Crohn's newbie...it's a rather long vent, but I'd love advice

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Frantastic
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/30/2008 7:58 PM (GMT -7)   
I read a bunch of posts written by others, but unfortuately for all involved, everyone seems to have been dealing with crohn's a lot longer than I have. Hopefully, y'all will have wisdom to impart to me, because I'm really struggling with this.
Here's my history...
I was diganosed with crohn's about 5 weeks ago. I don't have a severe case of it, and until about a week ago, the entocort was working well (I really thought it was an absolute freaking miracle). Previous to that I'd been having copious diarrhea for about 10 weeks, very much complicated by this random fainting thing that I already had (neurocardiogenic syncope), which can be triggered by dehydration. So, for weeks, I'm pooping and fainting all over the place, missing work trips, missing work, humiliating myself on the tennis courts (until September, I played tennis 3-5 times a week and now, since the fateful day in the white tennis skirt, I haven't even picked up my racquet), having to have my mom come in town and stay with me for a month, because I couldn't be alone or drive myself, and all around turning into a sick, scared person I don't even recognize. Finally, after all the testing (and a prolonged hunger strike) I started on the medication and while still tired and kinda run down, felt like me again within about a week. I was able to start eating again, started on b12 shots, and was really pretty giddy. I had some bumps over the past few weeks (like when I left my medicine in Memphis over thanksgiving...they aren't kidding about the "every 24 hours" part), and I noticed that I still had more bowel movements than I did in the past, I just wasn't feeling debilitated by them. And then, about a week ago, I was a the movies and I ate some popcorn. Not even a lot of popcorn, maybe just a few handfuls. That is the only thing that I can trace back that has been different, unless the medicine just stops working sometimes.  Since then, it's the all diarrhea network again, even with the entocort and starting the lomotil every 4 hours again. I'm kinda waiting for the loss of appetite part again, because I think that will help, but I still keep wanting to eat. A lot. And then I go to the bathroom. A lot.
 
The doctor scheduled me for small bowel follow through on friday, so he can see what's going on.
 
Mostly, I just need to know how to do this. Am I doing this wrong? Is there a special diet? Do I need to be exercising more, vs being terrified of it? Does food/beverage temperature play into this at all? Am I being whiny and just need to man up?
 
Anyway, thanks for listening!

howecr
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 12/30/2008 8:24 PM (GMT -7)   
Hello,
I have had Crohn's for 10 years... The one thing I know for sure is that everyone is different.. when it come to what they can or cant eat.. You will find if there is a food you should not eat. you will know it faster than it seems humanly possible.. in genral for most people NOT all but most.. Popcorn, Nuts of any kind, Olives and caloflower is a bad idea for the most part..
when you find something that RUNS right through you Write it down. For example I cant eat ham it runs right through and causes intence pain.. However I can eat bacon and pork chops.. See what I mean completly random..
As far as you hunger strikes. (DONT DO THAT) try and schedule your eating around going out into the real world..
Believe me we ALL know what yoour going throgh. and NON of us would want to be back at the begining again,
I remember being so sick I actually had to sit on the toilet to drink water becuse It ran right out as I swallowed..
The good point to this is. you and your DRs will get it under control eventually. and then you will only feel THAT bad when you flair. which wont be all the time....
The best thing for you right now is a diary.. track food, note if it is hot or cold. BM a day. and how soon after what foods..
sooner than you think you will know your body and you wont have to track anything.
No matter what Crohn's Sux but it will get better
36 year old women, I've had Crohn's since 1997. and RA since 2006.
I get Remicade Infusions every 6 weeks..  Methotrexate by injection weekly.
Asacol, daily. and entocort instead of prednizone....
Im lucky I still have all my body parts. and hope to keep it that way.
 
Smile it makes people wonder what your thinking :)


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 12/31/2008 2:48 AM (GMT -7)   
frantastic! first lets start with humor, you say you got to "man up" after your wearing a white tennis skirt? gotta see that! anyhoo like howecr said above, everyones differant. ( seeother post on diagnosed today). wait till friday. before and during your xray, ask questions of the radiologist. be nice, a bit funny and most will explain what they are doing, what they are looking for and point out problems if they are obvious. generaly be curious and most drs will be glad to help explaining. they enjoy the dialoge better than the same old boring thing all day. good luck and let us know what happens.
randynoguts 



     http://www.geocities.com/randynogutsweb/


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/31/2008 3:45 AM (GMT -7)   
Hi and welcome to Healing Well , popcorn is a high roughage food I eat low residue which helps I avoid seeds too and like mentioned some foods are hard to digest so low roughage works for me as it is easy to chew easy to digest. You should look for a drink that will rehydrate you pedalyte might help. Having crohn's we do get dehydrated at times. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/31/2008 4:49 AM (GMT -7)   
Like randnoguts said, try and have so humor.Ask the doctors and radiologists questions about what they are doing. On my sm bowel follow through the did a live x-ray and the Doc showed me my appendix, sm int, etc. He even showed me the narrowing that I had. But I was upbeat and asked questions.
I know its a hard thing to deal at first when they tell you that you have Crohns. You think the world is crashing down on you and that your life is over. Then you start doing research on Crohns and you realize that it can be controlled by meds and that it is not a death sentence.
My advice is to eat good, exercise, take your meds, and laugh alot.
You'll get through it like we are...

Wolfie

P.S When I was in the hospital and first diagnosed the GI doctor came in and said "You got Crohns man!Live life!!". He was right.

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 12/31/2008 4:56 AM (GMT -7)   
Hi Fran and welcome. Sorry you have to go through this. A few tips that may help you. First start a food and med diary. Keep track of what you eat and how it effects you. Also keep track of the meds your doc gives you, dates started and how it works. The food diary will show you foods that you should avoid and without it you will not recall what disagreed with you. We are all different and what is bad for me may not bother you. For example lettuce does me in but cabbage is ok. After a while you will know what to avoid and no longer need to keep track. The meds though will be part of your medical history. You may see other doctors and it will be very helpful to know what you have tried before and how it effected you. Keep track of what tests you have had also. Keep up as much of a normal life as you can. Exercise and drink plenty of water . I know its the last thing you want when you have diarrhea but it will help you to not feel so run down and it helps your kidneys. Feel free to vent here anytime, and also joke around as Randy said.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 12/31/2008 5:54 AM (GMT -7)   
You definitely need to try and calm down... Being terrified and freaked out all the time can aggravate your Crohn's... As for special diet, like Howecr said, popcorn, nuts, and seeds can aggravate the bowel of most people with Crohn's, so it'd probably be a good idea to just out and out avoid them... Also, as I've recommended to many people, it's a good idea to keep a food diary... Write down what you eat everyday and how it made you feel... If you notice a certain food bothers you consistently, then it's probably time to eliminate it from your diet...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 12/31/2008 7:21 AM (GMT -7)   
Hi Frantastic! Yes, there is a special diet. Not successful for all, but for many! It's called the Specific Carbohydrate Diet (SCD). Here's a link to the main site:

http://www.breakingtheviciouscycle.info/index.htm

By eliminating the bad carbs in the diet (sugar, grains, etc.), you are no longer feeding the bad bacteria in the gut. The diet also focuses on putting as many good bacteria in the gut (probiotics) as possible through home made yogurt fermented 24 hours to reduce lactose to nearly none. Prior to my son's diagnosis he lost 15 lbs (that he didn't have to lose) and had to quit his sport (competitive swimming) for several months. After starting the diet he put the weight back on and began competing again. He is currently in remission and on no meds.

Consider reading the book "Breaking the Vicious Cycle" by Elaine Gottschall. It is the book that the site above is based on and will explain everything for you! Good luck!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


HanooN
Regular Member


Date Joined Dec 2008
Total Posts : 63
   Posted 12/31/2008 7:37 AM (GMT -7)   
First hope you feel bettter

My advice for you is to try to be active and busy all the time.
some food does affect you, not all. it is about try and error in this matter. also it is differ from one to another
dont think too much that you are sick.
always be positive
read, read, read
live your day, and learn from other people experience

good luck

HanooN

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 12/31/2008 9:02 AM (GMT -7)   

The really only true thing about crohns is what everyone says and is obvious if you read any of the threads on here.  WE ARE ALL DIFFERENT and therefore crohns is different for each of us.

 

Like you I feel I am a mild case as compared to many others on here.  So my 2 cents as it pertains to what I have learned about my crohns.  I liked the idea of a food diary, but then I learned that what I could eat today I can't eat tomorrow and what killed me when I ate it 3 months ago hasn't bothered me the last 10 times I ate it, so I gave up on the diary....but that doesn't mean it is a bad idea....it just doesn't work for my crohns.  I do a mix of organics, regular foods and SCD based recipes.  I still fail in my quest from time to time but for more than 50% of my intake I am eating healthier food.  And that seems to help my crohns.

I don't take anything for the big D because even a 1/4 tab of imodium AD clogs me up for days and then I feel sick from the back-log.  But that is me and my crohns.

The only drugs I take now are listed in my sign off.  I try very hard to stay away from drugs and am currently trying to manage my disease by curtailing the intake of processed foods and sugars.  I also am getting back to exercising.  A few other steps is that my wife and I got rid of all of the plastic food containers in the house and now we only use glass to store leftovers in and to re-heat in the microwave.  I got rid of all of my pre-coated cook ware and only use stainless and copper to cook in.  Time will tell if that helps me deal better with my crohns.

Obviously, in a not too subtle way i am trying to drive home th point of how IMO we have to own our own disease and treatment because we are all so different...this darn disease is affected by diets, our other health issues, our physical well being, our attitudes, our economic situations, and just about everything enviromentally.  That is why IMO it is so different for each of us.

The biggest affect on my disease I believe has been my medical treatment. Until I took control of it, learned and continue to learn about it, found a doctor who would listen to me and only suggest treatments rather than insist, I was doing very poorly.  My crohns has progressed in some ways and not so much in others.  I am able to travel almost weekly, I still work full time, drive over 40,000 miles a year, cook gourmet meals for friends and family, do volunteer work, and generally enjoy life.  I let this disease, my crohns, affect my life (because it will no matter what we do) but I do not let it run my life.  I let people know if they ask that I have it and let it go at that...if they want more information then I share some but not all of my issues.

I still set goals for myself that sometimes include my crohns and sometimes does not.  My greatest success has been my promise to myself that I do let it get me down...I never let it keep from trying to do something (go shopping, take my wife on a date, travel....what ever) if after trying to get a project done or trying to go somewhere I find that I just can't do it without causing myself harm or ruining things for those with me then and only then I will postpone my efforts...but at least I try before canceling anything.

and the last thing about me and my crohns...I never let myself get embarrassed or feel less of a person because I have an accident, or pass gas, or i have to stop every 5 minutes to go to bathroom.....this disease hits us at one our most private issues....poop, rectum, body functions...and well....I decide a long time ago that I had to get over my pride and just be open about things....have great sense of humor.   My last colonoscopy....my wife drew a coin slot on my left cheek and then wrote on my right cheek "deposit 25 cents , place eye to to the view finder and see the wonders of the world" (with an arrow pointing you know where).  the nurses and doctor laughed very hard and then asked if they could take a picture of my rear....what could I say but sure.

 

good luck.....you can handle this.


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/31/2008 9:36 AM (GMT -7)   
Well I have lived with this dd for over 33 years and I want to say you can live with it too. As most pointed out you should at least initially keep a food diary of how foods effect you. Many need to avoid alot of ruffage while in a flare, no nuts, seeds, peels etc. Some have had success with the SCD and Maker's Diet, but not all can tolerate it. Our diets are very individual. Also, many crohnies are lactose intolerant, so you might want to limit your dairy, although I can have some ice cream and cheese. But that might change were I to be flaring. When first diagnosed it is common time for us to be the most sickest. It takes a while to figure out our diet and medications. So please be patient. Also, my best tip to you is to always take some type of maintainence med at all times. Even though you are feeling well, your Crohns can still be in there ticking away at a microscopic levels causing inflammation and as the inflammation heals it creates scar tissue, which can in turn into to obstructions. This happened to me, I had a 20 year remission that ended with an emergency resection (surgery). So watch your diet, take your meds, and be good to yourself. Good luck!!!
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 12/31/2008 9:55 AM (GMT -7)   
Oh man that would suck, pooping and fainting!!!! Don't be afraid of exercise, it's so important for functioing bowels/bowel health...drink lots of fluids, take a good probiotic daily and indefinitely, if you can tolerate chamomile tea (not allergic to ragweed) then it's an excellent natural anti inflammatory...if you thus far do not have issues with blockages/strictures and have plenty of D take a fibre supplement daily (that's what my GI recommended I do, daily and indefinitely)...try and avoid refined sugar/artificial sweetners (use honey/Stevia instead) as well as processed foods/beverages (pop, un-naturally sweetend juices) caffeine and animal fats. So far I've had CD for 17yrs straight, this is some of the best advice I have to offer.

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


Frantastic
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 1/1/2009 5:17 PM (GMT -7)   
Hi All - I can't thank you enough for your posts and advice. It may sound sappy, but it's really nice and exceptionally comforting to throw my random angst out there and have experienced people tell me their stories and tips. It makes me feel WAY less angsty. I have started keeping a food diary again (since of course I stopped keeping one the moment I was feeling better, and before that I just wasn't eating anything but a banana and melba toast). I've now got dark chocolate (my absolute fave) off the "ok" list. I don't know if it's the sugar or the caffiene, but I'm quite sad to lose it (I overstate of course - if it makes me feel better and not have explosive diarrhea for hours on end, I'm happy to give it up) ! I have never heard of the SCD, but am checking out the website right now. I purchased some of the probiotic yogurt this past weekend, just haven't been brave enough to try it. I have started back on the pedialyte (and wish that the grocery had had something other than fruit flavor - ick) and smart water (which is supposed to have electrolytes). I am trying to keep busy and distracted, even if the business is silly, like playing scrabble on facebook!

Randy - I will keep my humor about me and charm the lab tech into telling me all the details tomorrow! Maybe he/she will think it's funny that I used the crohn's as an excuse to leave an unbeliveably terrible date! (I hope there is not a bad karmic reward for that - he was was creepy that I figured it all evened out!). I'll post deets on what happens tomorrow.

Wishing everyone health and happiness in 2009!!

Frannie

Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 1/1/2009 5:25 PM (GMT -7)   
Frannie: Welcome.

Popcorn is full of starch (as is all corn). If you find yourself sensitive to starch, you will probably do better on the SCD, as advised above. Starch causes klebsiella to grow, and there are good data to suggest that enzymes produced by klebsiella that are used to digest starch are what cause this disease.

Good luck and best wishes.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/1/2009 6:37 PM (GMT -7)   
Frantastic said...
I have never heard of the SCD, but am checking out the website right now. I purchased some of the probiotic yogurt this past weekend, just haven't been brave enough to try it. .


When you say you purchased some of the probiotic yogurt, if you mean Activia, I just want to let you know that some people here have had adverse reactions to it. It has one strain only of a bifidobacterium which Elaine Gottschall advised against. A better choice would be an organic yogurt like Stonyfield Farm. Better still is to make your own because it has 4 times more beneficial bacteria than anything you can buy at the store. It's really not hard to make, either. If I can do it, anyone can!

Also, good old chicken broth (or beef) made the old-fashioned way is incredibly healthy and HEALING. With a little sea salt added it supplies electrolytes and other beneficial nutrients without all of the sugar that the electrolyte drinks have (which can exacerbate diarrhea.shocked).

Good luck to you tomorrow and happy 2009!!!

Frantastic
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 1/3/2009 7:28 AM (GMT -7)   
I really wish that I had all of this good advice back in September, when I was guzzling gatorade and only feeling worse from it!! Who knew?? Small bowel follow through went fine yesterday. Not a big fan of the barium, which I instantly puked back up, but after a rest, was able to get it all down. The tech and radiologist were super nice. On the low-res screen, nothing alarming showed, just a narrowing in the terminal ileum (pretty sure I'm getting that wrong, but y'all will understand!) and a few spots he wanted to take back and look at high-res, but no blatant problems, so for that I am extremely, ridculously thankful. I was really hoping the barium would constipate me a little, but alas, that was not to be so!

Emom - I whipped up a batch of chicken soup last night so that I can get some broth in (knew all that jewish-mother-in-training stuff would come in so handy??)

Frannie

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/3/2009 7:33 AM (GMT -7)   
Just fyi I drink Gatorade all the time. It causes me no problems at all. Once again, we are all different in what we can eat and drink.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 1/3/2009 8:58 AM (GMT -7)   

Frannie,

 

nothing for nothing...and again we are different....I did the barium, small bowel, x-ray...both still shots and the new sonagram, live action, in color thing.  Took about 5 hours to get it all the way through.  The Radiologist (sipposedly a very good one and the head of the department) could not find anything too bad..."maybe a little narrowing" and "some spots that didn't show up the best".  The next week I was in the hospital under the knife having almost 3 foot of small bowel removed...the surgeon said it was some the most diseased bowel he had seen in years.  Yet the barium test missed it.

I do not tell you this to worry you, but rather to suggest that the test is not as good as it gets.  You may want to ask your doctor about the pill cam.  As far as I know the pill cam is the best and most accurate way to get a complete picture of the small bowel.  It can detect small perfs, ulcers and other affected areas.

Just a thought...good luck 


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


Frantastic
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 1/3/2009 10:04 AM (GMT -7)   
the capsule camera test is the one my doctor wanted to perform, but my insurance has denied coverage for it - twice.

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 1/3/2009 8:26 PM (GMT -7)   
Frantastic said...
the capsule camera test is the one my doctor wanted to perform, but my insurance has denied coverage for it - twice.
How aggressive has your doctor been?  I have had my insurance deny a few tests and certain drugs previously...but when I got on my doctors case and made him be more proactive I got it covered.  In my case I know that the office insurance person is handling so many different claims that she doesn't question a denial...she just passes on the news and does not fight for the coverage.  Once I had to get involved.  But unless I asked/demanded the doctor doesn't get involved because he doesn't even hear about it from his staff.
 
Once a year I have the same fight with my insurance...my insurance provides 100% coverage once a year for a colonoscopy as preventative measures....you must be 50 or over ...I am.  BUT...since I have crohns and the doctor orders it I have to pay the deductible....every year I argue that even though I am sick I should still be allowed the same free test.  They fight me, but then they give in.  Sometimes you just have to be a very squeaky wheel.
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 1/4/2009 8:39 AM (GMT -7)   
Narrowing in the TI is pretty typical for a Crohns SBFT and could indicate true narrowing from scarring or merely inflammation -- that test is not as definitive asthe capsule. I'm a 43-year Crohns veteran with mild to moderate disease, and the advice you have received here so far is all good -- watch diet, take meds, ask questions, realize this is a very individual disease. I learned early on that sometimes it just goes off on its own (as inflammatory conditions are proce to do|) despite ourbest efforts and adherence to medication and other regimes. It soinds as if you mayehave moderate,stable disease, which would be good news. about one Crohns patient in 5 fits that category, and we arethose most likely to manage our disease relative easily and avoid major complications and surgery. You'r doing all the right thkings, and be grateful that there is so much information (and so many treatment options) out there today, with more coming on line all the time.
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 3:21 PM (GMT -7)
There are a total of 2,734,936 posts in 301,260 threads.
View Active Threads


Who's Online
This forum has 151367 registered members. Please welcome our newest member, vtu15.
365 Guest(s), 21 Registered Member(s) are currently online.  Details
George_, Thankuall, blueberrymuffin, Jasperilla, PromisedaRainbow, chrisp1, dacarte3, dismissed, Serenity Now, Girlie, reminder, wpack3, Jack84, pmm73, Dmc695, BKelly, ks1905, ChickenArise, Poppie, Mister Mike, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer