Hello, I have suffered on and off with UC or the last 4-5 years, flare up's often put me in hospital and seem to range on the severe side of things. I am prescribed Steroids during flare ups and Azathioprine & Mesalazine constantly to keep UC at bay.
It doens't seem to work though, I still get flare ups. I now take no medication (against Dr's recomendations) after being fed up of taking so much everyday and feeling weary from the side effects. Especially steroids, they seem to bring on bouts of severe depression which I find even harder to deal with than the pain.
I always have blood in my stools, and always have dioreah (min 4 times a day), I suffer with pain every day, often feel sick (in fact I'm currently writing this because of the sicknes feeling - it's gross and the bus journey to work probably doesn't help), the usual, exhausted...
I now use a hot water bottle and paracetomal to ease pain (which helps sometimes but often doesn't touch it) and deal with the rest.
Does anyone have any alternatives to steroids? or and herbal type remadies or methods they use that may be of use?
You could try a good daily probiotic,turmeric capsules and dairy free diet? I use curaheat self heating patches when out and about,microwave heat pad indoors and solpedeine max occasionally when pain is bad,also drink peppermint tea. Hope this helps you x
I too have started to look at alternatives to steroids. I've been on a course of Prednisone started a few weeks ago with little immediate effect. My doctor put me on a one-week course of Rifaximin which seems to be helping somewhat.
I just started looking at the medicinal use of marijuana and just a few hours ago received the below message from an medical marijuana advocate from Vancouver Island.
I have no idea what the situation is in the UK (or for that matter in Canada) on such use. But do follow up and see if it makes sense to you.
Emis Moderator comment: I have removed the rest of this post including links to web sites as we do not allow such links. If any user wants the message and more info then please use the private Message facility to request the details.
My husband cannot tolerate any of the medicines they give you for U.C. and he was in hospital all over christmas and new year he had an intravenous drip of steroids and a course of steroids , he still had the same symptoms so he stopped all medication and has Arrowroot mixed with water into a jelly like paste and since taking it we can go out and he gets sleep at night , also he has arrowroot biscuits and complan ,we swear the medication he was taking aggravated his UC, instead of helping , hope this is of some help to you its worth a try
Thank you everyone. It sounds like there are some good suggestions above starting research into the various options and will pick one to try first and see how it goes.
I have uc for 25 yrs have tried most things for cramps bleeding . During my last flare I came across this in a forum ,tried it and have had no bleeding or cramps past month . One tsp psyllium husk ( I use lepicol with probiotic in it and one tsp of psyllium seed --- only place online to get it is ' just ingredients ' I also put one tsp of hemp protein . I make it up evening time in water and leave it to next morning. I put two tablespoons kefir which is optional as lepicol has probiotics in it. I drink same which is slightly gelified but tastes ok. U can make up another batch to take in pm if u wish . I took it twice a day initially but now once a day and what a difference it has made. I am careful with diet .... I am sensitive to gluten so take gluten free bread, very minimal fruit , sugar and sweets minimal alcohol minimal as well. Having said that since taking this mix I can tolerate these things a bit better. For pain relief I take 30/500 co codamol, just in half tablets if I'm crampy .
Hi Maryjo,do you mind me asking how often you take co codamol for pain? I was advised to take paracetamol for my proctosigmoiditis pain but it doesn't touch it. I have found co codamol or solpedeine best for pain relief but worried about the long term use? I seem to get pain every second day at the moment so wouldn't use them every day. Find it hard to contact the gastro consultant for advice but this pain is impacting on my day to day life and causing me anxiety. If I can safely relieve the pain I am sure I will relax a bit. Thank you for your feedback
Just an idea to try to get some help from your GI doc. I've had a long-term relationship with mine and I occasionally phone his secretary with a question, she asks him and calls me back with an answer. You might want to try that and see what happens. A decent doc will give you an answer to a simple question like you have if he knows your situation. Worth a try.
When I was in severe pain I would have taken possibly 4 to 6 tabs per day. I'm afraid I do not do pain . As long as u do not exceed 8 tablets per day. The paracetamol is dangerous if u exceed the 8 per day and anything with paracetamol should only be taken at 6 hrly intervals if it's at it's max dose. Codeine can be addictive for some people but personally speaking I did not find this. Pain in itself can be very tiresome on ur body and put u in bad form and also make u feel down .
Forgot to say Jill u might as well be eating smarties than taking paracetamol on its own . It's very effective for pain if given intravenously but not orally when u r suffering moderate to severe pain. I remember when I was having mega flare with pain years ago and admitted to hospital I had to have pethidine injections as pain was so severe . Codeine is also supposed to help with the diarrhoea as well as relieve the pain.
Hi Maryjo,thanks for your reply. Had a docs appt yesterday and she agrees it's strange I'm having a lot of pain whilst in remission. I told her I suspect the Pentasa is causing me problems and that I was tempted to stop them for a while and see,she said do it then(sure gastro consultant won't be impressed but hey ho)! Will use enemas nightly for a while and see. She also said no probs using co codamol/solpedeine daily if necessary,although they prefer co codamol as solpedeine has extra salt in apparently. Will give it a week or two and if pain improves I will contact consultant to see if there is an alternative to Pentasa oral that I can try. Thank you for your help x
I had been on Asacol anti inflammatory for number of years and then changed to Pentasa by my GI as I felt the Asacol was not that great but probably my imagination! I was the very sorry lady ! The Pentasa nearly killed me with wind pain and it took me several days to realise it was the cause of it. Absolutely dreadful stuff in my case. Stopped it and within 24 hrs pain had settled. Went back on my Asacol. I actually researched round re both and Pentasa is used more in the case of Crohn's disease .
I don't know if this will apply to anyone else, but I've had uc for years and had a flare up recently. I must add that I had a liver transplant fourteen years ago and am on anti-rejection meds. This makes one susceptible to CMV infection. The doc tried prednisone starting with 40 mg reducing by 5 mg per week. After four or five weeks didn't seem to be working. (ten to fifteen washroom visits a day). Then my GI doc put me on valganciclovir for three weeks for the CMV (while continuing with prednisone) and after a week my diarrhea seems to be gone from one day to the next! 450 mg x 2 tablets twice a day.
Amazing. So anyone on immunospression meds having a flare up might want to discuss this possibiity with his/her doc. Mine did a sigmoidoscopy and took biopsies but found no sign of CMV, but said that it doesn't always show up and it appears he got it right. It's been a tought few months!
Hello again Maryjo! After telephone conversation with my GI regarding almost daily abdominal pain, he has suggested I try Asacol 1.5 instead of Pentasa oral. I will continue with Pentasa enemas and try the Asacol if I have signs of flare,so fingers crossed! Didn't realise you also had pain with Pentasa,makes you wonder how many others are affected by it? Do you have abdo pain on Asacol? What other meds are you on? Do you take probiotics etc? So nice to chat to a 'buddy' on here,hope you don't mind,keep well
No I don't mind as I no how debilitating uc can b and I am prob one of the lucky ones that has found something to relieve mine.
Yes I googled and some people do suffer with pain with it.
No Asacol does not cause abdominal pain in my case .
At present I take Asacol 2 tabs am and two pm. I take the Lepicol etc. that I told u about which has been my saviour .There are probiotics in Lepicol the box with the green wrapper and then there are numerous probiotics in the Kefir I take. You can google Kefir for benefits. Doms kefir site goes into quite lot detail. He seems to be the Daddy of Kefir for his knowledge. I take Vit c 1000mgs gaily, Vit B complex couple times a week , fish oil capsule daily. I also take supplements for osteoporosis which I have had for number years but that's another story. I started taking cabbage juice and I take Bone Broth which I make myself --- couple times a week. It also is good for uc sufferers. A batch if u make it will do u few weeks. Again there are recipes online. It's not very expensive to make. Hope u feel better soon .