't come to terms with this. I realise it could be miles worse, and yet it doesn't help me one single, solitary jot.

And I think being on HW isn't helping me. Sorry folks. Should never have joined. Think I'll put in a request to admin to close this account. I did better when I wasn't obsessing over Crohn's. There's nothing I can do. Either the hospital will help me in two weeks' time or it won't. And if it doesn't, then thinking about it all the time won't help me. Becoming a hypochondriac hasn't helped my cause. I need to find new interests in life other than food and CD, for real.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8568
   Posted 4/20/2010 7:23 PM (GMT -7)   
It's not that I don't have other interests; just don't have the concentration span to maintain 'em for long. Think on top of everything else I have ADD.

God, my life is a mess. And never, ever post with rock bottom blood sugar levels just before bedtime. Helpful tip.

Sir WipesALot
Regular Member


Date Joined Nov 2009
Total Posts : 42
   Posted 4/20/2010 7:56 PM (GMT -7)   
Hey 80sChick/Steph... just looked at your sig and I could honestly cry for you. Have you by chance gone the antibiotic route? At the beginning of my horrible flare that started Spring of last year and went until a bowel resection in January, they tried Flagyl and Cipro on me but it made me vomitty and I got off after three days. I then went through the whole mill of drugs just short of the biologics.

When I got my bladder fistula in November mid-flare, they put me on Bactrim, an antibiotic. I had also cut way down on sugar about two weeks earlier and started some probiotics around the same time and still felt like absolute hell. The abdominal pain I was in every day last year from the flare is like nothing I've ever experienced. I'm talking drop-to-my-knees-and-lose-my-breath stuff. This is even while on 40mg of Prednisone, which I could not taper beyond 20 without nightmare pain and a shot back up to 40, still in pain.

So where am I going with this? Right... the Bactrim. The DAY I started the Bactrim (for the UTI from the fistula), my flare symptoms began to - totally unexpectedly - subside. And after a week, I felt like a new person. It didn't get rid of the stricture they found on the colonoscopy in December - or the fistula for that matter - but it stopped the awful pain and other symptoms. I also ended up on Flagyl again and something else I can't remember, since they could not get rid of the UTI without surgery. But I'm telling you antibiotics at the time were a virtual lifesaver for me. Nothing was touching the flare and the Bactrim seemed to arrest it in a snap. Ten days and I swear I was brand new. From a flare that nothing else would touch. I had been days away from the Humira, but they couldn't give it to me because of the infection. Talk about a blessing in disguise. Surgery is what has (for right now) set me free and I'm on Humira now to maintain remission, but I saw your situation and wanted to mention my experience just in case it helps you or someone like you.

I know everyone is different, and every issue is different, and for that matter every flare is different, and I am certainly no doctor... but if you are stuck like I was, it might not hurt to ask your doc to try the antibiotic route. Who cares if it's unorthodox at this point. It's not like anything else is helping you. I hope this helps.
Humira, Prilosec, probiotics......

DX May 2004
34 YO M


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/20/2010 8:32 PM (GMT -7)   
Nice Cup of Tea,
I hope you are still here, and I hear you loud and clear, both your frustration at not being able to eat, and believing you will never get better.

I spent my first 15 years negotiating food, most of those years I ate very little. Duodenal crohn's is what I started with, and it moved on for years.

I freaking love food! I grieved my inability to eat, daily. I cut things out, I brought some back in. I have puked every kind of food at one time or another.

The drugs, as they came out, still didn't work. More grieving. Too many days in those years I just wanted to die, but my will to live was strong.

I really thought I would never have a better day, and I came very close to that thought. Surgery helped me and then more surgery messed me up again.

First surgery resulted in a pouch -- my greatest fear and it turned out to be a god send -- that and the duodenal cd went into remission, so.. yay.

Here's the thing, when we are so undernourished, as you wrote above, we are not thinking clearly. Accept this, but don't beat yourself up for it. We try, and I adapted well enough to manage University courses (part time was my full time) , but emotionally charged stuff would overwhelm me. And being sick day in day out is an emotionally charged situation.

I don't know how people work and not eat at the same time. I can't do that, though lord knows I tried.

Try the antibiotic route if you want to, google low dose naltrexone (I've just started it, so I hesitate to say much more about it at this time), as after a 9 year relative remission, I am flaring again. crap!

Most importantly get support. Let your doctor know what you are living with. Let your family and friends, or at least one, know what you are dealing with.

As for psychological support, not because you are mentally ill, but because you under great distress dealing with this, ok, duh, and this kind of support is truly helpful -- note, if you do not like the person after 1 hour, go find another one. It's like finding a friend, either some one is or isn't and you can't do therapy with someone who you wouldn't want as a friend. Or, maybe it's just me.

This is your life at the moment. It's painful privation and it's not fair, this too shall pass...

Try to get some nutrition in, home made chicken broth, and try to keep your electrolytes up -- brain really doesn't function well without salt and sugar.

Hang in there, you are not alone and yes, it really does suck.

BE well,
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 4/20/2010 8:37 PM (GMT -7)   
When I was eating a lot less a few weeks ago after I got out of the hospital I have to say, I did notice less pain, better bathroom situations. I guess since I was feeling better I was letting myself be more lax about eating but I guess I need to go back to the bland white bleh food. (I really miss salad..I made a delicious one involving spring mix, walnuts, craisins, avacado, mango, and either gorgonzola or goat cheese...mmmm...but I have a feeling it would wreak havoc on my stomach right now!)

The problem is, for me, I'm darned if I do, darned if I don't. When I don't eat, especially on days that I've had trouble sleeping (which is most) I wake up in the morning feeling so ridiculous nauseous. Sometimes, I won't even be hungry but I just need to put something in my system (usually a carb will help) to get rid of the freaking nauseousness.

I'm sorry you are so blue, CupOfTea. I definitely was feeling that was just a few weeks ago. I think either the steroids or the thyroid meds I'm on is making me eerily happy. But yeah. sometimes, you can't really say anything other than...crohn's sucks! Hope you feel better...:/
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  5 day hospital stay April '10.  Have to be put on 2 antibiotics and (cry) 40 35 30 mg of Prednisone.  Turning into a walking zombie with the lack of sleep (around 2 hours a night), but at least I've been super productive!
 
Debating going on Humira...need advice! :P


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/21/2010 6:44 AM (GMT -7)   
I am not a large eater and I am currently in remission. I eat a small breakfast, and a sandwich at lunch and that is it for most days. I seem to do better that way. Everyone is always commenting that I eat like a bird. But that just works best for me. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 4/21/2010 6:53 AM (GMT -7)   
Thank you, Sir WipesALot.

I am actually on antibiotics right now and have been for a few weeks for a recurring UTI, ironically. I am allergic to Flagyl, but have been on Xifaxan for an extended period and it didn't do much.

I had surgery a month ago to remove my colon and the dr said it was the worst he's seen. I'm doing much better since having it removed. I am almost off the pred! I go to see my GI today. We will see what he recommends for drug maintenance.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on:7.5 mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Flomax (for urinary retention). 


Sir WipesALot
Regular Member


Date Joined Nov 2009
Total Posts : 42
   Posted 4/21/2010 7:08 AM (GMT -7)   
80's... I'm glad you're doing alright now and thank God you are getting off of Pred. Best of luck to you for the future.
Humira, probiotics......

Bowel Resection - 10 inches terminal ileum - January 2010
DX May 2004
34 YO M


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 4/21/2010 10:51 AM (GMT -7)   
My biggest issue right now is I overestimate how good I am feeling and eat things I know are not the best. For example yesterday I split a 6 inch italian sub with my mom. I thought having a small portion would be ok. With most foods I can do that but apaprently not with spicy meats. I was up at 2:00am using the bathroom and I have never woken in the middle of the night for that before. I have a sneaking suspiscion the soup I ate for dinner did not help because before I realized it I had used 15 crackers in the soup!! Can we say BLOATED???? I am on entocort now so my inflammation is gone and I only have sporadic cramping so I overestimate what I can have. When my stomach hurt it was so much easier to avoid bad foods because I had no appetite. This disease is a challenge to navigate for sure. I am hoping you will stick around and just come say Hi every once in awhile. I noticed when I first started I was obcessed with this board. Now I pop in and out to see what it up. I realized being on here all the time and worrying about all the waht if's was not healthy for me.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 4/21/2010 1:09 PM (GMT -7)   
Nicecupoftea...I feel the same way. I am still new to this and still waiting on getting managed but eating is awful. I would rather skip food than eat..when I try, I get sick. The only time I felt decent was on the prednisone. I go back on friday.. maybe food someday won't be my enemy.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- currently Prednisone, Entocort, Colestipol, Propranolol
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8568
   Posted 4/21/2010 5:36 PM (GMT -7)   
Firstly, sorry about yesterday. In the frame of mind I was in, I really shouldn't have been posting.

I do feel better today. I gave in and ate lunch, a mid-afternoon snack and dinner, rather than try to go a 4th day on almost nothing. Stomach's been hurting like billy-o for hours, but my body obviously needed food, so despite the increased pain I do feel better. To be honest, even though I've had Crohn's for 11 years, I'm feeling almost as bewildered by it as though I were newly diagnosed. It feels a bit pathetic to be this taken aback by it, but I am.

I've noticed that most people with self-described "mild" Crohn's have had surgeries, or fistulas, or hospitalisations, or some other sign of what I would personally consider severe disease and which I've never have. Plus no doctor seemed to care less about my Crohn's until recently. (It's possible that might be an NHS attitude; somebody whose mum has Crohn's told me that they only seem to take IBD seriously when it becomes too expensive to ignore.) Anyway, the long and short is that I am genuinely surprised by what is happening to me; I suppose one of these days my easily boggled brain will take it on board and digest what is happening, as it were.

Thank you, folks, for your replies.

@MToronto2 - 15 whole years of hardly being able to eat? Wow. I honestly don't know how I would cope with that. Glad that you got a long-deserved remission, but sorry that it's coming to an end :-/ I'll look for a recipe for home-made chicken broth, because it's not something you can really buy in the UK. As for LDN, have heard of it but I think I'd prefer to exhaust the conventional alternatives first...

@Sara - It's probably the steroids making you feel happy :p The first time I took prednisone, for the first week I was bouncing. It gave me energy and got rid of my symptoms. I loved it. Then I started tapering...

@Nanners - That's a bit how I eat, except that breakfast is lunch and lunch is dinner. Used to eat quite a big dinner but not anymore - it's small now. Have wasted countless numbers of evenings feeling miserable, having zero energy, and being uncomfortable/in pain due to eating a big dinner and taking second helpings; do better in the evenings if I keep dinner little above snack size.

@tewcute - I have an appetite still, unfortunately :-/ I have lost it to an extent without a doubt, but not as much as I'd like - when I stop yearning for things like chocolate fudge cake (saw the most delicious looking slice in a cafe today), I know I will be there. At any rate, I couldn't agree with your last sentence more. The "what ifs" will drive you slowly round the bend if you let them. I'm not gonna let them do that any more.

@junerainbow - Good luck; I hope one day you will be able to eat normally again. Me, I dream of beautifully pink, smooth, healthy intestines :-/

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 4/21/2010 6:43 PM (GMT -7)   
Nicecupoftea--After 25 years with crohn's I'm finally working with a nutrionist on a regular basis--I wish it hadn't taken me so long to do this. In December, I was in the hospital severely dehydrated and at 78 lbs. Today, I'm 100. TPN basically saved my life in January and February. I love to cook and I love to eat but eating is can be so difficult. It hurts! We live in constant fear of what will happen if we eat this or that! And there just don't seem to be an safety foods (For me at least)--I can eat "it" today and be fine but tomorrow get violently ill. Anyway, the nutritionist is helping me plan, make choices, and really, really think differently about food as fuel and ways to get the nutrients I need. Also there are two books that really have helped me:

How to Cook for Crohn's and Colitis by Brenda Rosher

Cooking Well for the Unwell by Eileen Behan

i hope and pray you are able to find some family, friends, professionals to help you get the nutrients you need to function and live. I hope we can all enjoy food again soon!!

Sending healing vibes!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; TPN, propranolol and xanax; anemia of chronic disease


Lili_Enigma
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 4/21/2010 9:56 PM (GMT -7)   
Hi all, been awhile since I've been on but wanted to say hi.

I just have to say eating is my major challenge too, having been 89 lbs at 5'7 all through university and my early twenties, and not going above 115 or so until my mid-30's. I recently lost 50 lbs again in a flare up even though I was TRYING to keep from going back down that road again. I do feel better tummy wise not eating, have NO appetite and almost no "safe" foods, but I also have a demanding job and a 7 year old son I am trying to keep a balanced emotional state for. I find I lose it emotionally and feel so overwhlemed over nothing if i don't eat. I get exhausted and weak too. I think as much as we battle with food, we have to keep trying. I recently had a friend pass away who battled with Crohn's most of her life, and she leaves behind a 7 year old son. I think of her everytime I want to not eat, and ask myself who I am eating for...
I am also working with a nutritionist and she has been a God-send, helping me find easier to digest alternatives, foods i never would have thought of, foods to avoid, supplements to help digestion and build me up, and even fast and easy recipes to help a busy hockey-mom be able to cook on the go. Don't give up! I've gained 10 lbs back and even manage to get a bit of veggies in (sweet potato!) that I NEVER thought would be possible again. Work with your docotr, employer, public health, community services and even local Crohn's support groups. You'd be amazed what is out there and what things may work for you. I am off Entocort now for a bit anyway... and know there are always options out there that I can work with.

Hang in there and keep on trying to eat...it's worth it! :)

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 4/22/2010 12:07 AM (GMT -7)   
Nice cupa' I do know exactly how you, feel nothing worst than being afraid to eat! I think for me not eating comes on gradually, initally when I stopped for a day I was very hungry. Slowly by the second day the hunger pangs would be gone. Then I learned coffee took my hunger urges away so I could easily get through the first day. After awhile it would become easy to miss days at a time if having a flare. Unfortunatly now I'm having trouble getting myself to eat once a day. Understand I have 1 or 2 bad flares every month lasting 2-4 days where I don't eat. Then about 3 more days where I don't want to eat because I'm so sore and afraid to start the pain again and then 2-3 days of 1 meal a day and then finally 2 or 3 meals a day and then another flare and repeat. I guess I've taught my body not to be hungry over the last year and now I have to be very careful not to lose too much weight because then I'll have no reserves. A very fine line to tread. I hope this helps in some way or maybe I just need to put down my fear on screen. Rob
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

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