Worried...no medication works.

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qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/3/2009 5:57 AM (GMT -6)   
Hi, just looking for anyones opinion on my situation...
 
I was diagnosed with Proctitis/Colitis after a rigid sigmoidoscopy in Jan 08 due to blood and mucous in stools. Over the last year my symptoms haven't alleviated for longer than 2/3 weeks no matter what medication I have been put on. (colifoam, enemas, suppositories, steroids etc) I have had quite a bad flare up since Nov 08 and have lost blood most days. I then had a flexi sigmoidoscopy 3 weeks ago which showed the inflammation of the rectum as severe, and also a small amount of inflammation further up, but nothing of significance that they didn't already know about. Anyway nothing was getting any better so when I saw my consultant last Mon he advised I go into hospital for intravenous steroids and bed rest for 7 - 10 days.
Anyway I was admitted to hospital on Friday...by yesterday the steroids were still having no effect so the doctor told me to go home, and said that he reckons I am bleeding from elsewhere...so he has booked me in for an urgent colonoscopy.

I then went to my GP and she has signed me off work for 2 weeks...and she also said she thinks I've been wrongly diagnosed as it is not normal to not respond to this amount of different types of medication. She said shes sure the colonoscopy will show up something else but shes not sure what. I'm really worried about what exactly might come up. Is it really unusual to not respond to that amount of medication and still be losing so much blood? What could they actually find up there, I mean is there a possibly they might find a lump or something that is bleeding?

Any thoughts?? Thankyou.

sore_guts
Regular Member


Date Joined Jun 2007
Total Posts : 185
   Posted 2/3/2009 6:59 AM (GMT -6)   
I'm surprised you were released from the hospital after only 3 days on steriods.  I've not had experience yet with IV steriods, but with the last flare I came close and my Dr said to be prepared for 5 - 7 days in hospital.  I dont respond to oral pred until 7 days on high dose.  And many of the other meds can take awhile before they begin to work.  You mention rectal meds, have you been prescribed any oral meds as well?  Sometimes the combo of the 2 can work together.  Our bodies vary so much in how quickly meds work or which ones work that I think sometimes the Docs dont give them all a fair chance before moving on to another.

 sore_guts
 
Currently in Remission since June 2008!! Flaring again :(
 
High magnesium/ beta carotene diet
37 year old female with left-sided UC
lialda 1 pill  3 2 times/day
Digestive Advantage Colitis formula 1/day
 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 2/3/2009 7:47 AM (GMT -6)   
Have they offered you more options like IV medication (Remicade)?
26 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/3/2009 8:14 AM (GMT -6)   
Thankyou for your replies...yep they have been putting me on a mixture of rectal aswell as oral medication. At one point each day I was taking 6 x 400mg Asacol mesalazine tablets, 1 dose of colifoam, 1 suppository, and 1 enema. That didn't seem to do the trick for very long! What seems to happen is they start to work and then just seem to stop working, or they just take no effect in the first place. I was put on 40mg oral prednisolone, (plus taking the Asacol tablets) at the beginning of the year, gradually reducing the dose down by 5mg a week, and they didn't do anything either. Which is why the consultant advised me to go into hospital for IV steroids (Hydrocortisone I think).
 
Does that make more sense?!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/3/2009 8:24 AM (GMT -6)   
Contrary to what your GP says, many people are resistant to medical treatment. This is not uncommon, maybe uncommon to him or her but it happens. I had serious UC of the rectum and lost my colon and rectum do to the disease. I bled daily for over 2 years but steroids did keep me functioning. The rectum can be challenging to say the least. I hope you are able to get this flare under control.

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


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 2/3/2009 8:29 AM (GMT -6)   
The IV steriods take a bit longer to work for us, so I too am surprised they let you go so quickly. My daughter had a hard time on the pred/Solumeddral(sp?) Our GI doesn't like to go in for a Colonoscopy when there is remarkable bleeding and inflammation. It can be dangerous when the colon is so fragile--make sure you get a highly experienced person doing the procedure. What bloodwork have you had? They can tell most things from other markers, rather than going in for an invasive Colonoscopy. Have they discussed 6mp? It takes longer to get you into remission, but works for some. It might be time for a second opinion--looks like you have tried the first line stuff. We too, were diagnosed one year ago, and have had very little success. Now on Remicade, and it seems to be working. Don't give up, stay on a low residue diet for awhile, and go to the best doc's around.
Daughter,15 diagnosed 1-08 w/ UC .
Asacol, Prevacid, Flagyl, Prednisone 50mg, major flare, now off!, Hosp. four x this yr. Low residue diet still, an
6MP, Colazal ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Cortifoam enemas 4xweek
Trying probiotics, Niferex, fish oil, and Mangosteen for kicks.
update:
Had 4th infusion of Remicade(12-08), and still on all of the other drugs, except Flagyl and Pred. Better, no remission. In a drug trial for children. Living on a flare's edge.


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 2/3/2009 8:40 AM (GMT -6)   

Sue  - did you have the operation then?! What did they do...is that maybe something I am going to have to consider?!

And Katmom - I had a blood test when I was admitted to hospital on Friday and they never told me the results so I assume they were all ok. And excuse my ignorance but what is 6mp?

And regarding the second opinion - my GP has recommended I go for a second opinion depending on the results of the colonoscopy.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/3/2009 10:01 AM (GMT -6)   
Yes, I had jpouch surgery close to 8 years ago. Both the colon and rectum were removed and a false rectum (jpouch) was constructed out of 9 inches of small intestine. You should discuss your options with your GI; however don't be surprised if he/she balks at it. GIs tend to want to treat disease, surgeons tend to want to cut it out. Ultimately the patient has to decide for him/herself what's best for them. This is most often a difficult decision.

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


sore_guts
Regular Member


Date Joined Jun 2007
Total Posts : 185
   Posted 2/3/2009 11:24 AM (GMT -6)   
6 asacol pills is a low dose. That may seem like a lot of pills, but it could be increased to a max of 12 pills/day. Or there are other oral meds to try. It defintely sounds like there are other possibilities and maybe you were labled med-resistent to soon.
 sore_guts
 
Currently in Remission since June 2008!! Flaring again :(
 
High magnesium/ beta carotene diet
37 year old female with left-sided UC
lialda 1 pill  3 2 times/day
Digestive Advantage Colitis formula 1/day
 
 

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