Question: How long after your first flare did it take to get to remission?

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Deleuze
Regular Member


Date Joined Nov 2007
Total Posts : 22
   Posted 4/4/2008 7:51 PM (GMT -6)   
Hey all,

So I am at my one year anniversary with colitis and feeling a bit down. My condition has improved somewhat (20-30 BMs down to 10-12) but it still is really rough. It is difficult when I reflect on how profoundly my life and the life of my fiance has changed since I was diagnosed.

I was wondering how long it took some of you to get into that first remission period after diagnosis? Am I typical?

-Deleuze
Diagnosed April 2007
9x Colazal a day
In the middle of a month long Prednisone treatment (second time)
5ASA Enemas every other day
Probiotics
Multi-vitamin
Fish oil
Cod liver oil

fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 4/4/2008 8:21 PM (GMT -6)   
I am anxious to hear this answered as well. I was diagnosed in August of 07 and 2 Lialda/day put me in total remission for six months. I thought I was good to go!!! I didn't even know anything about UC or do any research b/c I thought as long as I took the medicine I'd be fine. Oops! I got really sick about 6 weeks ago I guess and this is 10x worse than my original flare that led to the diagnosis. Still struggling, trying to wean off of the Pred, but as I get down to 15mg I'm afraid it's coming back. I'm starting SCDiet tomorrow.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/4/2008 9:27 PM (GMT -6)   
Don't be discouraged by my answer, because I'm not the typical UC-er. It took me 5 years because the usual meds didn't work and initially Remicade wasn't approved for UC so my insurance wouldn't cover it.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 4/5/2008 8:30 AM (GMT -6)   
It took me 3 months to get into remission after my first diagnoses. But every year like clockwork I flare. 9 months remission 3 months flare. You can set your watches to my routine
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 4/5/2008 9:10 AM (GMT -6)   
After a year of trying Asacol, Rowasa, Prednisone, Azathioprine, supplements and diet with virtually no improvement my GI said it was time to decide between Remicade and colon removal. I went with Remicade and in a few days I felt a lot better. Within about 6 to 8 weeks I was 90% of my old self and when I reduced my Asacol by 4 pills a day I got to I'd say 98% of my old self!
I believe that some of us have a drug resistant UC, i have met several people with a story similar to mine who had no relief until they started Remicade. If I get as sick as I was again I will probably have my colon removed.
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 4/5/2008 9:36 AM (GMT -6)   
It took me about 6 months for full remission when first diagnosed. This last time it took me over 2 years to get back into remission.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission (approximately 10 of those years without any meds)
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema every 4th night, will try to spread it out more. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 
In remission since Jan 2008, can't believe it.............


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 4/5/2008 10:49 AM (GMT -6)   
Hi Deleuze..haven't seen you for a while. I can't remember where exactly is your UC...throughout or limited?

Before you were put on pred for the second time...what meds were you using..exactly?

You're not going to like my suggestion...stop the fish oil. Supplement with Calcium/Magnesium with D....GNC has them for a good price...I take 4 daily.

What is your diet like?

You could consider to take a stool bulker fibre supplement....I just found out about Prodiem capsules and will be purchasing them tomorrow. There are definitely other stool bulkers out there..Metamucil (psyllium) is the most popular.

Are you ingesting any/a lot of artificial sweeteners?

Hang tough....I think with some changes you might see some improvement if some symptoms aren't UC related. It's difficult to differentiate sometimes.

What other supplements are you taking?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 4/5/2008 11:44 AM (GMT -6)   
It took me two years from diagnosis to find the right combination of meds for remission.  I was in the hospital with a flare about a year-and-a-half ago and put back on Prednisone and ever since then, every time I try to taper and get off of it, I flare again.  I just came out of a month-long flare after getting down to 2.5 mg and got upped to 10 mg again and have to taper by 2.5 mg every 2-3 weeks.  I'm so sick of taking this drug!

Ulcerative Pancolitis (dx'd 6/2002)
Pentasa (4gm/day)
Prednisone (10 mg/day)
various meds for other conditions
 


BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 4/5/2008 12:15 PM (GMT -6)   
I think everybody is different, so you can't get too freaked out by what other people go through. When I was first DX I went to a support group for people with UC (unfortunately not around anymore) and was overwhelmed with the stories, thinking my life was somewhat over. Well that was almost 10 years ago and for the first six years, my UC was pretty much controlled by Rowasa and my DX episode wasn't that dramatic, I was bleeding a lot and had D, but I had always had D since I was a teenager. Funny thing is I thought D was how everybody went to the bathroom--hey, nobody talks about bowel habits as part of conversation, so how did I know it wasn't normal. The past two years have been challenging: major flare, two week hospitalization, couldn't work for six months, etc. But I just went back to work FT and I'm hoping for the best. I still have problems, but managable if I really take care of myself--my biggest challenge right now is chronic pain and fatigue but that's a whole different story. Now that you have a major medical condition, you have to really take care of yourself, rest, decrease stress, don't sweat the small stuff, walk, my dogs really help with the mental stuff, find a new normal for you. Good luck.


Quincy: noticed you suggested stopping fish oil, please explain. I take it b/c I thought it would help nutrition wise, but if you know of a reason not to, I'm up to hearing about it. Thanks.
Dx Ulcerative Colitis 1999; IBS; GERD; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Prozac, Endocet (as needed), multi vit, probiotic, fish oil, calcium 1200 mg./day, Prednisone (off/on, unfortunately).


mikeg999
Regular Member


Date Joined Apr 2008
Total Posts : 62
   Posted 4/5/2008 12:31 PM (GMT -6)   
The first time took almost one year. Until I was told otherwise, I thought remission was when I no longer had bm urgency and frequency. I still had blood and with consistent usage of rowasa enemas each night, I totally clear in the next 2 weeks.

My current flare stated at Thanksgiving and I am down to 10-15/say. I hope the combo Imuran/Allopurinol does the trick.
54 yo male
First flare at age 49


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 4/5/2008 1:06 PM (GMT -6)   
My first flare was ten years ago. Back then my Gi was a pred believer. I started on 80mg and couldn't get off. I would flare below 15mg. It took three years before i could get completely off of pred. This flare is just about 2 yrs (still can't get of the darned pred!) but looking forward to my third remicade treatment. I think it may be working!! Sorta.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.


Deleuze
Regular Member


Date Joined Nov 2007
Total Posts : 22
   Posted 4/5/2008 1:13 PM (GMT -6)   
Thanks for the replies, it's just nice to see the range of experiences people have.

I am also taking fiber supplements Quincy and my colitis is throughout the entire colon, although my doc seems to think it is limited primarily to the rectum and sigmoid right now.

Looks like a lot of people need to go on remicade to get through the plateau I seem to have hit, I really feel like that is the path I am headed down. My doctor, however, is very wary of giving me that treatment.

My current dose of prednisone is helping quite a bit with frequency and pain, but I know that once I am tapered off everything is going to return.

Oh yeah, as for diet I just try and be conservative. No spicy foods and I try and limit greasy/fatty things. Over the last year I have tried a lot of different dietary modifications without much result.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 4/6/2008 1:18 AM (GMT -6)   
BigLucy said...
Quincy: noticed you suggested stopping fish oil, please explain. I take it b/c I thought it would help nutrition wise, but if you know of a reason not to, I'm up to hearing about it. Thanks.
Because it's a constant supplement that might not agree with some.  It also could loosen stools and it can cause increased bleeding.
 
No documentation....just suspect.   And no, I don't take fish oil.  I did for a while, but actually didn't feel good on it.  Could have been coincidence at the time, however.
 
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 4/6/2008 1:21 AM (GMT -6)   
Deleuze said...

I am also taking fiber supplements Quincy and my colitis is throughout the entire colon, although my doc seems to think it is limited primarily to the rectum and sigmoid right now.

My current dose of prednisone is helping quite a bit with frequency and pain, but I know that once I am tapered off everything is going to return.

Oh yeah, as for diet I just try and be conservative. No spicy foods and I try and limit greasy/fatty things. Over the last year I have tried a lot of different dietary modifications without much result.
Hi...the fibre supplements should help...which ones are you on?  Do they have artificial sweeteners?
 
It seems you're improving...the lower part/rectum will be the last to heal....you should use the rectal meds nightly until you're off the pred...continue for another week or so and if all is good, go to every second night...
 
Regarding food..make sure you're getting enough protein.
 
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 4/6/2008 10:11 AM (GMT -6)   
I started flaring in mid-January, was DXed in mid-March, and was in remission by early July.


Good luck!
James

21 yrs old, diagnosed severe pan ulcerative colitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Remission since 4 July 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 8 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...
"God bless Remicade!"


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/6/2008 10:40 AM (GMT -6)   

 

 

I was diagnosed in Jan 07 and it took one year to get into remission. It has taken a lot of different treatments, but finally I am in remission and very happy. I was ready to give up and the doctor was already talking surgery--- I think the 6MP and the Remicade took care of me.

 

 


Jackie 42yr. old
Pancolitis - dx Jan. 07
 
Remicade- 5th infusion April 3rd
Lialda 2 tabs
 
Protonix, 6MP,
 
Lexapro, Synthroid
 
 


Bionic B
Regular Member


Date Joined Apr 2008
Total Posts : 42
   Posted 4/6/2008 12:02 PM (GMT -6)   
hi

i was diagnosed with ulcerative colitis in september of 2006 in which they had removed most of my colon and i had to wear a colostomy bag. i was then in remission until may 2007 in which i was hospitalised for a week. i was then in remission again until february 2008 in which i was, once again, hospitalised for a week.

i am currently using asacol tablets 1 in the morning and 1 at night and asacol suppositories 1 in the morning and one at night. when i was released from hospital this year the doctor had put me on prednisone for 3 weeks.

i currently have no abdominal pain, but at times do suffer from abdominal discomfort. i haven't had any abdominal discomfort however, for more than 2 weeks now.

the doctor is looking at having the reversal done next year, when my rectum has cleared up...so i am positive that it no flare ups will happen to prevent this op to happen.

Bianca 29 years old

Deleuze
Regular Member


Date Joined Nov 2007
Total Posts : 22
   Posted 4/6/2008 12:15 PM (GMT -6)   
Quincy,

Actually on your recommendation I take pill form fiber supplements.

I think I am gonna give myself another six months and if nothing improves perhaps talk seriously with my doctor about Remicade since it seems to have really had some success with people on this forum.

-Deleuze

quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 4/6/2008 2:29 PM (GMT -6)   
Ah.

It's a good option for when you need it...you're doing your homework.

Curious...did you try the rectalm meds nightly before you were put on pred?

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 4/6/2008 3:48 PM (GMT -6)   
I was diagnosed in June 06. I think I went into remission soon thereafter (the bleeding and mucous stopped). I had a flare (or what I thought was a flare...but no blood or mucuous) 6 months later so went on pred again.) In hindsite (no pun intended), I don't think it was a flare at all. I think it was just my nerves getting the best of me.

I guess it all depends on how you define remission. I still have frequent bouts of urgency. But with no blood and no mucous. And the stool seems to be pretty well formed. There are days I maybe go once and some days when I go maybe 8 times.

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/6/2008 5:25 PM (GMT -6)   
I would try to see if your urgency does not change after quitting the fish oil. As far as remission, sadly, I'd have to say that my real remission wasn't till on Remicade for several months, which was about maybe 9 years after being diagnosed! I had some time on Sulfasalazine and later Asacol that I did ok, also a few other times on Rowasa and other rectal meds where life was managable but I still had one or 2 rough days a week. Only when on Remicade did I actually go to the bathroom almost like a normal person but it didn't last. My GI's basically thowing his hands up at this point. :(
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 4/6/2008 8:08 PM (GMT -6)   
My answer is surgery for UC all the way...it really is the only cure.

It took me 3 months to accept that option from my original diagnosis...and sorry for the long post. If just recently diagnosed with UC, print this out and read it again in a few months after absorbing the shock of being recently diagnosed with a disease like this!!! I was a zombie for a while at the beginning and turned into one almost a year later.

I hope you find this informative if you or someone you know has UC.

My way of treating UC if I was a GI specialist:
Screw the medicines and the random Yo-Yo periods of being healthy and sick.
The standard treatment for UC should be prednisone (40-60 mg/day) and Asacol(4.8g/day)/Lialda for 4 to 6 months (I learned after reading a ton of websites on the matter). If this knocks you into remission...great! If no improvement...then recommend the j-pouch surgery and be cured. If those remaining people with UC are totally freaked out on the surgery option, only then, let them pick Remicade, Imuran and/or the other harsh drugs and let them kill themselves slowly because of their fear of surgery. Surgery shouldn't be the last option for GI specialists to recommend.

My rational for surgery:
Why sacrifice your other healthy organs/body for one lousy colon that you can live perfectly without. I'm a civil engineer and that was my point of view on this disease. If a window is broken in a building, fix it, don't turn up the furnace or air conditioner and ignore the problem...it's irrational thinking in my opinion and I cannot believe that this is the standard medical practice for this disease.

My experience with the 20+ pills a day:
I had my first of 3 (j-pouch) surgeries in Feb 2008 after one year of hoping the medicines would work. I refused to go the Remicade and Imuran route...because the risk of developing unusual cancers that lead to instant death, if found, wasn't for me. I was diagnosed with UC (pancolitis - whole colon involved) on 3-5-07 and was on prednisone (only 20 - 40 mg/day) and Asacol (4.8g/day) for a year that did nothing. It got my BM down from 20+/day to 12 (after 2 months into treatment), but no other improvement. It did however give me osteoporosis and I became anemic (at 8 months into treatment) - add Actonel and Iron Pills to the list.

My experience with a year of prednisone and what I learned/got from it:
If your on prednisone for more than 3 months, have your doctor order a bone density test!!! It's just 2 simple x-rays and completely painless. If you are losing bone mass, then they can give you Actonel (2 pills once a month) to hold your bone density where it is at, then you can discontinue it when finished with prednisone. Unfortunately for me (I'm a 31 year old male), I'll be on it the rest of my life due to my original GI doctor's negligence. Once you lose 33% of your bone mass, you have osteoporosis. You can lose as much as 10 to 20% within the first 3 months of being on prednisone...a fact they will not tell you on the drug sheet. GI doctors seem to be ignorant of this fact since several patients can go years before developing OP or breaking a bone years later. Once you lose bone mass, you cannot really get it back!!! The most I've seen is certain drugs...2-year daily PTH injections allowing you to gain up to 11% of bone mass after taking it for 2 years and that's only for specific bones of the body...risk from PTH is bone tumors/cancer. You lose that bone mass % all over your body. The worst thing is that it is totally painless, you find out you have it when you break something. I had only one symptom, and that was tooth sensitivity to cold things (3 months into treatment) never had it before and never had a cavity either. My GI couldn't figure that out.

In addition to the OP diagnoses 8 months after my UC diagnosis, I could feel myself slowly dying (sleeping 14+ hours a day and still tired and no energy) and not having any type of life...just existing in bed or on a couch watching TV. I could barely go to work (office job) and cook a meal at home. I missed over 40 days of work last year and nearly exhausted all of my leave time (that I accumulated over my 8 years). I work for the state government, otherwise, I'm sure I would have lost my job if I was in the private sector.

In addition, I didn't have any guidance from my Akron, OH GI specialist who was a retard and couldn't connect the dots. GI doctors will never tell you when you should be in remission while on a certain drug therapy.

I would say, if your on something and do not see any improvement in 3-4 months, try something else and/or another doctor. My GI doctor just said hum...I don't know why your colon isn't fully healed (6 months into the ordeal). He never mentioned the j-pouch surgery or any other drug treatments other than Imuran and Remicade...and that was after I told him I was changing doctors and going to the Cleveland Clinic to have the J-Pouch surgery. He also told me that he would be surprised if they would operate on me because my colon wasn't bad enough!!! Well...they did 4 months later!!! He also told me that he didn't want to tell me about surgery because of his past experience of people freaking out on him. I just think he liked milking my insurance for the monthly visits.

Anyway, I learned that any drug that suppresses your immune system, turns your internal organs into the consistency of butter and that they cannot hold staples or stitches during an operation. This is why there are so many 2 or 3 stage j-pouch surgeries...not necessarily due to the poor condition of the patient, as many are told. So, I say the long term effects of the drugs are worse than the disease itself. Also, taking steroids for asthma and for allergies will do the same thing to your internal organs. They will heal up again after discontinuing prednisone or other steroids, however osteoporosis is permanent.

My final decision for surgery:
The only thing that my original GI doctor said that had any meaning to me was...even if your in remission and feel "normal"...your colon is still inflamed on the cellular level even it it looks normal during a colonoscopy. This is why your colon cancer risk goes up to 32 times normal 20 years after the UC diagnosis. These cells are constantly inflamed they will have a high likelihood of mutating into cancer.

So my way of thinking was....if I somehow find the magic pills/herbs combo that puts me into remission, I'm not really cured and I have a high probability of losing my colon anyway 30 to 40 years down the road. Plus, I get to deal with random flares that last months at a time for the rest of my life. So why should I play a constant game of Russian Roulette with these drugs that have terrible permanent damage to my other currently healthy/normal organs and systems in my body if I'm going to lose my colon later in life anyway.

This is what made the surgery option a no brainer for me.

The results of surgery:
My only regret about the surgery was that I wish I did it 6 months earlier. No more being in constant pain, no more running to the bathroom, I can eat whatever I want, no more pills (other than Actonel), and I can travel again without fear of accidents. I do have a bag and it really is no big deal!!! I now can control when I need to go to the bathroom...how ironic. I go about 5 times a day...when I need to pee! I have my life back again and feel just like I did before being diagnosed. I cannot even tell my colon is gone and feel perfectly healthy again and I can sleep all through the night without bathroom interruptions. I'll have my ileo reversal surgery in 4 more months, and then, I'll really be back to normal. If the pouch acts up (chronic pouchitis), then I'll just get a permanent ileostomy. I had this ileostomy for 8 weeks now and would never go back to my days living with UC ever again. The pain from the surgery lasts about 6 weeks...but no where as bad as the constant pain I had from UC. In fact, I could tell the pain from UC was gone 5 days after surgery...just had pain from the incision and abdomen. Your Energy levels take about 6 months to come back to normal...but I'm much better than I was a year ago and have much more energy now.

Hope this helps all newly diagnosed UC people out there. I spent all of last year reading about the UC stuff and did a ton of research before making my decision for surgery. Hopefully, you'll get the surgery and be totally cured of UC faster than I did. Just do your research first, find a great GI doctor, hospital and surgeon who has done several of the J-Pouch operations.

I had/having my surgeries done at the Cleveland Clinic. My new/current GI doctor is wonderful - Dr. Shen and my surgeon is Dr. Remzi. They specifically specialize in J-Pouch pouchitis cases and that's why I picked them.

Take care and good luck battling and curing yourself of this terrible disease.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays

10/2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all

10/12/2007 Diagnosed with Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily Iron Pills to the list

2/12/2008 open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds except Actonel and feel normal again

8/2008 J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled


jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 4/7/2008 6:05 AM (GMT -6)   
My GI explained that surgery, although technically a cure, is not necessarily a perfect option. Besides the usual surgical risks, J-pouch requires your small intestine to do something it's not intended to do. For some of us, that could mean 50 or 60 years.
James

21 yrs old, diagnosed severe pan ulcerative colitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Remission since 4 July 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 8 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...
"God bless Remicade!"


brian T1
New Member


Date Joined Mar 2008
Total Posts : 17
   Posted 4/7/2008 6:52 AM (GMT -6)   
I think surgery is a perfect option for people who have come to the decision that surgery will give them a better life than living with UC. Also whilst the small intestine was never meant to take on the role of the colon the evidence also suggest that it adapts with time towards this goal. Another example of the miracle that the body is, in my opinion.
Dx mild pancolitis 2006
Mesalamine - Oral & Rectal
Vitamins & Supplements
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 4/7/2008 12:10 PM (GMT -6)   
It took me two years of intense research and trial and error to find the correct combination of maintenance meds, dietary modifications and natural supplements to manage my condition. Since then, it's been pretty much remission all the way - approx. six or seven years - with only small blips on the radar when my diet gets too far off track.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal.
 
 

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