At the end of my rope.

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Bytor
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 3/11/2009 7:30 PM (GMT -6)   
This is terrible.
My Doc. says this is the best he can do without being admitted.
I'm on a hell of a lot of drugs and nothing is working.
 
 
 

40 yo male
UC diagnosed in 1989
On and off every 5 years or so.
Having the worst bout yet.
Several Months now. May have happened when I quit smoking almost a yesr ago.
 
60 mg Prednizone (a lot yes?), 4 Asocol pills 3x day, Cortenemas (stopped-not staying) ,
Remicaide (3rd dose next week.) Probiotics 1 pill/day, Commit Lozenge (stop smoking)
Nothing is working.
 SCD Diet,no caffeine, no alcohol
Bathroom many times a day, blood, gas,diarrhea
Most miserable time in my life.
Going to see some nurse practicitioner about bloodwork up in New Hampshire.


happyliving
Regular Member


Date Joined Mar 2008
Total Posts : 166
   Posted 3/11/2009 7:48 PM (GMT -6)   
Hi Bytor,

Sorry to hear that you are suffering a lot.
Why don't you try to increase the intake of Probiotics.
Try to get rid of any specific food which bothers you much and eat lot of Yogut to relax your gut..
Take care and keep us posted

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/11/2009 7:53 PM (GMT -6)   
Could you try a liquid diet for a bit and give yourself some gut rest.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16731
   Posted 3/11/2009 8:40 PM (GMT -6)   
Do you use rectal meds? I would think with Remicade you wouldn't need to but maybe it is worth a try.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/12/2009 9:33 AM (GMT -6)   
Surgery??? If you're that miserable (& it sounds like you are!), & none of the big drugs are working, why not? 60mgs of pred is high, but I've always started at that dose myself. It did work great the first time, but then lessened with every course. Thankfully, the Remicade is keeping things in check for me right now- barely, but good enough for me! What does your doctor say, they must'e brought up surgery to you at this point. What would he do for you in the hospital, IV steroids, cyclosporine???

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Primal Defense Ultra
Fiber supplement
 
 
 


Bytor
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 3/12/2009 9:51 AM (GMT -6)   
I guess the dr. is suggesting and IV drip as well as liquid diet.
I really just don't want to have my colon removed.
I'm a bit scared. I have a meeting with him tomorrow.
I'm just not sure of what other surgery alternatives there are.
 
40 yo male
UC diagnosed in 1989
On and off every 5 years or so.
Having the worst bout yet.
Several Months now. May have happened when I quit smoking almost a yesr ago.
 
60 mg Prednizone (a lot yes?), 4 Asocol pills 3x day, Cortenemas (stopped-not staying) ,
Remicaide (3rd dose next week.) Probiotics 1 pill/day, Commit Lozenge (stop smoking)
Nothing is working.
 SCD Diet,no caffeine, no alcohol
Bathroom many times a day, blood, gas,diarrhea
Most miserable time in my life.
Going to see some nurse practicitioner about bloodwork up in New Hampshire.

I no longer fear hell because I have UC.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/12/2009 10:13 AM (GMT -6)   
Your surgery choices are: permanent ostomy, k-pouch, or jpouch. When drugs failed me I made a list of pros and cons of each surgery and made the choice of a jpouch; it fit my active lifestyle best. At age 42 I had a 2-step jpouch surgery. This was the BEST darn health decision I have ever made. I was IMMEDIATELY better once the colon and rectum were removed. I went on a hiking/camping trip 6 weeks post surgery and traveled through Europe 3 months after surgery and at 6 mos post sugery I did a half marathon. I haven't stopped since and have done 100-200 mile international hikes. The possibilities are endless now and I have been able to make commitments and keep them. Truly I feel blessed.

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


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 3/12/2009 1:17 PM (GMT -6)   
A predigested liquid diet has been shown to be as effective as steroids in achieving remission. The books The New Eating Right for a Bad Gut and The IBD Remission Diet both cover liquid diets using different products, if you're interested in learning more.

Just curious, have you worked with more than one gastro doc? Different docs sometimes have different approaches or may be able to bring something new to the table.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/12/2009 2:30 PM (GMT -6)   
So sorry you are suffering and having such anxiety about what is next. Read the posts from folks who made the surgery decision (there are many posts right from the hospital), everyone is very positive and even excited about the freedom they have ahead because of it!
Good luck keep in touch.

supersaw, go away. Not helpful or funny.
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), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/12/2009 3:12 PM (GMT -6)   
     Has your doctor suggested Imuran or 6MP?  Worth a shot.
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.


Bytor
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 3/12/2009 3:18 PM (GMT -6)   
Thanks you all very much.
I have lots to consider.
Don't be too hard on the saw.
Fries and chili and beer sounds sooooooo good right now.
 
40 yo male
UC diagnosed in 1989
On and off every 5 years or so.
Having the worst bout yet.
Several Months now. May have happened when I quit smoking almost a yesr ago.
 
60 mg Prednizone (a lot yes?), 4 Asocol pills 3x day, Cortenemas (stopped-not staying) ,
Remicaide (3rd dose next week.) Probiotics 1 pill/day, Commit Lozenge (stop smoking)
Nothing is working.
 SCD Diet,no caffeine, no alcohol
Bathroom many times a day, blood, gas,diarrhea
Most miserable time in my life.
Going to see some nurse practicitioner about bloodwork up in New Hampshire.

I no longer fear hell because I have UC.


VerM
Regular Member


Date Joined Feb 2009
Total Posts : 101
   Posted 3/12/2009 3:21 PM (GMT -6)   
Chili does have kiddney beans which are high in mag...
I will not be passive.  I will fight until I win.  -VerM


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 3/12/2009 3:28 PM (GMT -6)   
I'm sorry to hear you are going through such a bad episode. :( Have you tried taking aloe vera supplements? I have heard they are a natural healing agent - but don't quote me on that. I just know its good for you and is supposed to help. I'm considering them myself, as I am on Remicade and that is barely keeping my symptoms in check....
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (full colitis)
Medications: Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions (started Aug 2008 - 4 infusions so far, next infusion on 1/8 continuing every 8 weeks); Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate)
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements


James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/12/2009 6:56 PM (GMT -6)   
geminisunset said...
I'm sorry to hear you are going through such a bad episode. :( Have you tried taking aloe vera supplements? I have heard they are a natural healing agent - but don't quote me on that. I just know its good for you and is supposed to help. I'm considering them myself, as I am on Remicade and that is barely keeping my symptoms in check....


O. i think they helped me with bleeding and inflammation because it heals the leaky gut or damaged intestines.
I drink one after waking up after day and since drinking them for a couple of weeks now consistently I have been having only 1 bowel movement a day but sometimes 2-3 if I eat my favorite heavy sugary oatmeal at night.
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. still crapping out yeast.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, garlic, aloe vera

in semi remission


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/12/2009 9:39 PM (GMT -6)   
bytor-60 mgs of pred is alot, and i am suprised they would leave you on such a high dose for very long, that's some evil stuff!
Coming from someone who had surgery, its the most awesome thing EVER!!! Much more convenient than going to the bathroom the regular way, even pre UC, lol.
I opted for a perm ileo, and it's really not bad at all.
If your UC get sso bad that its not controllable by meds or you are pred dependent the dr will probablly suggest that for you

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 3/12/2009 10:45 PM (GMT -6)   
If the doc wants to admit you then do it...hopefully once there they will find a better treatment for you. Hope you feel better soon.
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 3/16/2009 6:13 PM (GMT -6)   
May be a shot in the dark, you could try that VSL 3 super pro-biotic, its expensive, but apparently it has actually snapped people out of a flare in very high doses. The stuff is expensive to buy outright. If there is almost no other hope, it may be worth a try over surgery. I'm not positive, but I think them steroids can possibly mess up your good bacteria in your colon like antibiotics.

Bytor
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 3/16/2009 6:43 PM (GMT -6)   
Thanks,
I just started taking the IB Probiotic a few days ago. I'll see how it goes.
40 yo male
UC diagnosed in 1989
On and off every 5 years or so.
Having the worst bout yet.
Several Months now. May have happened when I quit smoking almost a yesr ago.
 
60 mg Prednizone (a lot yes?), 4 Asocol pills 3x day, Cortenemas (stopped-not staying) ,
Remicaide (3rd dose next week.) Probiotics 1 pill/day, Commit Lozenge (stop smoking)
Nothing is working.
 SCD Diet,no caffeine, no alcohol
Bathroom many times a day, blood, gas,diarrhea
Most miserable time in my life.
Going to see some nurse practicitioner about bloodwork up in New Hampshire.

I no longer fear hell because I have UC.

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