Was in remission for years.. now flared up :(

[need2heal]

Hi everyone,

I first found I had crohns in 1999. I was in the hospital for a month on TPN, I was sent home on 80 mg of predisone and asacol.. over the first few years I was on various drugs pentasa and immurane. For the past 8 years I have been feeling wonderful and enjoyed what seemed like a crohns free life.. I was controlled by diet, rest and exercise... it was wonderful. Man.. how we soon forget the pain.. Since January of this year I am now in flare up number 3... I am back on asacol and 30 mg of predisone. I was wondering if there are any others who have experience long periods of remission and then all of a sudden boom here you are in a flare up!

Any suggestions or stories would be appreicated.
Thanks for the ear.

 

[InkyStinky]

:welcome:

Sorry to hear you're flaring again - that really stinks. Before my flare last summer I had a 3 year med-free remission (that came after years of being on 6mp). My last flare was really out of the blue, and it was really depressing to have to go back on meds again. Finally got off the pred earlier this year - thank goodness! And the 6mp is keeping all my gut-related Crohn's stuff undercontrol.

Are you tapering the pred, or did your docs start you at 30mg? Is it helping you enough?

Glad you found this forum!

 

[Lisa]

Yep - when I was first diagnosed, I went a couple of years I think in remission...then flare, they shorter remission....that was the cycle - each remission period was shorter and shorter.....until the Remicade - been pretty much symptom free now for close to 5 years.

 

[Regular Joe]

Hi Need2,

Welcome to the forum. I undrestand your frustration with this disease, and how it seems to randomly do what "it wants".

Almost 8 years ago, I believe I had the onset of Crohn's disease. I didn't have the diagnosis back then, but more extensive evaluation was recommended, but another bigger issue also sprouted AND what was the onset went into remission. My terminal ilieum had nearly closed, leaving only a 17mm opening. The small intestine walls showed narrowing/thickening, and I was diagnosed with a partial obstruction of unknown itiology. I couldn't eat when this happened, and I was on a liquid diet for several weeks.

I started back on low residue eating, and after about 2 months of liquid followed by a low residue diet, I started a "normal" eating regimen, but was extremely cautious and toatlly avoided anything that was known to cause problems. At the time, I didn't know it was Crohn's, and I didn't care what it was, I just knew I wanted to avoid the partial obstruction ever again. They warned me if it happened again it could mean emergency surgery.

So I essentially avoided further symptoms by changing my eating habits and my diet, and little did I know the "dieting" habits I adopted were consistent with IBD management. But I became focused on an emerging issue involving a tumor, and the onset apparently went into remission...for about seven years. I can say this now because I retrieved my medical records from seven years ago, and if I would have followed up as recommended, they probably would have discovered Crohn's disease.

Well I got the tumor under control and eventually removed, and maybe a couple months later, I started getting the classic Crohn's flare symptoms that I still have today, although the flare I'm having now is mild. This went on for almost a year back and forth with a team of specialists that all agreed that I had "some form of IBD", but my dealings with gastro doctors took a little while longer to find my GI. One look for him, and he diagnosed active (flaring) Crohn's, which pathology confirmed along with other bowel issues.

So I had a flare that lasted about a year, got under control for almost 2 months, then it seems to have sprung back into activity for the past 2 months. So I somewhat understand what you're talking about. I was symptom-free for a little over 7 years. Then it came back and has been active off and on for well over a year now. Today it's "officially" confirmed, but that's just a piece of paper.

This disease is serious business, and it's a learning experience. Thanks for joining and I hope we can be helpful to you.

Joseph

 

[Crohn's 35]

Welcome to Canadian Crohnie! I had to have had remission after a first surgery for almost 6-7 years, but after a stressful time in my life, moving, and a job change, it could of been activated from the stress and not taking total care of myself, made the mistake I could beat it and it will never return. Ha, make me laugh...NOT, since then a second surgery which was botched in my opinion and have not had remission at all from it. Series of medications that have failed for me, once again looking for something to help. I am currently getting looked into another Specialist in Toronto because my current Gi is about to retire within a year or so.

Our system in Northern Canada is overloaded and waiting times to get to see a specialists are long , as you may notice. Thinking of trying LDN, if my flares calm down. Trial and error having this disease for all of us comes sooner or later. I am on 30mg of pred now but a quicker taper and pentasa and 2 flagyl a day, hate that stuff. Take care, glad you are here!

 

[DustyKat]

Hi need2 and :welcome:

I'm glad you found us here. My daughter had surgery 4 years ago and has been is remission ever since, of course I don't know when she will flare again but I'm hoping it's a long time from now. As you have seen already there are many here that know exactly what you are going through so you are not alone! I hope you stick around, lots of friendly people and loads of info and experience. Keeping my fingers and toes crossed that the meds do the trick for you.

Welcome aboard!

All the best,
Dusty

 

[ameslouise]

Hello and welcome!

It's nice to hear that long remissions are possible! I hope you are able to attain another one very soon.

-Amy

 

[Dexky]

Hi Need2 and welcome!! I was wondering like Sabrina, if 30 mg pred hasn't worked by now if they shouldn't up the dose. I hope things turn around for you soon! Good luck and stick around!! There are many knowledgeable people here to help you!!

 

[Joyce]

Hey need2. Welcome I'm kinda new on here too. I was in remission for a very long time like maybe 20 years I think, up until Aug/Sept. 2009 not sure if I'm back there yet or not, should be close. I hope.

 

[need2heal]

Wow
A big Thank you to all who took time to share their stories. I believe this site will be a valuable tool.
It is so nice to know your not alone in our daily stuggles.
I look forward to learning more

 

[Astra]

Hi Need2
and welcome

What a shame it's come back with a vengenance!
I was thinking about the Pred dosage too, how about upping it to 50mg then start tapering down after a month, this is how I did it, I'm now in remission.
Remission for me is no inflammation, of course I get other symptoms like D, but I'm not in pain at the mo!
From dx in 2005 I had been in remission for 5 years, til a major flare this January, hospital for a week, blocked and infected, high doses of anti biotics and steroids etc.
Stress contributed to this, divorce, moving house, xmas, stressful job and being complacent and not taking my Pentasa!
hope you find some relief soon
lotsa luv
Joan xxx

 

[duck68]

Welcome to the forum Need2. Everyone is so helpful here. I'm only relatively new to Crohn's so I can't help with your question re: remission as I don't believe I've been in it yet. Hopefully you will get back into remission again soon...


Joan - how do you know there is no inflammation? Is it through a particular blood test?? I get so confused as I don't know really what remission is, will I know when I'm in it? What is a flare - to me, if I still have D, then I'm still in a flare...this disease is sooo confusing...

:yrolleyes:

 

[Astra]

Hiya Vicki

I think CRP levels indicate that there's inflammation, also my gastro palpating my tummy, it didn't hurt, he couldn't feel any swelling neither. different story way back in Jan, my CRP was 261, and even I could feel the swelling, the doc touched my tummy then had to scrape me off the ceiling!
I've put this somewhere before, but my doc explained that he's only interested in inflammation, not the frequency or amount of D. This can be controlled with a sensible diet, but inflammation needs meds, ie Pred or similar, before it gets out of control and turns septic. Flaring to him is inflammation.
I still have D, depends on what I eat tho, but I have no pains whatsoever!
So therefore I'm maintaining, I'm in remission!
hope this makes sense!
xxxxx

 

[duck68]

Thanks Joan - it does make sense. I'm having blood tests again next week (incl CRP) so will be interesting to see how it is - I think my last one was 328.

Take care,

 

[YogaGirl]

Hi and welcome, needtoheal.

I was in remission for three years and started thinking "Hah. I beat it for good." I even began to tell myself that I must have never had Crohns, or that I was at least Crohns-free. WRONG. It came back for me about a year ago. I have been treating it (not very successfully) this time with natural things like probiotics, fish oil, and turmeric, but that has not been working so well lately. The pain and swelling has been so bad in the last few weeks that it was either back to docs, procedures, and meds, or find my husband's gun. Obviously I opted for the former. We live to fight another day. Best of luck to you.

 

[lucycharley]

i have had 2 lots of major surgery and both times i have gone into remission. its lovely. but both times have flared back up again. when we have surgery it seems to "rid" of it for a while. but it always comes back as there is no complete cure i am now on azathroprine 50mg a day and its amazing. has really helped me xx

 

[DustyKat]

Hi lucy and :welcome:

It's great to hear that you are doing well! Sounds like you have been through quite a bit. Would you like to post your own story in this forum so you can welcomed properly. I hope you stick around as this is a great place for support and info.

Take care,
Dusty

 

[karrieg]

I am new too. I also had quite a nice long remission which I think I may be coming out of but not sure. I was also diagnosed in 1999 though in retrospect I am sure I had it long before. That is just when my symptoms suddenly became very bad with bleeding (I had 2 blood transfusions), fever and major weight loss. That only continued for 2 months before I was in remission and since then I have had almost no trouble. After a few years I too thought I was cured for good or that maybe I never even had it! But finally after 11 years, I am having some signs that it is flaring- feeling feverish on and off for a few months, nausea after meals, constant aching in my abdomen and sometimes bad pain. Starting asacol today, which I have never been on before so we will see what happens!
Karrieg