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03-24-2013, 03:47 AM   #1
mike mcdermott
 
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i want to here from people that have beaten this disease and how they did it because i'm still going through it after being in remission for several years, and now find its come back but with a new twist...like i have a problem digesting my food of if i drink a soft drink i get like a heart attack feeling which scared me shit less so if anyone can help email me please...

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03-24-2013, 08:21 AM   #2
AMurderofCrohns
 
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It can be very disheartening when you go through remission because you want to think hey, there really isn't a problem here after all! Along the way, the eating habits come into play with this thought process and if you aren't the most disciplined person (I'm not!) you can get stuck in this game with yourself that its okay for you to keep doing what you've always done in spite of the pain and suffering it is causing you. The first thing you are told when you have problems with digestion and identifying what is and isn't okay is to keep a diary. Avoiding keeping a diary is part of the game. But what I've found in life is writing out my thoughts when I am confused is the most efficient way at getting answers. Sometimes you just need to see it in writing to know for sure what you are dealing with. This is true of all of us not just Crohn's only it is critical for Crohnnies because we are dealing with a disease that can ruin our lives and we need all the support we can get to win the battle!
03-24-2013, 09:57 AM   #3
nitty
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Hello!
My Crohn's is mainly in the colon, but I do also have a hiatus hernia and I have found that if I have a very cold drink it can get stuck at the point of the hernia and cause considerable pain which does feel like it is my heart, which is of course very close to this area.
If you have a hiatus hernia or some other issue causing obstruction there it could explain your difficulty eating and the pain you described. Sounds like a gastroscopy could be in order.
03-24-2013, 04:13 PM   #4
mike mcdermott
 
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Thank you nitty I think you are right I had one of those colonoscopy before when I first got diagnosed with crohns in my colon and have been on meds for it for about almost 20 years, more or less might be time to have a gastrocopy done and have them look at the other end too haha please keep in touch with me...

Last edited by mike mcdermott; 03-24-2013 at 10:22 PM. Reason: word error
03-24-2013, 04:56 PM   #5
mike mcdermott
 
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Last edited by mike mcdermott; 03-24-2013 at 10:25 PM.
03-25-2013, 04:28 PM   #6
Avery
 
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I have read that Crohns can be anywhere in the digestive tract. That would explain why on a number of occasions I had a very hard time swallowing foods & actually had to spit it back up because it would not go down.
03-25-2013, 04:40 PM   #7
CrohnsChicago
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I have read that Crohns can be anywhere in the digestive tract. That would explain why on a number of occasions I had a very hard time swallowing foods & actually had to spit it back up because it would not go down.
Yes crohn's can appear anywhere in your digestive tract from your mouth to your anus but more commonly appears in your small and large intestines.

Were you ever diagnosed with any inflammation or signs of crohn's in your esophagus? Do you still experience that or did it go away?
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Crohn's-Colitis May 2012
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03-25-2013, 05:15 PM   #8
Avery
 
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When I was diagnosed it was in my small intestine, but I know I have had it in other places in my digestive tract from time to time. But I dont feel a need to continually be checked & prodded. In my esophagus, Ive had it a 3 times in the past 20 yrs. or so. Most recent was a few months ago. I have had food get stuck on the way down, so I know its been there too.
04-04-2013, 02:53 AM   #9
KimberlyP
 
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I have problems keeping it under wraps to, I'd go though remission and them bam right back at stage one does any one know how to get iron with out the pills it makes my anomie a better but my crohns worse??
04-04-2013, 03:15 AM   #10
rollinstone
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I have problems keeping it under wraps to, I'd go though remission and them bam right back at stage one does any one know how to get iron with out the pills it makes my anomie a better but my crohns worse??
You can get iron infusions
04-04-2013, 08:51 AM   #11
Karen
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My hubby has beat the odds

He was told in December 2005 ... that he had Crohn's
Lost close to 30 some odd pounds over 8 months till finally going in
Went thru lots of remeicade treatments
And was on lots of medications ... One that I hated him in { Predizone }

And by 3 years into this with lots of support & keeping well ... he went off all medication & then the GI told him if you start having issues or problems again COME BACK IN and so nothing has happened since ... So, I can say PRAISE the LORD for keeping him away from surgery !! So, here we are 2013 and he has GAINED most + a little more weight back and is able to eat things that he VOWED not to eat back then ... so he is doing much better !!!
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04-04-2013, 12:58 PM   #12
Avery
 
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I can definitely link certain foods with causing a flareup. Like milk , coffee, etc. I also have had remissions up to 2years. At one time. There are some studies linking IBD to sugar intake and processed meats etc. If a person continues on a unrestricted diet it will Eventually start taking a toll on your digestive health. At least that's how it works in my case.
04-05-2013, 07:40 AM   #13
Karen
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04-15-2013, 12:10 AM   #14
KimberlyP
 
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You can get iron infusions
hmm iv never heard of that before, how whould i go about that? any new info would be great
04-15-2013, 01:47 AM   #15
Jennifer
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@ KimberlyP - You'd have your iron levels tested. Generally you'd try supplements first and then be retested about a month later to see if its gone up (I started at 325mg/day). If not you may be asked to up the dose and then retest in another month (I take 650mg/day and now my iron levels are in the normal range). If it still hasn't gone up then you can request iron infusions or your GI or GP may recommend them.

@ Mike Mcdermott - feel free to check out other people's success stories on how they gained and maintained remission here: http://www.crohnsforum.com/forumdisplay.php?f=72
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
04-22-2013, 11:21 AM   #16
Sparkle2012
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I can definitely link certain foods with causing a flareup. Like milk , coffee, etc. I also have had remissions up to 2years. At one time. There are some studies linking IBD to sugar intake and processed meats etc. If a person continues on a unrestricted diet it will Eventually start taking a toll on your digestive health. At least that's how it works in my case.
What kind of diet are you on?
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Chronic Stomach pain, Gerd, Anemia. Rosacea, Migraines, Skin Issues
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Doc:"chubby=not Crohns"
GI #1: Pillcam, DX Crohns Humira ordered
GI#2: NOT Crohns; cancel Humira. pillcam stuck X6 wks! RX Entacort!
11/2012 ER SM bowel stricture resection/GB
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04-23-2013, 02:26 AM   #17
Artisan105
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I take Nature's Bounty- Soft Iron Gel-Caps 28 Mg. Ferrous Gluconate Tabs.

Reasons Below:
-Iron promotes energy utilization and normal red blood cell production*
-The Ferrous Gluconate is an easy to absorb form for people like us with Crohn's or IBS*
-It also comes with Folic Acid, Vitamins B-12 & Vitamins C* Everything we need :] in easy to swallow & absorb formula* (Make sure to get the one with these 3 extra vitamins).
-It comes in 90 capsules! And $5.00 dollars per bottle! WOW! That is less than $0.05 cents per pill. Deal! Savings! Even cheaper if you get 2 or more bottles from Amazon.



This is my suggestion from my experience for the Iron problem. I been in remission for a while now and this stuff works wonders for me & it is priced just right. Remember everyone is different so give it a try if it works it's a keeper if not then gotta try something else.

Much love & grace.
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04-23-2013, 06:06 PM   #18
Sparkle2012
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Thanks for sharing!
04-24-2013, 06:58 AM   #19
Karen
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Have a great Wednesday !!!
04-24-2013, 09:34 AM   #20
Sparkle2012
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Karen, where are you from in Ohio? I'm from Fairmont, WV originally.
04-28-2013, 12:09 PM   #21
Avery
 
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Sparkle2012
I am not any specific diet. My diet consists mainly of vegetables,organic when possible), fruits (peeled apple is my favorite), chicken, fish, roots (beets, yams, carrots, yucca, taro) and turkey. Seeds for snacks(sunflower, pumkin), organic cereals with almond milk-that does not contain carageenan, for breakfast or range free eggs. I very rarely eat beef , maybe twice a year and its the range free or bison. I noticed it takes longer to pass thru my system and it slows me down. I also cut down on sweets & use honey or raw cane sugar at home instead.

I basically do not eat anything that has caused me to have a flareup in the past (Milk, icecream, coffee, concentrated OJ, soda, greasy fast foods, hamburgers, some mexican dishes made with pork fat (lard) & pork bacon). Keep in mind some of these foods will not seem to be a problem at times which can be deceiving. Ice-cream, I have been able to eat but other times I've had to run to the bathroom. Coffee's effects can creep up on you slowly.

I also drink, "whole leaf 99% aloe vera juice" 2x day & eat a greek yogurt 2-3 times week. Actually the aloe vera will help to heal the inflammed intestines. some time back I had the pain on my lower right abdomen that lasted for weeks (I had started drinking instant coffee at that time), After stopping the coffee the pain was still there so I started back on the Aloe juice, within 4 days the pain subsided & has stayed away since. This is from an article: "The caffeine, oils and acids in coffee irritate the stomach lining, which can cause excessive production of hydrochloric acid leading to a variety of digestive ailments".

It works 90% of the time for me. I know that certain foods can make Crohn's worse because when I eat home made healthy dishes, I never have to run to the bathroom. I also take a strong multi-vit 2x daily with a strong enteric-coated fish oil.
04-28-2013, 07:46 PM   #22
Sparkle2012
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Thanks AVery. That's pretty much in line with how I'm trying to eat. I don't seem to have issues with foods or coffee that I've noticed. But I'm eating healthier foods now and I'm thinking about doing the Paleo. If not that, for sure going organic. That is going to be a big change so I need some time to get onboard. Keeping alcohol to a minimum until i know if I have to take any medication. I want to get the fecal cal test before I go on medication to see if there is any evidence of inflammation. I feel good. Foods don't bother me. I don't have D. I assume that test will show if Crohns is in there quietly destroying my bowel...but I would think I'd have some pain in that case. This is a very confusing disease.
06-20-2013, 05:34 AM   #23
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It can be very disheartening when you go through remission because you want to think hey, there really isn't a problem here after all!
That is exactly how I feel sometimes when I kind of step outside the box.
07-16-2013, 04:42 AM   #24
CeeCeeGo
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Hi guys - I am new to this support group.

My 'remission' story is that clinically all my markers (bloods and FP stool test) show that I am in remission (according to my consultant). However, I still get the big D and some mild lower right quadrant Crohns pain. Just been through 2 weeks of very loose stools - so not convinced yet that I am in remission?

I have agreed with my consultant that we will hold off any Crohns meds for the next few months as all the ones I have tried to date have caused major side effects/allergic reactions. I do supplement (see my signature) and have found that this has really helped.

My main problem at the moment is stress (mainly work related) and I am looking into Amitriptyline and hoping to do a 8 week course on mindfulness in Sept. Again, my consultant seems to think that I could also have IBS and that the stress is causing that to flare.

That's me at the moment.
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Carol

DX - June 2012 with mild/moderate Crohns. In July 2012 bowel perforated unexpectedly and needed emergency surgery.
Current meds/supplements - Budesonide (reducing dose over 3 months), B12 injections (every 10 wks), Vit D tabs 800iu x daily, Ferrous Sulphate 200mg every day, Folic Acid once a week
Previous meds - Allergic to Azathioprine, 6MP, Pentasa & Asacol, Methotrexate injections (didn't work). Stopped Humira after 2 years due to ineffectiveness.
07-16-2013, 05:35 AM   #25
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I have crohn's on the full digestive tract (from the esophagus to the anus). So far my upper systems have been at bay (once and I while i will get very bad canker sores in my mouth and throat) and haven't been vomiting at all.

My lower systems however have been acting up. I agree it's hard when you are feeling so well because you almost forget, in a way, what having crohn's is like. I think it's a mental thing. When we think of disease we think of this constant, always present problem that never subsides...and with crohn's that int always the case.

I always hate when i get flare up's because it's like a slap in the face "Hey you have this disease!"

Gotta keep pushing through, though!
07-16-2013, 11:49 AM   #26
Avery
 
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I recently addded a strong probiotic ( Ultimate Flora Critical Care 50 billion) to my list and have noticed great improvment in how I feel and bowel movements. I have read that probiotics have shown to help digestive disorders.
08-05-2013, 04:41 PM   #27
ellie
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I have Crohn's colitis, and am currently in remission (verified at colonoscopy, mucosa visually normal, and inflammatory cells in the upper normal range on histopath.)
Like Avery, I noticed significant improvement in GIT symptoms after introducing regular probiotics. (In general the bowel is almost a symptomatic these days)
Interestingly, my collection of EIM's seem to pop up now and then totally unrelated to bowel involvement, and without much logic as to what triggers them (sacroiliitis, costochondritis, most recently erythema nodosum, and uveitis which fortunately DOES seem to follow the bowel pattern!!)
08-06-2013, 12:10 PM   #28
Avery
 
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I had been using yogurt or kefir for a few years but after a while I didn't notice the same benefits as before from it, so I decided to switch to a stronger version in capsule form. I had used different ones in the past but this one seems to have almost immediate benefits within a few days my symptoms (bowel movements) cleared up. And of course when your digestion is stabilized your energy levels and health gets better.
09-30-2013, 03:48 PM   #29
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Hi all! I've decided to join this support group cuz my GI doc says I'm in remission...what does that entail? I show no inflammation, good blood work etc, but i continue to have major D and cramping. Have periodic incontinence, and times that i have chronic pain/discomfort for days at a time. Is this normal? I've had this disease for a loooonnnnggg time and been through a lot and was hoping to see this come to an end. I was on a BC pill continuously, to avoid periods due to so much pain and increased CD symptoms, and stopped taking it a year and a half ago. Had a vaginal ablation done to help stop the periods, but they returned and so did the increased symptoms. Now I haven't had a period in a few months and believe I'm beginning menopause. I have an appt coming up with my GYN to discuss if i have a hysterectomy or not now that the periods have stopped. Anyway, what Im trying to say I would like to hear from others who have been told they are in remission but continue to have symptoms. Have had ER visits 3-5x a year for pain relief and CT occasionally.
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diagnosed: Crohn's desease 1988, Hiatal hernia, reflux, chronic pain syndrome
surgeries: 2 bowel resections(removed ilium; approx 2 1/2-3ft of small bowel and some of colon) 4-5 rectal fistula repairs; gallbladder and appendix removed
Current medications: Immuran(azathioprine)100mg, nexium 40mg, alprazolam, wellbutrin, lexapro, lomotal, donnatol, monthly B12 injection

In the midst of my first flare in 13yrs
11-29-2013, 10:12 PM   #30
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I just joined this site and support group and I wish I had of four years ago. I was diagnosed with Crohn's disease in 2010 and it's been a battle. I've been on every medication and had to come off of Humira and Remicade as they caused my crohns to become worse. My GI specialist said I was one of the worse cases he has ever seen. I had a colonoscopy three weeks ago and was told on Tuesday I was in remission! Probably the best news I've ever gotten. I'm currently on Imuran and was on asacol but have severe headaches, nausea and fatigue on a daily basis. My GI told me to come off the asacol as a shouldn't need it now that there is no inflammation and he feels that these symptoms can't be related to my crohns as there is no inflammation. But just like the girl above (long time crohnie) I have had severe cramping and gas pain the past two days. I had this while on asacol too so I can't see it being the lack of this medication. I'm a pro at my diet and I haven't gone off it. I had these cramps the day before my colonoscopy as well and the scope and biopsies still came back clear. Is this something I have to expect? All this pain even in remission? it's not quite what I dreamed it would be! I understand I will still have cramping if I ate something wrong. What about stress? Even though I'm not flaring can I feel the symptoms from stress with my crohns in remission? I would like to add that I'm a nurse and I still can't figure out all of the answers to this crazy disease!
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