Salofalk enemas seem to make symptoms worse

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Hi..My son had a colonoscopy and told may have Colitis..he was prescribed a months supply of Salofalk enemas and took first one last night...but today he has had to poop about 7 times with some blood ...the frequeny of the pooping is now more than it was before using the Salofalk and Im wondering has anyone else experienced this...he is only 18 and afraid to leave the house..It is not diarrohia but its just he needs to go so often...I am afraid he will loose alot of weight...If this is normal using this product I can relax...can someone please reassure me

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  • Posted

    Hi Carol when I had my flare they put me on the same enemas they work for a lot of people by afraid I wasn't able to hold them in and end up going to the toilet more.. I know it's really hard emotionally and physically for your son I do feel for him knowing those moments but try and persevere with them and see if it makes any difference if not you may have to take your son back to his consultant.

    Good luck X

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    • Posted

      Hi Carol

      I had the same ulcerative colitis and proctitius 10cm from the rectum up which sounds similar to your son, I got this when I was 23 11 years ago and managed ok till I had a flare while 7 months pregnant. The problem with this disease is it affects everyone differently so what works for one doesn't always for another it really is trial and error I found avoiding wheat and dairy helped me to begin with and When I got my flare last December 2014 I have been on every medication which for me nothing was working only surgery but don't panic this condition can be managed like I did for a good 11 years so please have faith please tell your son not to stress as hard as it is as that doesn't help at all. So hard I know though X

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  • Posted

    I would advise him to see doc again! I haven't used that product myself but when first diagnosed with U C, I lost a lot of weight. I saw my doc then and medications were revised to something more suitable. It's very important that your son doesn't worry or stress as that will only increase his loo visits. See doc asap and have all Meds revised try not to worry either, mum, he will see your worry! Hellish condition especially so young! Good luck!
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    • Posted

      Thanks for your reply....he's been to a consultant and he said its either an infection of mild colitis and 20cm Proctisis whatever that is...he only used the enema once last night and heard it takes a week or so for them to work...just found it strange that he is needing to go the toilet more since using them...he is afraid to leave the house
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  • Posted

    Hi Carol,

    Were the eneams prescribed for your son either foam or liquid and if so, was he able to accommodate it well?  I was originally prescribed Asacol foam enemas and found them impossible to use and was switched to the tablet and suppository form of the drug and these worked extremely well indeed.

    If you haven't already done so, do please read the patient leaflet carefully. Although I'm taking Octasa and not Salofalk tablets, the leaflet does say that, although uncommon, mesalazine can make the symptoms worse, so if his symptoms continue to deteriorate, you may need to speak to the consultant again and ask for further advice. 

    This is a truly wretched disease and to hear of young men and women in their teens developing UC is especially distressing.

    I hope and pray that your son quickly finds a medication that works for him and he'll be out and about again before long, leading a normal life.      

     

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    • Posted

      It's the liquid..it scares me when I hear u say it's a wretched disease...he can use them well..he just wants to go out with his friends and socialise normally..it's just so upsetting
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  • Posted

    Hi Carol,

    I'm so sorry if my words alarmed you; please believe me - that wasn't my intention in the slightest.

    He may well find that it takes more than a couple of days for the bleeding etc to ease up. For me, my loo visits have been more frequent than they were before I developed UC. This disease affects different people in different ways and not everyone has the same symptoms or reacts the same way to the medications.

    I can understand how worried you must be as his Mother and how he must feel, too, but as Rachel rightly said, do try not to stress too much. I know how hard that is to do, especially when you're both new to the disease.

    Once he gets into remission (which will happen, believe me), you will both begin to feel better and he'll regain his confidence and be able to get out and about with his friends.

      

    Again, I send you both my very best wishes for the future and I hope he begins to feel better very quickly.

    Peter 

     

     

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    • Posted

      Hi Peter..I hope you are well...thank you so much for your kind words, and you have reassured me greatly when you say how he WILL into remission...today he got to go out because he had no toilet visits,,.seems to go from one extreme to another...but he is going out tonight now as he feels confident again and im feel the need to warn him about alcohol...im sure it can be a trigger, ..but of course,..being 18,..there is not talking to him,..and I think his body will tell him tomorrow....You are so kind and thank you. and I wish you well too and hope you are coping with this condition smile

       

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