Discouraged

Amelia who has ColitisMeet Amelia:

Age 74,female, history of bowel trouble, able to work with it , affected by stressful jobs, food, insomnia, difficulty when visiting,. Had bowel resection 2006 for diverticulitis, would not solve IBS as Dr reminded me
Also have IC (take Elmiron, follow diet,mostly) Take Venlafaxine for depression, 75mg, mild dose,
Along with increasing urgency, frequency I began to see blood in the stools and bloody mucous this spring
Maybe happened briefly in fall but stopped. Saw family Dr in April, referral to surgeon, colonoscopy,he saw previous inflammation ( called it colitis)symptoms had improved by the time he saw me he did biopsys which were clear, no other probs not even hemorrhoids. In two month symptoms were back, saw my Dr who prescribed 5-aminosal AC EC 400mg 3x daily, also referred me to gastroenterologist… who kindly saw me quickly, said I did not have classic case of colitis but a less severe variation. Prescribed Salofalk, said to continue oral med. I have used it with difficulty 3 nights,cannot retain it more than an hour, even using a lesser amt. Now have worse blood in stools, much more mucous, fatigue, Hemorrhoids and feel frightened and discouraged. \have surgery for kidney tumor Nov 19.

My Symptoms:

increased blood in stools
increased bloody mucous
fatigue
frequency
incomplete evacuation
urgency

Amelia’s Colitis Story:

A long history of trouble with my bowels and attempts to hide it so that I could manage my job. At that time which would be 20 years ago the trouble took the form of urgency and very loose bowel movements. I always carried baby wipes to clean up and often needed a change of clothing. Difficult when bathrooms were used by so many.

  • I am wondering if others have seen an increase in symptoms when starting Salofalk?
  • Anyone taking 5-aminosol AC EC?
  • Anyone taking both?

A flare will start or bad night of gas, cramps , bowel movements running the full cycle from constipation to loose movements, IF I ate meat, fat, spicy, gassy vegs, raw vegs, . Sounds like the IBS at work.

Now have a very restricted diet, fish, eggs mac and cheese, chicken, cooked squash, carrots, green and yellow beans, potatoes and bread. I eat small meals, use butter and cream in my coffee (an early morning treat) handle homemade desserts okay. Bran is too harsh, even whole wheat bread, oatmeal bread seems the best.

The urgency has been a problem this year, leave home and have to go back or stop at service stations on way to the nearby town, sometimes have to run in the woods!

I have been a member of Recovery for years and find the tools and other members helpful.
I have a church family and two strong woman’s group for support. I have a wonderful kind husband who helps me with everything, my daughter is caring and would be with me whenever I asked. My son has opened his home for us when we go to the city for medical reasons. I have a large extended family who write, email, phone.

Where I’d like to be in 1 year:

Without bowel problems
To have had successful surgery on kidney
Feeling better

Colitis Medications:

Just getting started on medication for inflammation/colitis. No success yet
Find the Salofalk hard to use, condition worse since I started,

written by Amelia Grace

submitted in the colitis venting area




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salofalk

2 Responses to Discouraged

  1. Andy October 17, 2012 at 7:09 am #

    Hi Amelia,

    The salofalk and 5-Aminosal are technically different forms of the same medication(mesalazine or 5-ASA).

    That said, I was on oral Pentasa(a mesalazine brand) for about 4 years, and during a recent flare I was put on the max dosage for a few months, and my symptoms seemed to get worse and worse. After a while I missed a day or two of pentasa because the pharmacy was out(I was still on pred anyway). My symptoms especially diarrhea and urgency reduced by 50% immediately.

    The doc said that sometimes people can develop sensitivity or some sort of immune reaction to the resins used to help the ingredients reach the gut. She switched me to oral salofalk granules, and I was fine. I wound up with a few boxes of pentasa a while after, and even now if a take them for a few days I notice a very particular feeling in my gut, and definite increases in urgency.

    Cheers,

    Andy

    • Adam (not from the site) November 23, 2012 at 1:54 pm #

      Andy,

      For the past 3 months my gastro put me on a nightly dose of Salofalk, and 8 pills a day of Pentasa. It was working for about 2 months, and now I’m back into a flare. It’s not a particularly bad one since I’m only going to the bathroom 3 times a day, sometimes only 2…however I am seeing a little bit of blood in my stool along with mucous. The past couple days I’ve seen no blood in the toilet, but when I wipe most of the time there is some on the paper. I don’t have diarea exactly, but coming out in small chunks. It seems like all this medication I’m taking is all for nothing and I’m constantly worried that it’s not going to get better. I switch my diet to see what happens, and no difference at all.

      Has this happened to you? Any advice.

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