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Crohn's Disease Forum » Support Forum » Crohn's Remission Support Group


 
11-30-2013, 04:28 AM   #31
rollinstone
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Hey, glad you're in remission! It's definitely possible to get cramps in remission, I think even people w out crohns often suffer from cramping etc, I think we just become more aware/paranoid of our stomach after being diagnosed, did your GI say you had any strictures, they could cause pain. All the best
11-30-2013, 08:04 AM   #32
Jayne11
 
Join Date: Nov 2013

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He said I didn't have any strictures! The part I find strange is that they last for days and I feel sore from them because the pain in so intense. Someone without crohns would have the cramping for a short period of time and then it would pass. Thanks for your help! I think that I just picture remission as pain free! Hopefully thinking on my behalf I think!
07-17-2014, 05:44 PM   #33
22yearswithcd
 
Join Date: Jul 2014
Location: Burlington, Ontario

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Hey, I just joined and started reading some posts. I thought I'd put in my two cents as I've been in remission for 22 years, maintaining CD with just diet management... then ... Crap... it's back with a vengeance.
I've been suffering for three months of weight loss, bleeding, no energy and massive headaches. Nothing seemed to work until three days ago when I started Prednisone 40mg.
Quite happy to say that I've already notice a difference. Still, scared that this will be a long road back to feeling 'normal'. Also scared about all the side effects that everyone is talking about.

Anyway, a really big thanks to all of you who are brave and contribute by sharing your knowledge and experience.

08-12-2014, 09:40 AM   #34
Stardust_Fiddle
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Join Date: Jun 2013
Location: Toronto, Ohio

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I have a quick question for those of you who are in remission. Per my scopes last week, I am clinically in remission, but I am still having symptoms and almost always have fat in my stool (sorry, gross, I know). Is that common, even with remission?
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Conditions: gastroduodenal Crohn's disease; chronic SIBO; bile reflux; gastroparesis; intestinal dysmotility; hiatal hernia; hypogammaglobulinemia; IBS; chronic migraine; fibromyalgia; sensory processing sensitivity; Raynaud's; congenital cataracts
Current treatments: Humira biweekly, Azathioprine 50 mg once daily, Xifaxan 550 mg daily on alternating weeks, Omeprazole 20 mg, Cymbalta (for pain), VSL#3 Probiotic, Iberogast, Remeron, Zofran; permanent TPN
12-03-2014, 08:27 PM   #35
Ann Morgan
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Join Date: Jul 2014
Location: Arizona

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I have the same question as stardust. I just got a new GI doctor.
Had a colonoscopy. Doctor said it was normal ( I have the paperwork to prove it......the results of the biopsies too.) New doctor said to not take any of my colon medications any longer. I am still having symptoms so how can I discontinue my colon meds. I must take Questran each day or I get sick. The reason I saw the new GI is because my symptoms changed severely, from years of diarrhea to terrible constipation in May 2014. But I still cannot go a day without the Questran. I did lower it from 2 packets per day to 1, for a while. I had some success in controlling my bowels. But, then unfortunately I got sore throat/laryngitis/cough/blowing nose with green snotm
My PCP gave me antibiotics. I did not know not to take antibiotics while having Ulcerative Colitis. The entire 10 days I was taking the antibiotics I had terrible diarrhea.
Now I am off antibiotics and still having watery diarrhea every single day no matter what I eat!!!!!!!!! So, here I am, back to where I was for so many years. I have gone back to 2 packets a day and continuing to take the very last of my Lialda pills........and looking for a new GI doctor in 2015. I don't like the doctor I chose this year at all. I still don't understand what remission is and what a flare up is.
12-03-2014, 08:46 PM   #36
Stardust_Fiddle
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Have you ever had a gastric emptying study? I have gastroparesis in addition to Crohn's, and most of your symptoms mirror mine. I hope for your sake that you don't have GP!
12-31-2014, 01:58 PM   #37
jrwky1
 
Join Date: Dec 2014

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Just needing some information. I have parianal Crohn's disease started having fistulas and abscess form... turned into surgery having a seton. Im allergic to humira and now starting imuran and Remicade today. Concerned bc humira made my hsv/hpv flare up, wondering if these new medications will too..... any info is appreciated.
03-13-2015, 11:05 PM   #38
grahamburgers
 
Join Date: Mar 2015
Location: Rhode Island

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Congrats to everyone here that's in remission!

I was in remission for eight years between my first flare up and my second flare up, which was very exciting but it was long enough for me to totally fall out of the good habits which were keeping me healthy (y'know, little things like, for instance, taking my medicine...) My second flare up was in 2012, so we're going on three years in remission now. Hopefully this time it'll stick. (Hopefully this time I'll stick to not screwing it up! :P)
06-11-2015, 06:00 PM   #39
teeny5
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I have been in remission now for about 4 years. Had 2 short flares during this time, but my GI says I'm in remission due to blood work being in normal ranges now consistently and having normal bowel movements and minimal pain. In July I go for my first colonoscopy since being diagnosed. I thought it was really odd since I was doing so good and was shocked when my GI said I needed one. He said they have to assess any damage the inflammation is causing.

So...we can still have inflammation even if symptoms are almost gone, regular pooping, and blood work is good?!?! I had no idea!

I too get into the mistake of "forgetting" I have Crohns when feeling great...and then I go into a flare. I remember the pain and the lack of energy when I was at my worst. I still can't believe I have this disease.

One thing I find myself doing is wondering if other ailments are related to the Crohn's...for example been having issues with TMJ and my eyes always seem to be bloodshot no matter what. Who knows!

remission is great, but now I feel like I have a ticking bomb in my gut and I'm just waiting for it to go off again.

Do you guys refer to your Crohn's in any way??? I refer to mine as a monster...so when I have pain I tell my husband the monster is angry today.
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Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"

Last edited by teeny5; 06-11-2015 at 06:23 PM.
05-11-2017, 09:51 PM   #40
Hopa
 
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Location: springfield, Missouri

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I have been in remission for 7 years now. I have only had 2 major flare ups. One when I started college because it was a lot of stress. And one right now!
UGH
It's finals week at school and my classes have been very difficult this semester (especially organic chemistry!). Also, I'm an extremely empathetic and compassionate person, and I've been really worried about some of my friends recently. Learning to cope with the stress is difficult, but I have to figure it out!

I hope others are doing well right now though!
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Currently in remission but looking to provide support for others.
Currently on: Remicade (infliximab)
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Junior in college
05-12-2017, 08:34 AM   #41
mboud88
 
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Location: Moncton, New Brunswick

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Have you ever considered meditation? It has done wonders for me especially in stressful events. Exercise could also help the mind. How long is this class going to be and how bad is your flair? I'm wondering because maybe a quick trip to the GI to be on some steroids short-term would be beneficial, if that's an option for you. Quick fix for me is epson salt baths, heat pads to the stomach, an easy diet like; no junk, caffeine, carbonated beverage, alcohol, cigarette or any stimulants (if applicable), dairy, some may say gluten but that's subjective, foods high in sugars, fats, even protein could be harder to digest. These are all things to consider. Maybe introducing a digestive enzyme before eating a meal would be beneficial. Probiotics could also help. Let me know what you think and don't do anything drastic, this is all good information but if you do eat a lot of items above and you change your eating habits all at once that could also throw you in a flair. Try to take out one item at a time and introduce another. Don't go from one routine and change the whole thing to something all new to you. When I was eating bad, junk food daily, I wasn't feeling bad but I was gaining the weight. When I decided to eat clean and healthy, my body told me lol from greasy foods to healthy meals you'd think that you would feel good, not me. I fell into a flair and was discouraged. Don't give up! Try to take away one thing at a time and introduce one thing at a time. That way you can more easily pinpoint what works for you or not. Hope this helps!
09-01-2017, 09:15 AM   #42
Jayess
 
Join Date: Jan 2015

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I've been in remission from Crohn's for the past 8 years, thanks to helminthic therapy. There's a wiki dedicated to this therapy which you can find by Googling "Helminthic Therapy wiki", then searching for "Crohn's" or "IBD".
09-01-2017, 09:20 AM   #43
Guerrero
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I've been in remission from Crohn's for the past 8 years, thanks to helminthic therapy. There's a wiki dedicated to this therapy which you can find by Googling "Helminthic Therapy wiki", then searching for "Crohn's" or "IBD".
Hi Jayess, can I ask where are you doing this therapy (country or region...) and if it was your doctors that convinced you to try it?
09-01-2017, 01:41 PM   #44
Jayess
 
Join Date: Jan 2015

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Hi Guerrero, I’d had two resection surgeries prior to 2008 to deal with stricturing of my small intestine, and then joined a clinical trial at Nottingham University that was designed to assess the safety of using helminthic therapy in Crohn’s patients. This was only a preliminary trial so of too short duration for subjects to see any significant benefit, but it was long enough to indicate that this therapy had potential to help not only my Crohn’s but also my very severe food intolerance, which was the bigger problem for me at the time.

After completing the trial, I purchased a further dose of hookworms from a commercial supplier and I haven’t looked back since. My Crohn’s has been in remission for the past 8 years, my health is much better all round and, after having previously had to live exclusively on a medically prescribed hypoallergenic powdered ‘food’ for many years, I can now eat a normal diet again. And I'm completely drug-free.

Four specially domesticated species of helminth are available commercially for use in therapy and all of these can be shipped to wherever you live, but you need to start with the info on a page of the Helminthic Therapy Wiki that's dedicated to IBD. You can then access other pages on the same site listing the helminth providers, etc. This site is the definitive database for HT, but, infuriatingly, the Crohn’s forum won’t let me post any web links because I haven’t yet posted 10 posts to this forum! But, let’s try a work-around. Type “Helminthictherapywiki” into a Google search and this should give you a list of sites, with the wiki itself at the top. Once you’ve opened the site, type “Helminthic therapy and inflammatory bowel disease (IBD)” into its search box and this will give you the page you need to start with.

Also, you should join the "Helminthic Therapy Support" group on Facebook (Again, I'm sorry I can't give you the direct link!) This is the main meeting place for helminthophiles, and you'll be able to ask others there who have IBD about their experience.
09-02-2017, 04:27 PM   #45
Guerrero
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Wow that's great.
I'll have a look, thank you very much
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