Hi everybody, I have just recently been diagnosed with colitis, been suffering since September last year with urgent frequent bowel movements. I had a colonoscopy in February this year, colon was normal until 5cm in from the back passage with shown inflammation. One polyp was removed and 4 biopsy’s taken. I was prescribed Asacol for 28 days. The pharmacy only had half the amount so was then prescribed Panasta suppositories as Asacol had been discontinued. After seeing the consultant in May this year she confirmed it was mild colitis and prescribed more Pentasa. I was told to take as and when required. I started on one every other day to see how it went, I seem to have good and bad days but still going to the loo 3-4 times a day. I have been taking them everyday for over a week now still going frequently and sometimes 5-6 times a day on a bad day. No blood in stool just seems I want to go all the time. I had a really good day on Friday but on and off over the weekend again. I’m not sure if Pentasa is doing anything so will carry on taking everyday for another week to see if improves. I guess we are all different and jace to find what works for us. I feel every time I eat I want to go soon after too. Any tips or advise that anybody has tried would. E appreciated. Thank you
Ian
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Ian17
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I thought I had IBS in 2015, but it was in fact U. Colitis, and by the time I went to the doctor, I had to go straight into hospital as I'd also developed sepsis.
Once there I was given high doses of IV antibiotics followed by IV steroids at the same time after two days (which I have little recollection of).
Once the antibiotics were finished, it was just steroids pushed, and then onto steroid tablets when discharged, gradually trailing off for 8 weeks after.
It was at that point that I was put onto Octasa 800 tablets, which is Mesalazine. Initially 4 per day, then 3, and finally 2 once the condition had calmed.
I'm still on two per day 3 years later to keep it in remission, and touch wood, it's working. Any sign of mucus, repeated visits to the loo, or blood, and I can increase it by anything up to 6 per day, but haven't had to. I'd make another appointment to see my consultant before increasing it that much anyway.
As you can see, it takes quite some time for it to settle down to anything near normal, and it was some months before the side effects of the steroids and all the inflammation cleared up. I do still get uncomfortable days, but nothing that really worries me so far.
Meals can make it uncomfortable, but do take note of the foods etc., which can irritate it. I still avoid most of them - even stone fruit, which I love at this time of year!
Thank you for your reply, most helpful to know that it can take time to settle and find the right balance. I get headaches more now too and feel really tired some days. I will give it a bit more time and see how it goes before calling the help line number saying the Pentasa is not making any difference. The consultant did say there are many brands of tablets, stick to what works and suits you.
Colitis, and going so many times each day knocks the body sideways! I was literally drained. Weak, tired (slept an awful lot), dreaded eating, sick of being uncomfortable or in pain.
No doubt you're not absorbing many nutrients while it's bad, but it does take time to subside. As long as I saw small improvements gradually with treatment ...no more blood, and then gradually, going less and less, and the mucus began to diminish, at least i knew I was heading in the right direction.
No harm in getting some professional reassurance on sticking with it though - reassurance can go a long way to feeling more positive.
My consultant warned me that it was going to take a very long time to recover from as I had it severely, so I was a little bit prepared for the time it took.
Drink plenty of water ...that's important as the dehydration will make you feel worse, keep fibre intake very low for now, and avoid any known irritants.
You can gradually try reintroducing some foods once it settles down properly. There's some I still can't eat without wishing I hadn't.
We're all different, so keep an open mind, and don't be afraid to ask questions of your doctor/consultant.
Hi Ian, The meds you have tried - Asacol and Pentasa - are both first level anti inflammatory treatments with the same ingredient. They do work slightly differently so one might work better than another. Your gastro doc may try you on foam enemas, another option. They can take time to work, but if things don't improve, the next step would be a short course of oral steroids or steroid foam. After that, there are two more 'levels' of treatment involving immunosuppressants and injections/infusions, which is where I am (yet still going 5 or 6 times a day!) Let's hope you respond to some of the lower level stuff. In the meantime, try keeping a food diary for a few weeks to spot irritants. For me, they are cabbage, pulses, hot spices and thick skins on fruit and veg. Everyone is different so good luck on your journey!
Thank you for the advise, I will stick with it and see how things go, had a really good day last Friday then all changed again at the weekend. Not as bad today again m, I guess it will be a bit of a rollercoaster ride. Good luck with your treatment 👍
Hello Ian, how are you today, I find Pentasa helps with cramps a bit when the ole system is playing up also bleeding. Also if I'm running to the loo too much and it causes much achiness and heaviness, I don't eat until lunch then everyday until it passes a bit. Then Ok usually eat scrambled egg or just yogurt and fruit, until about half 3.then dinner. Lightish lots of veg and healthy. Should help,. Claire.
Hi Claire, thank you for your reply. I have had quite a good day today, I’ve found not eating until later is better for me too Although two days are not normally the same. I feel that it is worse sometimes in the morning and better later in the day. Just finding my feet with it a bit at the moment. I don’t have never had any blood so that’s a bonus.
I've just been diagnosed with colitis and have been put on Octasa 800mg twice a day, I was wondering after reading your post how you are doing and if you are on a special diet to help
Hi Honey456, I’m doing really well to be fair. The Pentasa was making my symptoms worse so my consultant prescribed 28 days of steroids suppositories. I’m almost symptom free with no medication now, Some foods still don’t suit me, nothing bad just uncomfortable stomach, I try things and get to know what suits you and what don’t, I love baked beans but they don’t like me anymore! Very High fibre, eggs seem to work well as well as bananas. toilet trips are almost normal with no urgency or frequency. Give your medication a chance , if your symptoms don’t improve or are made worse don’t be afraid to ask to try something else and be honest when you speak with your IBD nurse. Hope this helps a little, Keep positive and here if you need to chat. Good luck x
wow good to hear that you are now symptom free with no medication, how long did it take to be symptom free? Would you say high fibre helps or not . Thanks for the reply much appreciated
Hi Honey, it took about 6 months after finding the right Meds that suited me. I just introduced different foods slowly to see how they suited me. I wouldn’t recommend a high fibre diet but don’t discard it all together. Everybody is different so best to introduce different foods slowly. I couldn’t even go to the gym without running to the loo, now only go once or twice a day. Try and keep your stress levels down too really does make a difference.
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How long to diagnosis?
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