Severity of Flares

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

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/6/2009 7:37 PM (GMT -7)   
I have a question for you folks. How severe are your flares? I see several of you stating that you've never reached remission, or that you're going on 2 years of a flare, etc, and I wonder how severe the flare is. My husband has had 3 flares total (2 where they thought he just had ulcerative proctitis, and the last that you all know about that landed him in the hospital with a c-diff and crohn's diagnosis). All 3 flares were bad in terms of symptoms - he was not really functional. He couldn't sleep at night - he'd basically wake up and have to run to the toilet from anywhere from 1-3 am to about 7 am. And then every time he eats, he'd be running to the toilet. Plus he had awful awful stomach cramps that were entirely debilitating almost every 15 minutes, and basically could barely swallow water.

So, one of my fears, is another flare up. He's kind of been teetering right now - c-diff, IBS, crohn's, I don't know - but he's not in the hole . . . yet. He just got his remicade infusion today, so I'm hoping he'll pick up soon, and return to normal. Were his flare ups so severe because they didn't know he had crohn's, and so he wasn't really medicated?

He's on Lialda, Canasa and Remicade - with all these medications, if he flares up, is it likely to be less severe, and more manageable? What are your experiences?

Some folks say they take no meds, and manage flare ups with just diet modifications, and maintain for years with no meds. I can't even imagine this being possible for my husband - with the dataset of the 3 flares, I can't imagine him surviving with just diet modifications and supplements. Or is it that the diet and supplements keep the flares from being really severe?

Between flare ups, he leads a completely normal life - eats anything, and has no problems. Do the severity of symptoms during his flare ups mean that he's got a severe form of this disease? Will the flare ups be less severe, and more manageable now that he's on maintenance medications? What are your experiences? I know no 2 people are the same, but I would still like to know, just to prepare myself.

Thanks so much for your input.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/6/2009 8:16 PM (GMT -7)   
Hi Pv,
You hit the nail on the head that No 2 people are the same. My personal experience I was diagnosed with crohns 21 years ago and for about the first 5 years it was controlled reasonably well with meds then all of a sudden for no apparent reason those drugs stopped working so from that moment on my docs tried pretty much every drug going, had lots of bad side effects from some of the drugs eg. imuran induced hepatitis, built up antibodies and could no longer have remicade, methotrexate did nothing, humira also did nothing had a right hemicolectomy done about 5 years ago and never really recovered from that then my diagnosis changed from just crohns to crohns/colitis, then I would go to the bathroom around about 25-30times a day and have constant accidents so I became a recluse I was too afraid to go out because I always had an accident, it was the most horrible time of my life. So most recently I was rushed to hospital suffering with severe malnutrition and had to have an emergency ileostomy in early March this year, that surgery took 6 hours, then 4 days after that surgery I got an abdominal infection so I was back in surgery to have that drained, then they left my rectum in place with the possibility of a reversal but not to be either as I was severely diseased there as well so had a proctocolectomy on 30th of July this year. Now to top it all off I am struggling emotionally with having a bag and suffering now with bad joint pains which my rhuemy has diagnosed me with rhuematiod arthritis and also lots of iritis in my eyes as well apparently all due to the crohns, so Im back on methotrexate but its not working for my joints so looking like humira might be our next move. I hope my story doesnt freak you out but remember everyone is different I am just one of the extreme cases as my docs say. Take care and hope all goes well for your hubby. Keep us posted

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/6/2009 8:25 PM (GMT -7)   
Oh Andorable! I am so sorry for everything you've been through. I hope with this last surgery, and Humira, you'll finally get some relief, and go back to some normalcy. I have heard other people say that their stoma gave them their life back, so hopefully if you can find something to control the RA (and I hope Humira will do the trick), you will get back on track and have relief from all this suffering.

With all these health issues, how have you managed the business of daily living? Work, family . . .? Do you have family around to help you? I sure hope you do.

Thank you for sharing your story with me . . . while I hope that my husband doesn't suffer so much, at least you give me some hope that these tough times can be endured. I hope you'll soon see some light at the end of the tunnel.

((Hugs))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/6/2009 11:23 PM (GMT -7)   
Hey Pv,
My family have kept me going. I am separated and have been for 6 years but have 3 beautiful daughters and 2 grandkids that light up my life. I am 46 years old and spent a lot of my life ill so I guess I dont know much different. Everyone says how tough I am even my dear doctors but believe me I have had a few times where I have not wanted to continue my fight but in saying that I would never do anything silly, my family mean too much to me. As for work I have been on disability for years now too which frustrates me no end, I would love nothing more than to work full time and get the holday pay etc that goes along with it. I do however work casually in childcare which I really love. There are days where I just lay around the house but know I have to keep going. Your husband is a lucky man to have you taking care of him too. I hope your husband has a long remission (like forever) would be good. As for me I know something will eventually give, it has to. Thanks for your kind words and support, :-)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/7/2009 6:20 AM (GMT -7)   
PV many of the folks on this forum are on the more severe side of Crohns. The milder folks like me are mostly not posting on the forum and are out enjoying their lives. Even though I am in remission I stay with the forum because I love the people here.

As for your husbands flare being so bad, it is very common when folks are first diagnosed that they are the sickest. Its takes time to get diagnosed, and then more time to find the right meds. I personally believe that all Crohnies should use diet AND medication to control their Crohns at all times. I believe diet and meds are complimentary of eachother.

Hope that helps.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/7/2009 11:23 AM (GMT -7)   
Out of my 18 yrs of having crohn's I'd say the majority (easily) has been on the severe side, keep in mind not everyone symptoms are exact nor are they necessarily exact for each patient from flare to flare....I've never been in full remission my entire time sick with this disease, but I'm also allergic or non-responsive to traditional oral RX used for IBD, so for many yrs I took nothing at all and though Iflared quite severely I still managed to avoid getting any surgery done internally.

Then I got so bad that I put my skeptisism aside and went with the natural route, I also altered my diet (no junk, fast-food, processed foods, ect) what kills me though is that this being a long life disease, why people go back to eating "anything" they want (most likely meaning a less than healthy diet) when they finally find remission. Especially those that tend to be on the more severe side of flares, but even the milder ones may likely do better if they stick to eating completely healthy (just my opinion of course)...I grew up eating alot of candy/sugar, junky foods and such so I know first hand how hard it can be to completely alter that but what an amazing difference it really makes for overall health and energy.

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 12:25 PM (GMT -7)
There are a total of 2,735,434 posts in 301,303 threads.
View Active Threads


Who's Online
This forum has 151408 registered members. Please welcome our newest member, ChristineMdic.
306 Guest(s), 11 Registered Member(s) are currently online.  Details
DBwithUC, robotguy, dismissed, Girlie, reminder, LG13, Faustmann, PA_grandma, ChickenArise, rcmark, tommyc


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