messalazine 1g suppositories ( should I take them without a confirmed diagnosis)
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Hi, I have recently had 2 flexible sigmioscop,y first one did not confirm a diagnosis of uc from biopsy it just showed inflammation rectum from procedure. Second one just showed the same so consultant told me he could not confirm a diagnosis.
I original was refereed because I was passing blood from my bottom and I thought it may be my piles. The blood just appeared not due to straining. It lasted for about 1 week. This has happened about 3 times in about 2 years. I open my bowels approx 5 times a day but only small amounts and not painful. Sometimes it feels like never empty. Sometimes I have loose stools and then constipation. I just manage it and put up with it, its normal.
My question is I dont know how I can not be diagnosis with anything in particular after 2 procedures and 2 biopsies. I remember the nurse saying while carrying out the procedure " I only have to touch the wall and it bleeds". The Doctor put a clip in after the biopsy.
I feel like I have been left in the lurch, not knowing why taking meds not knowing if I need them and no one to ask and no diagnosis.
The consultant in out patients said take these suppositories for 1 month to see if they help as an experiment then come back to see me in 6 months.
Also I have been reading peoples side effects on this med and not pleasant.
0 likes, 9 replies
bustergut1 Poppy28
Posted
Hi Poppy28 you don’t say what the 2 procedures you had so don’t know if that inflamed your bowel. It sounds like you have proctitis- inflammation in the rectum, but why? Probably why they can’t diagnose yet just treat with meds. I’m assuming you’ve had blood tests etc. I’m using pentasa suppositories for proctisis. It should stop the bleeding & inflammation. I get increased joint pain when I’m using them but can’t say for sure whether meds or inflammation in rectal stump causing symptoms. Diagnosed uc 2013 & had bowel removed 2017. I’ve still got inflammation in rectal stump. You can’t keep on bleeding from rectum so you’ll need to take something to calm inflammation.
Poppy28 bustergut1
Posted
I had 2 flexible sigmoidoscopy to try to get a diagnosis. I had one blood test but they did not say what it was for. Ive been left with no support and just carry on and see what happens. Is the Pentasa for the symptoms or is it to stop more inflammation happening. Will I always have the inflammation or will it disappear on its own over time, i just dont know if meds for symtoms or just to stop any more inflamation happening, nothing explained to me just given to me as trial for one month then come back in 6 months thanks.
bustergut1 Poppy28
Posted
Hi Poppy
I had my large bowel removed in February due to my uc not responding to any meds & having been on oral steriods for nearly 4 years. I now have a Stoma bag. They did not remove 15 cm of my bowel to rectum as I was on steriods at the time & the healing is more complicated also it gives me an option to do away with Stoma if they form a j pouch inside from small bowel & join to 15cm of bowel left( hope that makes sense). Unfortunately you can Still have uc in any part of large bowel left & this is what is happening to me. I have inflammation in the rectal stump, called proctitis. To calm inflammation I have been given pentasa suppositories. The only side effects that I think I get when using them although Not proven is stiffness & pain in joints. When I stop using them all the symptoms of uc start to return. The bleeding can get quite bad like a period & of course the longer it goes on the more fatigue & possibly anemia. I think the consultant would like you to calm the inflammation initially & then see whether symptoms return. If you are not happy or sure whether to use them then I think you should speak to your gp or ring outpatients & leave a message to consultant via his secretary. If you do use them then may I suggest put on the finger protecter & make it wet under the cold tap & also make the suppository slightly wet under the tap before inserting standing up with one leg raise on toilet seat . It makes it much easier & more comfortable. Also put in begorehoing to bed. You may pass some of the dissolved meds during the day. Putty colour or black perfectly normal. Hope all this helps. B
bustergut1
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Fluffe Poppy28
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Hi Poppy... I'm sorry you can't get a diagnosis on what it actually is. Mine took a while to confirm as one doc said one thing and one another. Unfortunately it is UC but from bleeding to proper diagnosis and proper meds to control it, it took nearly a year and during that time it spread. (Long story for that one but.......)
As for the suppositories, we lovingly referred to it as the 'mood breaker' in our house!!! As far as the side effects - I had the oral messalazine tablets - I had a huge weight gain without trying and developed a bad rash particularly on my face - that in itself is a long story - though I can easily tolerate the mood breakers and the dosage is the same as yours!!! While all of us are different - some people will have a side effect to something while the next person doesn't. It is unfortunately trial and error.. the drug I am on now, some people have reported awful side effects but I haven't.... as for the mood breakers - they help reduce the inflammation....
Apparently it's not uncommon to have both UC and IBS and a few other bits and pieces going on. The IBD dietitian suggested I try the Foodmap diet to see what happens. I go from one to the other, like you, and then get so bunged up - it can almost feel like a tightening across the chest and back - and then I'll start bleeding again even though I'm still going 4-8 times a day as a result of it. I know I'm going to miss some of my favourites for 6 weeks including fruit I'd only just learned to like and my yogurt but I'm willing to give it a try and see what happens... then I can start to introduce the things I miss most and go from there... I'd sort of been doing it without even knowing with the exception of my yogurts, honey and onions but.... it's supposed to help with that vicious cycle from the trots to constipation to both at the same time...could be worth having a looksee at to see if that helps your situation as well maybe just maybe.
Take care and I wish you very well......
Poppy28 Fluffe
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Fluffe Poppy28
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Hi Poppy...
Sorry.. I did spell it wrong - all kind of new to me.. it's FODMAP and the pamphlet they gave me is called Reducing fermentable carbohydrates the low FODMAP way. The pamphlet I got from the dietitian was produced by the Department of Gastroenterology, Department of Nutrition & Dietetics from Guy's & St. Thomas' NHS Foundation Trust in London. Not sure if you can get a copy but you can always ask your GP to see if they can't get one for you or if you can find out about in on the internet... sorry again for spelling it wrongly!!!
Another thing I stay away from is stuff like ibuprofen in case you do use it and only use the gel for my run of the mill arthritis which is what I was told to do by a Rheumetologist (sp) at the hospital...
Let's hope the mood breakers do the trick for you :-)
Take care
Poppy28 Fluffe
Posted
ruari1 Poppy28
Posted