New here--Questions about treatment options

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Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 4/8/2009 2:58 PM (GMT -6)   
I was diagnosed 2 years ago (at age 40).  I initially was on Asacol.  Developed a terrible bleeding rash around my groin area.  Dr. said it wasn't the Asacol.  Went to allergist..he said to go off the Asacol and if the rash went away, then it was probably Asacol.  Did that and the rash eventually went away.  Had a flare about 6 months later and dr. asked me if I wanted to try Asacol again (he still wasn't convinced it was the Asacol).  I tried it and the rash came back.  I switched drs. and he put me on Balsalazide Disodium.  Have been on this since October.  I have had terrible gas and bloating the entire time.  I have diarrhea and cramping at least once a week and have to run to the bathroom.  Two weeks ago I was put on Prednisone for a hurt knee.  For the 1st time in so long I felt great (except for feeling a bit edgy from the Prednisone).  No bloating, gas or diarrhea.  I'm off now and back to feeling bloated, etc. 
 
I am interested in trying this spinach and sunflower seed diet and maybe probiotics.  I have a call in to my doctor to see what he says about other options.  Since I have mild UC, I don't want to try any of the hard core meds...is it safe to go off meds and try this diet?  Any other suggestions as far as meds.  I am allergic to sulfa so I can't take Sulfasalazine.

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 4/8/2009 3:20 PM (GMT -6)   
Rowasa enemas--years ago, when my UC was still "mild" all I needed was a good enema nightly.  I had no side effects from Rowasa BTW.

AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 4/8/2009 3:32 PM (GMT -6)   
I guarantee your GI is going to want you on something.
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/8/2009 3:36 PM (GMT -6)   
No harm in trying the diet and the probiotics, I suppose!
I'm not familiar with B D. No surprise prednisone helped, maybe you can do course of it for a longer while and see if it resolves the symptoms, although your case sounds mild (but not easy when you have those episodes, I know).
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Flaring, seasonal? Back on prednisone, tried to taper but now back up to 30 after several really bad days. Humira denied, waiting for approval to start Remicade. 


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/8/2009 5:32 PM (GMT -6)   
Sometimes (acutally all the time) i wish that one of these "amazing" drug companies can make a drug like prednisone that doesnt have all the nasty side affects because it's an amazing drug when it comes to UC. 
 
I've been trying the spinach and sun flower seed diet for about 2 months and havent seen much benefit from it.  I dont know if its because im not eating enough spinach (about a fozen block a week).   I've also been trying the metamucil wafers with no effect.  I just started probiotics about a week and a half ago but cant really tell if it has done anything yet.
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 4/9/2009 6:16 AM (GMT -6)   

Thank you for all your replies.  I still haven't heard back from the dr.

Shadam...yes, I wish prednisone could be made safer, too.  I went on it for my knee and it cleared up a lingering cough I had for over a month, my knee and my UC. 

Peety--that is the generic for Colazal.  I know it can make UC worse in some cases and gas and bloating are a side effect.  I don't know if my symptoms are from the Colazal or from UC (or from IBS for that matter).

I have tried the Rowasa.  I did get a rash from it, too, so I don't know if it's the mesalazine I am allergic to. 

One thing that worked was Proctofoam a steroid that was administered rectally.  I just can't use it long term.

I think I will go to Whole Foods and Trader Joe's today and get some foods that were recommended.

One last question...if I'm mild and have only had 2 flares in my life (because I was diagnosed at 40), what is the danger of not going on medication except for the fact that I have a higher risk of having a flare.  If I have a flare without medication, will it make the UC worse in the long-term?  I don't want to do any more damage to my body, but I also don't want to be on drugs that affect my immune system.  I work with special needs kids and am always getting sick...I can't imagine being on drugs that would make me even more susceptible to illnesses.  However, I can't be running to the bathroom all the time either because of the type of kids I work with.

Thanks again...I know that I am blessed to only have mild UC when I know most of you are suffering so much more.  Thanks for taking the time to help me.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/9/2009 7:19 AM (GMT -6)   
By not taking maintenance meds for UC you not only run the risk of having a flare but also increase your risk for colon cancer. It's the inflammation that changes the cells of the colon and if you don't keep that at bay you put yourself in a higher risk pool. I would also assume that you increase your risk for a more severe flare too but I don't know that for sure.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 4/9/2009 10:47 AM (GMT -6)   
DN66;
I'll throw my hat in the ring with what seem to be many good suggestions from experienced and distinquished UC patients.
I was diagnosed in '98 and like your diagnoses, my UC started with a wimper not a bang. A little blood in a solid stool, a mild cramping, etc. Those were 'the good ol' days' when a suposotory and a min. of Asacol kept me relatively healthy. My first GI gave me - what now seems like a self-fulfilling prophesy, he said, I think you are going to experience worse flair-ups. Fast Forward, I'm now on some of the heaviest drugs like my fellow patients, and have plenty of 'war stories' with UC.

I like success stories, hopefully you'll never have a severe flair-up, but I'm in agreement with SueBear's comment. Your next flair could go from bad to worse quickly. Think positive...but even in times of calm, be prepared to do battle against this disease.
Daily: 100mg Immuron, 6x400mg Asacol.
Monthly: inject 400ml CIMZIA
5-lac Probiotic, Spinach and Sunflowerseed Diet,
Omega Oil, Flaxseed Oil, daily vitamins, strictly no alcohol.
Prayer.


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 4/9/2009 11:11 AM (GMT -6)   
My sister has UC for about 10 years. Hers was really bad at first, Took Asacol for a while, then she finally slowed down and stopped taking them. Right now, she still gets short quick flares that go away quickly, hardly takes any Asacol for it. Makes no sense to me, she eats fiber and all that. She smokes, which apparently helps with UC.

Asacol worked good for me for about a two months then gave me pains in my side by my kidneys, and seem to stop helping. I switched to Colazal, don't seem to get the side effects from it, still not sure if it helps or not yet.

If you worried about colon cancer they say to take Folic Acid to help prevent it.

Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 4/9/2009 11:13 AM (GMT -6)   
Iflyfish said...
DN66;
I'll throw my hat in the ring with what seem to be many good suggestions from experienced and distinquished UC patients.
I was diagnosed in '98 and like your diagnoses, my UC started with a wimper not a bang. A little blood in a solid stool, a mild cramping, etc. Those were 'the good ol' days' when a suposotory and a min. of Asacol kept me relatively healthy. My first GI gave me - what now seems like a self-fulfilling prophesy, he said, I think you are going to experience worse flair-ups. Fast Forward, I'm now on some of the heaviest drugs like my fellow patients, and have plenty of 'war stories' with UC.

I like success stories, hopefully you'll never have a severe flair-up, but I'm in agreement with SueBear's comment. Your next flair could go from bad to worse quickly. Think positive...but even in times of calm, be prepared to do battle against this disease.


Why would your doctor say you are going to experience worse flairups?

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 4/9/2009 11:17 AM (GMT -6)   
     Iflyfish....what is Cimzia?  Not familiar with it.
 
     Zippy....I heard a report that Folic Acid does not protect one from cancer at all and too much may cause more harm than good.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 4/9/2009 11:29 AM (GMT -6)   
Christine1946 said...



<FONT color=#800080> Zippy....I heard a report that Folic Acid does not protect one from cancer at all and too much may cause more harm than good.


Thanks for that heads up Christine.

JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 4/9/2009 11:38 AM (GMT -6)   
I was diagnosed with UC in 1981. I have tried all medications (except for the anti TNF class) and I too am allergic to sulfa medications. My flare right now is becoming mild. Until this past December, I was on a 6-mp drug that helped to calm my flare but was not putting me into remission. I have completely stopped all medications because I was feeling toxic and decided to take a natural approach. In short, I take omega -3 fish oil, probiotics, bee propolis and tumeric everyday, along with acupuncture once a week and I am slowly seeing results. I feel better than I ever had on any medications despite the fact that achieving remission seems slower than traditional medications. Also, after 28 years with this disease I do not fear colon cancer. Having a colonoscopy every two years is sure to pick up on any pre-cancerous cells that are forming. I feel very well monitored.
Good luck whatever your decision.
 


Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 4/9/2009 2:09 PM (GMT -6)   
Zippy123;
I'm on my 3rd in 11 years and happy with this board certified GI surgeon I see now - he's great.
The first GI doc I saw predicted from my 1st coloscopy, what he saw and biopsied, that things would likely get more serious.
He was correct.
Daily: 100mg Immuron, 6x400mg Asacol.
Monthly: inject 400ml CIMZIA
5-lac Probiotic, Spinach and Sunflowerseed Diet,
Omega Oil, Flaxseed Oil, Oil of Oregano, daily vitamins, strictly no alcohol.
Prayer.


Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 4/9/2009 2:16 PM (GMT -6)   
Christine;
You can research CIMZIA at www.cimzia.com. It's a relatively new med, 1st developed for Crohns. Recently approved for UC patients. It's injected subQ, once a month. I am still having UC symptoms, but managable - I am not yet non-symptomatic. I am hoping and praying that my doctor is correct, that I should reach remission in another month or two.
Daily: 100mg Immuron, 6x400mg Asacol.
Monthly: inject 400ml CIMZIA
5-lac Probiotic, Spinach and Sunflowerseed Diet,
Omega Oil, Flaxseed Oil, Oil of Oregano, daily vitamins, strictly no alcohol.
Prayer.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 4/9/2009 2:22 PM (GMT -6)   
     Is it on the same order as Remicade then?
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 4/9/2009 4:04 PM (GMT -6)   
Christine;
I'm not qualified to answer exactly how it is similar or varies from Remicade, other than the obvious, that you inject it. I will say that my GI seems impressed with the results in MOST of his Chrons patients.
Daily: 100mg Immuron, 6x400mg Asacol.
Monthly: inject 400ml CIMZIA
5-lac Probiotic, Spinach and Sunflowerseed Diet,
Omega Oil, Flaxseed Oil, Oil of Oregano, daily vitamins, strictly no alcohol.
Prayer.


Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 4/9/2009 4:08 PM (GMT -6)   

I went to Whole Foods where I bought a lot of stuff.  Kefir probiotic, sunflower seeds, spinach, sunflower seed butter, etc., etc.  My husband drank a lot of the Kefir (I told him to not to drink more than 1 cup like it says) and he had to run to the bathroom at a store we were at.  Ha, ha...maybe now he'll understand how it feels now.

My dr. called back but I missed the call so I'll call back tomorrow.  I think I'll try the diet along with the meds. I'm already on and see if I have an improvement with my symptoms.  It seems there is no real wonder drug out there. 


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/9/2009 6:55 PM (GMT -6)   

Jingle Bell,

I noticed that you said you were diagnosed with UC 28 years ago.  Have you seen any improvement or change in treatment for UC since you were diagnosed. 

I'm PRAYING that 28 years from now, there will either be a miracale drug that works for everyone and has no harmful side affects or that there will be a cure!!


Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


MiaVT
New Member


Date Joined Dec 2005
Total Posts : 7
   Posted 4/9/2009 7:16 PM (GMT -6)   
I am back on these Boards after an extended absence!  I was dx with UC in 1995 when I had an episode of Clostridium-Dificile that became CHRONIC.  NO GOOD.  2 of the neurotoxins generated by that infection are quite deadly.  And while having it, you certainly WISH you were dead!
 
I was referred to a Gastro right away.  Nobody else wants to deal with highly contagious "gut" diseases!!!  When the CD kept returning after repeated treatments of course I had a sigmoidoscopy, then a colonoscopy--which revealed Diverticulitis & UC.  Yay.  THAT was why my intestinal immunities could not straighten out and "get well".
 
After a couple of other treatments (one a resin that you drink), that made me incredibly ill, I was put on Asacol 800mg 3x a day, Reglan 3- 4x a day (? dose) for spasms, and Prevacid to shut down my stomach acid production--just give the whole thing a break.
 
I MOVED to SC a year ago and my Primary Care Doc yanked me off the Reglan because he was afraid it would cause a movement disorder, Tardive Dyskinesia.  Well, I'd been taking the med for 14+ years and it did nothing but help me.  I was PI$$ED, but he would not listen.  So I have a lot of gut PAIN now.  I'm treated for a different Pain Disorder though, and have "extra" meds for when it gets REALLY bad.  Honestly, once or twice a month--I end up taking some because of my gut pain!!!
 
Anyway, wouldn't it be nice if they came up with something new that could make us feel really GOOD???
 
Marti
DangoVt

"When I stand before thee at the day's end, thou shalt see my scars and know that I had my wounds and also my healing"~Rabindranath Tagore

 

DISORDERS:  Osteoarthritis; Degenerative Disc Disease (degeneration at C- 2 to 4 with Osteophytes, T- 8 to 12; L-4 &L-5); Facet Joint Disease through out; Spinal Stenosis; Neurogenic Claudication; Anterior Displacement at the L-4/L-5 site; De Quervain's tenosynovitis of the wrist; Ulcerative Colitis; Diverticulitis; Chronic Clostridium Difficile; Irritable Bowel Syndrome

 TREATMENTS:  3 Radiofrequency denervations (Thoracic/Lumbar Facet Joint Nerves); 2 Epidurals (Cervical Herniations, Cervical Facet Joints)

 MEDICATIONS:  MSContin ER 60mg 2x; Morphine Sulfate IR 15mg 2x prn; Naproxen 500mg 3x; Tizanadine 2mg 1- 3 at bedtime, 1- 2 2x daily; Clonazepam 1mg; Wellbutrin 400mg; Lexapro 30mg; Topomax 100mg; Provigil 200mg, 2x; Metoclopramide 20mg, 2x; Asacol 400mg, 3x

 


JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 4/9/2009 7:43 PM (GMT -6)   
Shadam

I think the greatest improvement I have seen over the years has been doctors attitude towards the treatment of UC. I was diagnosed when I was 8. Not many doctors in the area that I grew up in were familiar with this disease afflicting children so their treatment of me was not very kid friendly. When I was between 10-12 I had a doctor who thought the only cure for UC was to give me very high doses of prednisone and then blamed my parents for moving me too much when I was young. Now I have a doctor who truly wants my input and is willing to work with my alternative healing methods.
The drugs have become better because technology allows us to better understand the condition, especially on a genetic level. (Secretly, I'm hoping that technology will eventually allow us to build new colons.)
So yes, there have been great improvements and I hope that it only keeps getting better.
 


Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 4/13/2009 12:50 PM (GMT -6)   

Just a little update.  I have been on this diet for only 4 days I believe and it has made a huge difference.  I have lost 3 pounds...which is all water weight because I was so bloated before.  I feel so much better.  I don't know if it's the probiotics or the anti-inflammatory foods or a combination of both, but it's working.  The doctor prescribed more Proctofoam and told me to use it when I had these symptoms (which was all the time before the diet so I would have been using it all the time) and I haven't had to use them at all.  I told the doctor I was trying this.  No real comments there from him.  It has helped with my headaches and hayfever, too.

I was worried that eating a lot of stuff on Easter would make me sick, but it didn't.  I ate lots of berries and drank my Kefir and I was fine.

Also, I did stop drinking coffee.  I started drinking coffee when I started the Colazol because the med. made me really tired and I needed the caffeine.  I'm still a bit tired, but I think eliminating that really helped, too.

Anyway, if anyone hasn't tried this diet, I would suggest it.  I don't think it can hurt...it's all really healthy stuff.

Thanks for all the help!

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