The drugs just don't work! Please help

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Sottie
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/11/2009 8:54 AM (GMT -6)   
Hi all,
I've just joined today and have found lots of helpful info. However, all medication that I have ever had, has NEVER made one bit of difference.
I was diagnosed with UC in 2005 which they changed to Crohn's but still unsure. My main syptom is constipation although I can go to the toilet 10-20 times for a bm but only pass blood and mucus. It's been 13 days since my last 'proper poo' which actually wasn't very good at all. Each year since diagnosis I have had a flare up that's lasted about 6 months. Up until last year I took all medication given to me including steroids, enema in morn, 9 asacol during day and enema at night, tried other stuff too as none of that worked. In fact, nothing has ever worked so I stopped taking any medication! I felt like I was rattling for no reason! I've had movicol, lactulose, fibregel...nothing works!
I'm obviously uncomfortable and the pain, I know, will get worse. Has anyone ever had similar symptons?
HELP smhair

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/11/2009 9:01 AM (GMT -6)   
Have you been tested for slow transit motility disorder? Your level of constipation sounds more severe than what typical UC or Crohn's patients have. I would suggest you bring this up to your GI.

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 2/11/2009 12:56 PM (GMT -6)   
I'm wondering if you don't have constipation predominant irritable bowel syndrome - perhaps in addition to the inflammatory bowel diagnosis. If that's the case, these links might be helpful:

http://www.webmd.com/ibs/diet-solution-ibs

http://www.helpforibs.com/footer/constipation.asp?additem=DEALS_DIETKIT1

http://ibs.about.com/od/ibsfood/Helpful_Foods_for_the_IBS_Sufferer.htm


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.
 
 


Sottie
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/11/2009 5:12 PM (GMT -6)   
Hi, thanks for you replies, I do also have IBS which I have never been officially diagnosed with. I've not heard of slow transit motility disorder but I will certainly look into it. Thanks again

AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 2/12/2009 9:54 AM (GMT -6)   
Hi there I just thought I'd chip in I also suffer from constipation,and nothing has really helped,I've had movicol alot which makes me feel sick,I've also had bouts of running to the toilet with only blood and horrid stuff,I think you should be carefull as the last time this happened to me I had the toxic mega colon and ended up having to have cyclosporin the said I was literally hours away from needing emergency surgery because the whole of the linning of my bowel had started to break away.Anyway someone posted on here saying that sometimes when you are severely constipated its because the lower part of the bowel and rectum is so inflamed that the bowel almost refuses to let anything past a certain point it sort of goes into stalsis so you get build up which can in some case be like mine get really bad but I think that is in UC not crohns,only things I feel help at all now,are the Movicol,to keep add water to the stools so they dont become to hard,coffee,prune juice to encourage that horrid crampy feeling of everything starting to inch along,and avery watery diet of plenty of soups cooked fruit yoghurt,minimal carbs if you can , small amounts regularly every hour,plus water juice,and gentle walking probably the last thing you feel like,I know,also crazy as this might sound I sometimes find a drive in the car helps again the movment or vibration,or gently massaging your stomach in a circular movement then sitting upright on a chair tilted foward and rocking slightly backwards and forward so you can feel your pelvic bone moving.

sjptkd
Regular Member


Date Joined Apr 2006
Total Posts : 35
   Posted 2/12/2009 12:45 PM (GMT -6)   
You should get multiple opinions. I believe they have bood tests to help distinguish UC vs Crohn's. Also, if youa re flarring once a year for 6 months during that year, sounds like you should try remicaid or humira. But go see many Dr's. Its like a mechanic for your car. Also they told me I had a hemorriod at first................Um yea good job there lol. It was UC Dr.s
24M-buffalo ny
Ulcerative Colitis --- been sick for 10 months---
15 pills of asacol
75mg of 6MP ( waiting for it to kick in )
probiotics ( not sure if they are working )
Cort enemas
Mesalimine enemas ( both of which are hard to hold )
 
Remicaid here i come soon


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/12/2009 1:05 PM (GMT -6)   
Hey, I'm the same...except not so bad with the constipation side of things. Currently I am constipated but not to the extent that you seem to be, and it also fluctuates with diarhhoea sometimes too. I pass blood and mucous in 99% of my bowel movements, and sometimes it is just blood and mucous alone. I have tried all sorts of different types of meds for my Proctitis over the past year. But because for some strange reason in the whole time of my symptoms they have not once done a colonoscopy, I am having one done next week. I did not even respond to intravenous steroids in hospital and so they reckon maybe something else is going on, which is why they are giving me a colonoscopy. The GP said today that if it is just Proctitis but I am one of those that don't respond to medication then my GP said today that I might have to consider surgery :(

22 year old female, from the UK
 
Diagnosed with Ulcerative Proctitis Jan '08
Hospitalised Jan '09 for IV Hydrocortisone steroids - had no effect!
Waiting for Colonoscopy as no medication has worked effectively as of yet
 
Currently taking daily: 9 x 400mg Asacol tablets, plus Fybogel fibre supplement and vitamin tablet.


Sottie
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/17/2009 2:19 AM (GMT -6)   
Hey thanks again for replies, 18 days now without bm. I've left a message last week with my specialist IBD nurse so hopefully might get a bit of info today. Will keep you all posted. :}

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/17/2009 9:14 AM (GMT -6)   
Eighteen days?!? You need to see your GI asap. You could have some sort of blockage or other very serious situation.
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.
 
 

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