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One month of Salofalk enough to see true results?

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Ulcerative Colitis
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Posted 1/23/2017 11:39 PM (GMT 0)
Hi everyone,

Just posting because I guess I need to hear other people's stories about using salofalk enemas.

My main symptoms is blood mucus and since starting treatment with pentasa oral and pentasa supporsitories at the start of November I got my bowel movements down to one soft-normal stool per day (I only went max 3 times a day before treatment). However, i was still getting bleeding at least half the time (blood was also my first symptom, even before the diarrhea). At the end of December my GI decided to put me on salofalk enemas 6g as he believed that the bleeding was coming from the lower part of my descending colon (I believe this too, the blood is usually only at the end of the stool and not covering the whole thing).

Basically in the first two weeks of using the enemas I didn't see much difference (in fact the white enema made blood more apparent). By the third week there was still a bit of blood but much much less (like watered down to an orange/yellow colour), and by the last week I had no blood for 8 days.

However, I'm in Australia and doctors can only give one month prescriptions for the enemas, you can't get a repeat script (I don't know why but for some reason our health system has made it that way).

Anyway it's been 5 days since I ceased all enemas and suppositories and the blood has returned, and returned to levels pre-enema. I'm so upset because I definitely noticed a huge improvement whilst doing the enemas and now I feel like I've totally gone backwards.

I managed to get in to see my GI on Friday and I really want to do the enemas for another month or more.

My question is, how many months did you need to stay on the salofalk enemas for to achieve and maintain remission? I really feel like a month was not enough time to achieve the healing I needed to go off them. And I'd really like to avoid steroids and immunosuppresants for other medical reasons.

What have your experiences been?
Posted 1/24/2017 2:08 AM (GMT 0)
If something was helping me but not available through normal RX channels I'd find a way to buy it.
That said, yes mesalamine enemas (same as Salofalk because I've ordered them from Canada) helped me but not 100% and not a magical improvement in the first 30 days, but yes I could see improvement.

For me it took diet modification (eliminating insoluble fiber and other foods my gut has trouble handling) before things really started picking up speed to remission. But I def. feel enemas were important in healing, much more beneficial than oral RX.

Weird that Aus. will allow oral meds with no cut-off but not rectal meds. Seriously, do they think people will use them frivolously? For fun? Maybe it's a cost issue? But oral meds are costly too.
Posted 1/24/2017 3:46 AM (GMT 0)
It's not unusual to take 3-4 weeks to see an initial response to a treatment and then it might take multiple months afterwards to fully heal. Here in the USA enemas can be used as a maintenance treatment, I took them nightly for several years straight.

I'd advocate for long term use of the enemas as you showed at least an initial response. It's either that or a stronger class of UC medications like immunomodulators (azathioprine/Imuran or 6mp) or biologics (like remicade or humira).

You mentioned not wanting to go on immunomodulators due to other health issues, what are those concerns?
Posted 1/24/2017 4:24 AM (GMT 0)
Thanks for your replies!

Sorry I should have been more specific: I could take the enemas more than once (if the doctor thinks its worth it), but I can't get a repeat script. Which means every month I will need to go back to my GI and get another script for a month's worth. Which is incredibly annoying because it means I need to pay to see the doctor every month, when I wouldn't have to if he was allowed to give me 2 or 3 months worth on the one script.

I've started the SCD and so far I think its helping. Eliminating insoluable fibre is not an option for me as I can't eat grains or starchy vegetables due to the fact that I'm insulin resistant and those foods are super high in carbs. That said, my bowel movements are pretty much fully formed, I only go once per day and I don't have an upset stomach. I just can't seem to get rid of the blood.

I don't want to take steroids because I'm insulin resistant and therefore could easily develop type II diabetes on them. I've also had to loose 10kg to manage my PCOS and steroids would completely undo all the work I've done in the last year to fix this problem.
I don't want to immunosuppressed because I've had multiple abnormal pap smears and the only way to overcome this is to have a healthy immune system eliminate the HPV virus - not something I'll be able to do on immunomodulators. Plus I just generally do not want to be immunosuppressed. I realise I may not have another option, but they really are a last resort for me.

I'm hoping that because I showed an initial reaction to the enemas, my GI will allow me to continue them. it's just annoying that I may have to go back to see him every month in order to get another script.

Post Edited (Sarebear89) : 1/23/2017 9:38:58 PM (GMT-7)

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