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Ulcerative Colitis
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Posted 11/17/2010 3:40 AM (GMT 0)
Hi! I'm a 25/f. I was diagnosed Oct 2009. I started having symptoms in March 2009. I have been on a lot of different meds since. My first colonoscopy showed that I had proctitis, a 3 cm area, that was Oct 2009. I had my second colonoscopy Nov 2010 and it showed that I have proctosigmoiditis, a 15 cm area is affected now. I'm currently on Lialada 2/day, enemas 2/day, steroids-currently 10mg, and suppositories 2/day. I haven't really known normal since I started having symptoms last March. I have internal and external hemorrhoids. They are pretty bad. They bother me more than the UC. I can't find a lot online about hemorrhoids and UC together. I need advice!! I don't know how much more I can handle! I'm going to the doctor in 2 days for a check-up after the last colonoscopy. I want to go informed so I know what to ask. I've always just done what the doctors have told me to do, but nothing is working, it's just getting worse. I'm thinking about asking about Remicade, but I'm open to any advice anyone has for me. I haven't changed my diet either. I know that's something I need to work on but I just don't know where to start. I feel stupid when it comes to this b/c I don't know much about it and don't know where to start! I can't even take care of my kids b/c I'm in so much pain all the time or in the bathroom. I need help/advice!! Please help!! Sorry so long!!
Posted 11/17/2010 4:22 AM (GMT 0)
What are your symptoms? You say the hemi's bother you more than the UC. How are you distinguishing the two? Hemorhoids are not specifically linked to UC but you are certainly entitled to suffer from both. Lucky you..It sounds like your GI has you on a pretty decent coctail of medications. Lialda tends to penetrate distal colitis better than some of the other mesalamine formulatons (like Asacol). You are taking 2 a day. Your GI might suggest increasing the dose of Lialda or increasing the dose of the prednisone. Remicade is a big step to take. It can be very helpful and many members of this forum will attest to that but it does come with its risks. I would seriously consider changes in diet and consider using a probiotic. I have found the Specific Carbohydrate Diet (a book by Ellaine Gottschal)l and the use of VSL #3 probiotic to be very helpful to me. You might decide to add these dietary changes to the medications you are already on and the combination might bring you into remission. I started Remicade very shortly after my initial diagnosis as none of the convential medications worked for me. It was very helpful but I also suffered some pretty severe side effects. I wish I could go back in time knowing what I know now but hindsight is 20-20.
Posted 11/17/2010 1:01 PM (GMT 0)
Welcome to Healingwell. What sort of enemas are you using? Mesalamine or Hydrocortisone enemas? Same with the supps...which ones are you using? I have internal and slightly external hemmies that tend to act up when I flare from my Uc. I find that the steroid enemas help both at the same time. And during the day, I use a steroid hemmie cream with an insertion nozzle in which I use after my morning bm's.

Before jumping to Remi, there are other options you can try in regards to switching around the 5-ASA meds such as your Lialda. You can try Apriso or Colazal. I have left sided Uc and Colazal seems to work better for me then when I was on Asacol. Also, if these fail you as well you can try an immune suppressing medication such as 6mp (mercaptopurine) or Imuran. Usually Remicade or Humira is reserved if all else fails.

I suggest you go to our resource section and read up on Uc as well as visit www.ccfa.org. These areas have a wealth of information.
Posted 11/18/2010 2:36 AM (GMT 0)
napacabs-My symptoms are bleeding, which has never stopped, i have blood w/ a bowel movement and gas, i will go days w/o a BM and then spend a day or two in the bathroom, which makes the hemmies worse, and just pain. I recently went a little over a month w/o a BM and that's when the doctor put me on the steroids. She started me off on 40 mg and has had me lowering the dose every week, till i got to 10 and i've been there for 2 weeks or so now. I am also on a steroid cream.

I can't say for a 100% that the hemmies are caused by the UC but I def. think so. I have the urge to have a BM but nothing happens so I strain. I try my best not to but I just can't seem not to. So I think if I didn't have the hemmies then I would be able to handle the UC better. I wouldn't be in as much pain and I would be able to do everyday tasks instead of being in the fetal position all day in bed.
Posted 11/18/2010 12:25 PM (GMT 0)
Hi and welcome to the forum!

I'm sorry for your troubles.
Have you ever tried a fiber product? Years ago when I was first diagnosed my GI recommended I take Metamucil to prevent that unproductive straining. I found it helped a lot, and I've taken it ever since. Benefiber is one recommended by my son's GI. Unless one is sensitve to the psyllium (we are all different...) I've found it helps to clump the bm's, add bulk to prevent that sort of involuntary straining, and it softens the b,s some so that might help with the hemmie pain.... and it might even you out so you don't skip days and then have these marathon bathroom days.

Keep us posted!
Posted 11/18/2010 12:57 PM (GMT 0)
Hi hnhn

sorry to hear how bad your UC is.
The 3 things I'll repeat (as mentioned) you should begin are:
1-Rowasa (generic name=mesalamine) enema every night.
It won't be easy in the beginning to retain them but keep trying.
2-Probiotics-VSL#3 is most mentioned here and has done well by me
3-Diet modification-Remove wheat and dairy to start and consider the Specific Carbohydrate Diet.
It is challenging to change your diet but it could mean getting your life back.

#3 has been the most important reason for my improvement but it took a while to discover ALL the different foods that caused my colon distress. Try eating just protein (meat,fish) and low starch veggies for a couple days as well as chicken broth and lots of water daily. It's healthy and can help you get energy back. Keep carbohydrates and sugar out as much as possible. Try it and see if you feel a little better.

Best wishes.
Posted 11/18/2010 3:55 PM (GMT 0)
songlady-i have tried fiber products but they give me diarrhea, no matter how much i take

thank you all so much for all the info...i feel better about going to my doctor's appt today, i feel like i know what to ask now
Posted 11/19/2010 6:51 PM (GMT 0)
well the doctor wants me to do cort enemas now, along w/ everything else. if these don't work then we will probably start the remicade. i'm also going to switch my diet.
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