I have a question to ask about remission

New Topic Post Reply Printable Version
39 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 4/26/2010 5:44 PM (GMT -7)   
Before I go and see a new GP today, I have a question to put to the forum about remission.  Alot of you talk about periods of remission. 
 
When you go into remission do you return to normal bowel function and are the other symptoms like sweating, shaking, insomnia , fatique, cramping gone? (as if you dont suffer an illness at all)??
 
Now that I know what the illness is like, I am wondering if remission actually mimicks not having an illness at all or if you do infact continue to suffer from symptoms, just to a minimal degree.
 
Thanks
Charlee
37y/o female from Australia
Dx: chrones April 2010
Meds: Currently : prednisone, calcium


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/26/2010 6:59 PM (GMT -7)   
It took some time for me to get into what I would consider a real remission, which lasted 9 years, or until 6 weeks ago. I had an ostomy for the first 4 years of that, so I can't tell you about the poop part. I can say I felt markedly better. The fatigue was just plain being tired, but I could move through it in a way I couldn't do with the CD fatigue.

My appetite was awesome!

I will say that I did suffer bouts of bad eczema and in the last 5 years and developed crohn's related tendonitis in my right hand and shoulder.

After I got reconnected I had some more digestive issues, short bowel being the big one, but I took Cholysteramine so I was not chained to my toilet.

So, yes, I felt healthier in remission than I did when flaring. Definitely.
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.


Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 4/26/2010 9:25 PM (GMT -7)   
MToronto2

Thanks for replying, I guess we cant expect to feel perfectly normal. But something relatively close to would sure make it a lot easier to cope with life in general. Just want to get back to work and get rid of the symptoms getting to me and stopping me from everyday living....oh what I could achieve in just one day!!

Charlee
37y/o female from Australia
Dx: chrones April 2010
Meds: Currently : prednisone, calcium


WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/26/2010 9:32 PM (GMT -7)   
From what I have read here and elsewhere, once you show your first signs of Crohn's it never really goes away. I was "in remission" for a few years between my first major flare and my recent problems that started last year. What remission meant to me was more regular bowel activity, more energy, almost no abdominal discomfort. The problem is you have to keep taking the maintenance medications, and I had to watch out for certain foods and include certain foods. Those things remind you daily of your disease. I would have the occasional day or days when I felt abdominal pain or had more active bowel activity. It wasn't really flaring, but it was a reminder.

I think that it is important to accept that the disease is not going away, and to come to an agreement with it! Much like I made an agreement with the rat that lived in my garage. I left him alone as long as he was in the garage. The minute he started to move out towards my house was the day I called in the exterminator. When I have to, I pay attention to my Crohn's and bump up my medication, go on a low residue diet, or break out the prednisone! Other than that I try to coexist peacefully.
45 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March last year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Salofalk 2000 mg, Nexium, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Salofalk suppositories as needed.


Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 4/26/2010 9:47 PM (GMT -7)   
WriterMum,

Thanks for the advise. Will absolutely have to befriend the crohns. Treat it well and hopefully it will return the favour from time to time. What it doesnt understand is that if I dont get back to work still we will both be in trouble!!

Charlee
37y/o female from Australia
Dx: chrones April 2010
Meds: Currently : prednisone, calcium


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/26/2010 10:12 PM (GMT -7)   
Yes, well, it never seems to understand the importance of work.

I hope you have resources you can rely on, those you will need. I hope that you have friends and or family you can rely on. Time to rally your forces.

How's the prednisone going?
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.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 4/26/2010 10:13 PM (GMT -7)   
I think I might be in remission. My only symptoms are fatigue (not necessarily from crohn's, because my thyroid is off) and my liver enzymes have been high (could be pancreas related). Gut wise, I'm good. I do follow SCD, and have for 17 months. I also take Pentasa, and started LDN in January. I stopped Humira last September.
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


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/27/2010 6:54 AM (GMT -7)   
I am currently considered to be in remission. I will tell you that I do feel better, but that there are still bad days in there. Many of us also suffer with the occasional IBS attack too. I know thats what happens to me when I am too stressed. Others might call these mini Crohns flares, but without any inflammation occuring, I know them to be just IBS attacks. 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"*

atctackett
Regular Member


Date Joined Oct 2008
Total Posts : 114
   Posted 4/27/2010 8:34 AM (GMT -7)   
I have been in what I would call a remission for about a year now. I didn't really start my remission date until after my colostomy reversal in May of last year. For me the remission still includes frequent trips to the bathroom and diarrhea issues most of the time. I, like a previous post, suffer from short bowel issues since my reversal and take Cholestryamine as well. My energy level is great for the most part. I do get fatigued periodically, but I think that is more related to my remicade levels. My energy level always seems to drop about the time about 3 weeks after my treatment and then starts picking back up as I get closer to my next one. They are 8 weeks apart. My appetite is a little too good. I have gained back all of the 90 pounds I lost in 2008. I don't have the cramping and abdominal pains on a regular basis. I do periodically get some, but I monitor them very closely. If they persist more than 48 hours, I contact my doc ASAP and get his advice.
Shawn
 
Diagnosed with Crohn's in July 2005. 2 Bowel Resections in 2008.
Currently taking Pentasa 1000 mg 4X/Day, 6MP 100 mg/day, multivitamin, Lopressor 100 mg/day (Blood Pressure), Remicade IV every 8 weeks, Omeprazole CR 40 mg/day, Lomotil BID, Immodium BID, Cholestyramine 2 grams daily


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 4/27/2010 9:16 AM (GMT -7)   
My Crohn's is clinically in remission but I still have symptoms and still have to watch what I eat...nothing like a disease free person would experience.  There have been times when I don't have to watch what I eat nearly as much as other times.  Lately, I've been taking about 3 pills a day for stomach spasms (in addition to my 20 or so other pills) and had horrible stomach pains on Saturday (laying on the floor screaming, thinking I was going to die), so the gut by no means has been quiet.  But, there is a lack of other symptoms and a lack of ulcerations, so I am in remission.  I am at a healthy weight now.  But, my "Crohn's related arthritis" has been in a constant flare for 15 months and nothing works for that (what does work raises my liver enzymes and I can't take it anymore).  I've heard that if your Crohn's is in remission then the arthritis should be as well, but that is not true for me.  So, remission for me is DEFINITELY better than a flare...I can eat and I can function...but it is by no means living like I did before I had Crohn's. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/27/2010 10:20 AM (GMT -7)   
Zena, have you considered trying Low Dose Naltrexone?

I was Rx'd it for tendinitis of the shoulder (CD related) and since it's also now being studied for treating CD, I decided a month ago to try to go for a two-fer, as I started to flare. So far so good, my shoulder pain is localized and less than it was, and my range of motion is increasing. The best is that my appetite is coming back, which it would not be if I were taking steriods, they don't work for me at all, or taking nothing. It may also help the endo, I had that too-- seems silly to have both, but you and I are proof that silly is possible.

Start researching lowdosenaltrexone.org

The good news: minimal side effects, though I've been told it can take several months to work, I am already noticing improvements. There is a forum here for LDN and one for LDN and Crohn's, though this one is not moderated 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.


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 4/27/2010 11:18 AM (GMT -7)   
remission is less than 150 on the crohn's disease activity index
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/27/2010 11:27 AM (GMT -7)   
Ya, I just tried it and I know I'm flaring -- I got 105 so, meh, not impressed.
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.


Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 4/27/2010 6:30 PM (GMT -7)   
Thanks all

Will keep naltrexone on the list for my GI appintment in about 3 weeks. He wants to start me on imuran, but I need to discuss with him about all the options. This forum is helping me to pose some questions to him about different meds.

Prednisone is working ok I guess, put it this way, havent got any worse but not a great deal better either. Only new to all of this so I am yet to be able to tell what works and what doesnt.

Thanks again
charlee
37y/o female from Australia
Dx: chrones April 2010
Meds: Currently : prednisone, calcium


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/29/2010 10:29 AM (GMT -7)   
MToronto2 said...
Ya, I just tried it and I know I'm flaring -- I got 105 so, meh, not impressed.

Ya, I agree the CDAI is almost useless.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Rita67
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/29/2010 3:54 PM (GMT -7)   
I think it depends on whether you have had surgery or not. I am missing a significant amount of bowel. When I was in remission, my stool was never "normal" I didn't go as much as I did when I was sick but because I was missing so much bowel, I don't think my body had the ability to digest food the normal way because of that (does that make sense?LOL) I wasn't in pain like I was when I was sick and for the first time in my life I could eat ANYTHING...but I don't want to give you false hope...I think it's really individualized and everyone is different. The one thing that I wish someone had told me is that Crohns patients are more susceptible to flares if they take NSAIDS and as a result they should be avoided during remission if possible because they tend to trigger the disease.

When I was in remission, I had some joint pain was put on a NSAID and after only 3 doses it triggered my disease and I have been sick ever since...that was 8 yrs ago.

MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/29/2010 4:00 PM (GMT -7)   
I use Toradol, it works well for me without major stonering, even for cramp attacks, that's not what caused my flare or I would have flared when I was on it for almost a year...

Still otc products may be different...
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.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/29/2010 4:20 PM (GMT -7)   
In a remission, you are symptomless usually. There still may be signs of your illness internally. Usually, I feel pretty darn good, but every now & then something happens.. usually arthritis attacks. Somewhere there is inflamation I guess.

Matthew

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 4/29/2010 6:14 PM (GMT -7)   
My CRP was always ridiculously high, so when it came down to within the ‘normal’ range after straying remicade, I considered myself in remission (I could scarcely believe it, I was overjoyed!). I still have bad days if I eat something wrong, or if I drink too much etc – I am sticking roughly to the SCD. But most of the time, I mean almost ALL the time, I feel good (knowing how bad I used to feel).

I know crohn’s will always be a part of my life in some way, sometimes a big part, sometimes a smaller part. But I have finally come to accept that. It took me a good 4-5 years!

Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 4/29/2010 8:40 PM (GMT -7)   
Thanks for all the posts,

Seems to be relatively individualised. I would be happy if I could wake up and just feel like I could get on with things. Severely battling the mindset of a chronic illness and what the future holds as well. Once I get over that hurdle with more acceptance and less panic, I guess I will be able to tackle the disease itself better. Thanks again all

Charlee
37y/o female from Australia
Dx: crohns april 2010
Meds: Currently : prednisone, calcium, vit d, nexium, probiotics, fish oil


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/29/2010 9:10 PM (GMT -7)   
Your on your way Chrarlee, but these things don't need to be forced. I'm not sure they can be.

Then again, if you alter your expectations, saaay, such that waking up breathing makes for a good day... :)

If I've learned anything, even the worst passes.
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.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 4/29/2010 9:12 PM (GMT -7)   
How long have you had crohn’s for Charlee? I know it took me a good few years before I came to terms with it. My Crohn’s is very aggressive and it was almost like a rebellion – I’m not very good at looking after myself even though I know I have more reason to than most people

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 4/29/2010 10:52 PM (GMT -7)   
Technically from dictonary.com(hope i'm not breaking copywrite laws). remission is a) temporary or permanent decrease or subsidence of manifestations of a disease.
b).a period during which such a decrease or subsidence occurs: The patient's leukemia was in remission.
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.


Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 4/30/2010 4:14 AM (GMT -7)   
Oh....you guys...even going to the troulbe to look at the dictionary..feeling the love now!

Its so nice to come on and see what people are writing when you post something, even if you think its a rediculous question because its something I thought as I was writing it, geeze, what a stupid question to put to everyone. But its nice to hear that relief periods do exist. Pheobe, only been dx with crohns for approx 3 weeks, so in the infancy of the disease, however the GI said he suspects I had it probable for about 10. I know my health declined rapidly (and what seemed to be all of a sudden) in Jan 09. On and off work, lethargic, loss of apetite and about 20kgs weight loss. Crashed again badly in Nov 09, picked up slightl and down like a bucket in Feb 2010. Unable to work since then. Started pred in April with dx and waiting for the next instalment of meds from the GI in approx 2 weeks. Still feel awful, and thoughts of doom and gloom setting in rapidly. Family only new to this. Told my mother today I felt really bloated and very uncomfortable and she said "well thats unusual". Could hardly believe it - she came to the 1st GI visit with me and I have given her websites and booklets about the disease but I dont think she really gets how critical it can be. Dont get me wrong - shes adorable and very supportive, but leads a busy life herself and I dont think she fully understands yet. God, neither do I , but I guess when you feel like this - how can you not. thanks for all your posts. You all deserve the best in life for what you have been and are going thru every day.

Charlee
37y/o female from Australia
Dx: crohns april 2010
Meds: Currently : prednisone, calcium, vit d, nexium, probiotics, fish oil


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 4/30/2010 6:11 AM (GMT -7)   
I have had remission periods of up to 3 years! In remission I still have diarrhea - but thats not because of active disease or inflammation it due to a some permanent damage somewhere. I take codeine for it and it sorts me out for the day so I can still go out and do all my normal activities without an issue. Been in remission 14 months now and hoping I can last at least another 14!
 
 

New Topic Post Reply Printable Version
39 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Tuesday, December 06, 2016 11:04 AM (GMT -7)
There are a total of 2,733,556 posts in 301,133 threads.
View Active Threads


Who's Online
This forum has 151271 registered members. Please welcome our newest member, Namie.
329 Guest(s), 12 Registered Member(s) are currently online.  Details
Bololidat, Serenity Now, Scaredy Cat, Tick41, mpost, jabele, KatieBwithUC, pmm73, WORLD HEALING, peanut307, Traveler, iamamess


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