Panicked and started Rowasa 4 gm enemas twice a day

Hi , I live in India and am new to this forum . I was diagnosed with some form of indeterminate colitis in 2010 but conceived my child and went into remission for 2 years . Post that after a stressful time and quitting smoking I landed in a massive flare that I was very careless about . Finally in 2014 changed my doc , was diagnosed with distal descending colitis and put on steroids . Remission happens for a couple of short of one year and then again a flare . At that time I was reluctant to start steroids but the doc insisted I needed a short course of 20mg of pred . Again remission but this time after a lot of research and another second opinion I started generic rowasa enemas . Now 5 days back I noticed a speck of blood , panicked and started rowasa 4 gm enemas twice a day . I just wanted to ask if anyone else has ever done this and is this gonna harm me . I hate going to my doc coz his only solution is either Imuran or steroids . He is a complete non believer of rectal meds . I also take generic liada 3.6 gm a day . Please please help me with any advice . This is a long post and I am rambling but I am so scared and feel so alone

Thank you so much for reaching out to me .My worry is doing the enemas twice a day which makes it 8 grams a day is overdoing it . I don't want to add toxic levels to my body . Has anyone tried enemas twice a day safely and with the go ahead of a doctor

I would not worry about the 2x daily enemas because you do not absorb it all, so it is not really 8g. Besides I was prescribed enemas when I was already on 4.8g of oral Lilada.

There are also steroid enemas which are also not absorbed as much and have less steroid effect on the body. They can work quicker than 5-asa enemas.

If you have the generic Rowasa, it has sulfite, and 2x daily might introduce enough sulfite to cause some problems - even bleeding.

good luck

Thank you all for your advise , feel like I have someone finally o can reach out to . I have been using the rowasa every night for the past six months on the advise of another gi who is pioneering fmts in India for ulcerative colitis patients . Unfortunately he lives in another city and I flew down to meet him and it was his insistence that I add a enema to my daily regime . He promised me if ever needed he would try fmt for me when the need arose however since I was in remission I didn't qualify My local gi always tells me they are a waste and won't help me which is so frustrating . I guess I need to change my GI Asap . Sulphite free enema is not available in India but do far have not faced any issues .

Hey Quincy , the reason I added the 2nd enema was that the last time I noticed blood within a week I escalated into a mild flare that ended up being on steroids . That time when I added a nightly enema it was probably too late or My gi didn't give it enough time to allow them to kick in and out me on pred right away . Since then I have stuck to nightly enemas .this time I thought lemme add in the 2nd enema for a couple of weeks and try and stop this in its tracks . Is that a wrong game plan in your opinion . I consider you to be so knowledgable on 5 Asa's and read all your posts avidly . Thanks everyone for all your help

Kickucbutt....thanks for the kind words.

It's just my opinion based on experience. Sometimes more doesn't mean it'll work faster. Healing takes time and does so in increments.

Mild flare doesn't need systemic steroids. Topical lower dosage such as supps or foam would be better.
If you want to add another supporting medication, try suppositories during the day.

Just let the med do its thing...and it takes time.

It's good you're treating early....what is the extent of your UC, limited or throughout?

q

To bloom 93

Hi and thanks for all your suggestions and good wishes . The gi in India is based in Delhi however the fmt is on a trial basis from the government so he is allowed to enroll only patients on a funded basis , it's a completely wait and watch situation on that front he explained to me . Were you or are you based in India , I ask becoz you said you tried to reach out to some docs in India . Regarding LDN I tried asking my doc and he pooh poohed my suggestion , unfortunately there are no compounding pharmacies in India who would even give me the med , I would have to procure the regular strength and somehow get the dosage figured out myself 😢have any of you tried or figured out how that is done

Again my best to you and your daughter