Hello there everyone x so pleased to have found this site as I am in the middle of my diagnosis and need all the tips help and advice I can get! Currently I have been flaring for around a year and a bit with the process of diagnosis underway.my consultant said after the flex SIG indeterminate coliti. I have to go for my first colonscopy in a few weeks as my symptoms are worsening and I am after a solid diagnosis and treatment plan to start getting around this disease and how its going to affect my life.I am on salofalk rectal foam once a day 6 asacol tabs a day and now alverine and mintec and now prednsione rectal foam twice a day. Can anyone advise me of all these meds what they do??? I have a vague understanding of the uses of the anti spasmodics but the rest I just don't know! Any advice on flare foods, relaxation exercise tips?pain relief?also how the heck do you retain an enema in the morning?20 mins and I'm on the loo!there no point in taking them if I can't keep them in long enough for then to take effect?? Anyway thanks in advance for reading my essay and hopefully replying xx:dusty:
New to UC Xx
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Hi and welcome!
is it the prednisone rectal foam or the salofalk you take in the morning?
I never had any trouble retaining Cortifoam (prednisone) foam in the morning. never tried salofalk foam. Only salofalk suppositories and liquid enemas going to bed.
If you have trouble with salofalk foam, you can ask you GI about Salofalk suppositories. In the meantime, stay in bed as much as you can after insertion for best retention possible. If you have a tendency for frequent bowel mouvements when you wake up (just like I am used to have when Iam sick), wait for them to be finished before inserting any foam, this is key for retention.
The prednisone foam is given to you in hope to reduce rapidly the crisis/ inflammation in your rectum (and lower colon if this area is affected as well).
Salofalk is another anti-inflammatory which can take a bit longer to come into effect but which can be used for the long term (maintenance therapy), as opposed to the prednisone.
as for diet, you can take a look at IBD-AID diet in my signature, just below.
You feel your symptoms have been worsening? For how long have you been on this medication regimen? and when is your next appointment?
is it the prednisone rectal foam or the salofalk you take in the morning?
I never had any trouble retaining Cortifoam (prednisone) foam in the morning. never tried salofalk foam. Only salofalk suppositories and liquid enemas going to bed.
If you have trouble with salofalk foam, you can ask you GI about Salofalk suppositories. In the meantime, stay in bed as much as you can after insertion for best retention possible. If you have a tendency for frequent bowel mouvements when you wake up (just like I am used to have when Iam sick), wait for them to be finished before inserting any foam, this is key for retention.
The prednisone foam is given to you in hope to reduce rapidly the crisis/ inflammation in your rectum (and lower colon if this area is affected as well).
Salofalk is another anti-inflammatory which can take a bit longer to come into effect but which can be used for the long term (maintenance therapy), as opposed to the prednisone.
as for diet, you can take a look at IBD-AID diet in my signature, just below.
You feel your symptoms have been worsening? For how long have you been on this medication regimen? and when is your next appointment?
Thanks so much for the reply x I am on both salofalk and prednisone as rectal foam x I find it very hard to retain the foams in the days as I can only lay down for half an hour or so until I have to get up and see to the kids! I just held in the pred for around half and hour and its just come out with my second bm today! I'm worried that its not going to be working properly if I can t keep it in longer than a half hour at a time!
My total meds ATM are 6 asacol,3 alverine,3 mintec, buscopoan if its really bad,salofalk once a day and the pred twice x my urfgency has lessens considerably and there is lots less blood and mucus but the poo is liquid still x I am wondering how long to take the pred?I have two weeks worth do I take it all?thanks for taking the time to reply to me x
My total meds ATM are 6 asacol,3 alverine,3 mintec, buscopoan if its really bad,salofalk once a day and the pred twice x my urfgency has lessens considerably and there is lots less blood and mucus but the poo is liquid still x I am wondering how long to take the pred?I have two weeks worth do I take it all?thanks for taking the time to reply to me x
Your pharmacist should be able to answer for how long prednisone foam has been prescribed. Take it as indicated by the doctor. If you feel you may have 2 or 3 bowel mvts in the morning, wait for all these to be done before inserting any foam, even if that means waiting a few hours in the morning until lunch. That way you have better chance to retain it.
If you have observed reduction of symptoms, thats very good, so keep going as indicated by your doctor!
when is your fallow up appointment?
If you have observed reduction of symptoms, thats very good, so keep going as indicated by your doctor!
when is your fallow up appointment?
Hey! Tther x since I last posted I have had some bad news x my symptoms are still here but my nurse on the gastrointestinal ward at my hosp has reciewed the biopsies from my flex SIG and told me I have IBS!what a bloody joke this is not IBS I am well aware of my body and the dramatic changes in bm bleeding for over a year had me at last going to the gp and Hosp for exploratory procedures and now she's trying to palm Me off with an IBS diagnosis!of course the biopsies were non specific I had stopped bleeding by the time I eventually got seen due to the meds I was prescribed!!! I am about to ring gp to make a appointment yet again to push for another colonoscopy and further testing to see what is wrong with me and why I am expereifncing such pain and urgency now x I'm exhausted and annoyed at the sheer full stop this is putting to my social life,church and uni I csant leave the house for longer than a half hour and now palmed off by a bloody nurse!!!Furious! X anyway could I ask have you experienced burning in sections of your colon?I get it right under my stomach to the left and around by my womb before bm x never had it before and wondered if its a symptom of uc ? X
In your first post you mentionned the consultant said to you ''Indeterminate colitis'' at flex sigmoidoscopy. So he saw lesions and inflammed gut right? otherwise he or she would NOT have given you IBD treatments. A GI do not give crohn's colitis, UC or indeterminate colitis treatment such as you have been prescribed without visual evidence of inflammatory disease activity at endoscopy.
the fact that these biopsies came back normal is beyond my comprehension honestly. Could it be a mistake? It is possible biopsies cant ever determine crohn's or UC, so a colitis remains ''indeterminate'', it is still an inflammatory bowel disease but with no name except '' Indeterminate colitis''. This is what I am. Call back that nurse and ask to talk with the doctor who performed your sigmodoscopy ASAP. Go back to the hospital if necessary to find him or her. You need clarification on your diagnosis and treatment by a GI doctor, not a nurse. good luck.
the fact that these biopsies came back normal is beyond my comprehension honestly. Could it be a mistake? It is possible biopsies cant ever determine crohn's or UC, so a colitis remains ''indeterminate'', it is still an inflammatory bowel disease but with no name except '' Indeterminate colitis''. This is what I am. Call back that nurse and ask to talk with the doctor who performed your sigmodoscopy ASAP. Go back to the hospital if necessary to find him or her. You need clarification on your diagnosis and treatment by a GI doctor, not a nurse. good luck.
Yeah I think that the problem arose with the biopsies as I had been bleeding for a year or so then it really started getting worse with mucus clots and astuff and the salofalk and asacol I was using whilst I was waiting for my flex SIG worked and stopped the bleeding so when I went in he obv saw the inflammation as he wrote indeterminate colitis patchy distal? Whatever that means and wantedf to do a full colonoscopy x because it was so painful I said NO!so at follow up app he explained my endometrieosis has fused my bowel somewhere and that's prob why it was so painful and didn't say anhing about the biopsy results to me just said carry on with the asacl and the salofalk. So I assumed I had his word that it was IBD x then when my urgency was reaching 20 times a day and the bad pain and then all through the night I phoned the nurses and she advised the urgent colonoscopy. My gp gave me the pred after 2 Days the urgency lessened and then I get a letter from her saying my biopsies non specific I rang and she's cancelled my colonoscopy and said irritable bowel?!she didn't answer my question well how the hell did I bleed with zero pain for a year and a but tho?! I'm so annoyed IRS like I knew what it was and it made sense and now she's taken that away from me and palmed me off with IBS x I'm going to my gp asap and going over her head if poss for that test x
What test with the GP?
its really the GI you need to see for clarification and fallow up. Its not a nurse over the phone who should explain to you a new diagnosis, especially not after a first diagnosis of patchy indeterminate colitis. I hope you can get to speak to the GI asap.
its really the GI you need to see for clarification and fallow up. Its not a nurse over the phone who should explain to you a new diagnosis, especially not after a first diagnosis of patchy indeterminate colitis. I hope you can get to speak to the GI asap.
My doc in the surgery will refer me again for the colonoscopy x I can't speak directly to my consultant as you have to wait to be referred x its a stupid system here in the UK x I know I need to be told by him its not ibd then I can carry on with the itrriatable not a nurse she's not seen my colon!!! X
