HealingWell
Search Close Search
☰

What's your longest flare? Starting to loose hope

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/21/2011 12:23 AM (GMT 0)
I'd like to know what's the longest anyone has been in a flare and then gone into remission?

I'm starting to loose hope that I can heal my gut. I've been flaring for a year and 8 months and I can feel myself getting sicker. I need to know if someone has been sicker for longer but still achieved remission??
Posted 11/21/2011 12:33 AM (GMT 0)
What medication are you on, if any?
Posted 11/21/2011 12:39 AM (GMT 0)
I've been flaring mildly for almost two years now....I will go a few weeks with no problems on the higher doses of Pred, and then when I go off the pred it comes back within a few weeks, and we start again
Posted 11/21/2011 1:09 AM (GMT 0)
      When first diagnosed in 1998, my flare lasted two months.  I then enjoyed a two year remission.  Flared again in 2000, was then switched to Colazal from Asacol with prednisone again,  flare lasted two months.  Flared in 2002, placed on 6MP along with the dreaded prednisone and Colazal.  Flared in 2003.  In 2004 my flares came twice a year and lasted about three months each time.  Hospitalized for second time in 2008, became prednisone dependent even with the Remicade, tried Humira too.  Had surgery June 2010.    I had ulcerative proctitis, ulcerations never entered my colon.
Posted 11/21/2011 1:23 AM (GMT 0)
I was flaring for a year and I was on prednisone. It kept coming back everytime I reduced the dose. Eventually I started 6mp and I was able to taper off but I should have started it sooner. Previously, I was in a long flre but I didn't have access to medication/insurance so it's hard to say whether the flare up would have been so stubborn if I were treating it properly. The more recent one, I was doing everything possible and nothing seemed to work.

What have you tried?
Posted 11/21/2011 1:51 AM (GMT 0)
I started to flare earlier this year in january and wasnt able to get it under control until late august/early september this year. Put on Humira and asacol as well as prednisone but am off that now. I would go weeks at a time without symptoms then out of the blue I would get really acute symptoms. Had two bouts with CDiff in there too. My GI had a hunch that maybe it was HSV (herpes simplex virus) because, when on Humira, HSV can present in the colon, which would explain the ups and downs of my symptoms. Ask your GI about it. The treatment is just valtrex which has almost no side effects and wont be bad on your body like antibiotics or steroids. It either works or it doesnt. He said theres no real way to prove if i had it but ever since i took the valtrex, i have been feeling much better and have gotten my symptoms under control.
Posted 11/21/2011 2:52 AM (GMT 0)
I don't know why my siggy doesn't come out sometimes.

I've been on 4 mg pentasa (mesalamine), went up to 40 mg prednisone (never achieved remission, so I took a slow taper), I've tried mesalamine enemas but I can't keep them in, or the pentasa suppository. Right now I'm going homeopathic (aloe vera tablets, probiotics, Arsenicum and Phosphate drops) because I know that when I go back to my GI he's going to push for Remicade and I don't want to go that route.

My frustration is that after all this time and most of it on prednisone I've not achieved remission. I'm afraid that my colon is too damaged for repair :(
Posted 11/21/2011 7:03 AM (GMT 0)
hey if it doesnt work out, surgery is not the worst option. It always seems daunting but it really is a good thing. I havent had the surgery but my GI has told me I will most likely ending up having it so i read up on it and the biggest complaint about the surgery ive found is that they didnt do it sooner. Im completely comfortable with getting it now but Im just gonna exhaust my options first.
Posted 11/21/2011 4:10 PM (GMT 0)
half a year, then I ran into 4 months' remission, then had a flare again, which lasts for 3 months until now. It seems nothing works effectively to bring me into remission. Hope you are lucky.
Posted 11/21/2011 4:18 PM (GMT 0)
I was literally in a flare for 5 years with different degrees of severity. I could not get into remission. I had what they call steroid refractory ulcerative colitis meaning I wouldn't respond to the prednisone like most people do. And none of the other types of drugs worked either. I was an extreme case. I had surgery in June 2010 and it's been smooth sailing ever since.
Posted 11/21/2011 4:23 PM (GMT 0)
I had UC for 10 years and then for no reason went out of remission and stayed that way for 2.5 years before opting for surgery. Surgery is the best decision I have made in regard to my health. I'm almost 11 years with a jpouch and couldn't be happier. I wish now I would have done the surgery sooner rather than later. I gave up 2.5 years of my life for UC.

Sue
Posted 11/21/2011 6:20 PM (GMT 0)
Guategirl,

Are your homeopathic remedies the ones given to you by the special naturpath you were going to see or ones you figured out for yourself?

Have you tried slippery elm bark powder as  an alternative to the mesalamines?

How about probiotics?

And lastly LDN -low dose naltrexone?

Posted 11/21/2011 6:58 PM (GMT 0)
Guategirl, I think I would consider a different 5ASA if you can get it. Where is the inflammation active? If it's low in the colon, maybe you could try Colazal, otherwise Asacol. Pentasa releases earlier and is better for people with Crohn's. You may also consider steroid enemas or cortifoam. Have you tried antibiotics?
Posted 11/22/2011 12:15 AM (GMT 0)
Not so sickly:
I have tried the cortifoam and couldn't tolerate the pain. I tired mesalamine enemas and couldn't retain them though. I have an appointment with my GI tomorrow, but my problem is that pentasa is the only UC meds I can get in Guatemala. I'll push for the Colazal though. Thanks for the suggestion.

InSoFla:
These are the meds my homeopath/osteopath has given me. I'm scheduled to go back this week and will discuss the slippery elm bark. What was the preparation you suggested for controlling tenesmus?

Thanks you all!
Posted 11/22/2011 4:29 AM (GMT 0)
Homeopathic remedies are my goal but have always failed me. I have spent so much time, money and hope with them. They just don't work for most. VSL#3 has some scientific data behind it but I noticed no benefit from it. Aloe Vera is a waste of time for certain. The others (so many of them) may slightly improve very mild UC symptoms if taken in extreme quantities but results are purely anecdotal and you can forget about them stopping a flare. Mesalamine enemas and orals and, if that doesn't work, azathioprine and infliximib is more likely to help. You may have to stop it using IV steriods...those work every time for me. I switch to orals then taper and stop. I wanted them to work...VSL#3, SCD, papaya, flax seed, bee pollen, aloe vera, fish oil, nutriiveda achieve, garlic, turmeric, molocure (what a joke), vitamin E, so many others...special products sold under pyramid schemes (cure alls) Good luck but beware of those just profiting from your condition. The scams are so bad in this arena.
Posted 11/22/2011 7:44 AM (GMT 0)
I had UC for years before it was diagnosed and took lots of ibruprofen, not good for UC. I also had C-diff once and developed diverticular disease.

Flared off and on again for 14 years until the final flare from hell, thought I was dying twice. Since my UC and diverticular disease were both in my entire colon, I'd had the disease so long and it was probable that I'd get cancer someday plus I didn't want prednisone again or Remicade etc. I opted for the surgery. I didn't like the possible bad outcomes from Remicade and I know a young lady taking it and she gets sick with ever infusion.

The final flare from hell was for 6 months until I had the surgeries. The surgery recovery is rougher than I thought it would be but I wish I'd done this years ago.

We are all different, maybe if I'd been younger I would have hung around waiting for a cure but I doubt it will happen very soon.

I watched the colonoscy screen and my colon was shot - looked black inside, the blood supply was messed up I just could not see how it could ever be brought back to normal.
Posted 11/22/2011 12:28 PM (GMT 0)
Guategirl,

The remedy for tenesmus is: Mercurious Corr, and it's worked great for me over the years. I hope it helps you too.

If your osteopath agrees for you to try the slippery elm bark - I would recommend you take in powdered form as it's much more effective because as you drink it down, it coats the whole intestinal tract. I take about 1 1/2 teaspoons mixed in about 1-2 oz. of water, then add the VSL into it, I mix it thoroughly using the back of the spoon to "mash" the lumps out against the glass, and drink it down. If you let it sit  too long, it will become very thick and hard to drink, so then you'll need to add more water to it.

Let me know how it works out for you.

I hope you feel better soon.


 

Posted 11/22/2011 12:43 PM (GMT 0)
Omigosh, I just had to express my sympathy! You poor thing- that's a l-o-n-g flare! I've been flaring since March, and I'm going to stop feeling sorry for myself immediately.

I wish I had some answers for you, other than hang in there- anything is possible, and I believe you'll get through this.

Hoping things improve soon! ~Ellie
✚ New Topic ✚ Reply