Hi my name is Anne. I have ulcerative colitis and been struggling with it for 6 years. 3 years had a severe flare, I’ve written on here a few times I’ve tried many medications and even was on a clinical trial for fecal transplants. I seem to improve and have mild symptoms than I flare up again, I’m currently having an acute flare up just before Christmas and ended up in hospital for a week on hydrocortosone 100mg 4 x a day infusions. Lucky I was able to leave hospital on Christmas Eve my condition greatly improved with the infusions but I still have ulcers diarrhea and occasionally bleeding. I’m currently on mtx injections and now my GI wants me also on infliximab infusions Australia has finally approved it for UC patients.
Some more background:
I work in information technology industry a job I enjoy, I also love going to the gym when I can and loved doing cross fit training but sadly my body has so much arthritis and my UC makes me exhausted I find I can’t do cross fit the way I would like to. I love to sing but don’t have the courage to do anything about it.
Symptoms of UC Right Now:
I have urgency with loose bowel movements and watery diarrhea, occasionally bleeding I also have feeling wanting to go but I don’t. I’m fatigued all the time and get tired very easily and suffer from mild abdominal pain
Methotrexate and Infliximab
So i have been diagnosed with UC now for over 6 years it was only mild when first diagnosed then had a flare for a year but trying I was in denial and didn’t want to go on Imuran so I sorted homeopathic meds but the flare was getting worse. I joined a colitis and Crohn’s meetings and discuss that I was going to get better doing scd diet, but was so ill I wasn’t eating and was pushing my body going to the gym 3 times a week. I don’t know how I was able to push myself lie that. Then eventually I was so sick that I was admitted into the hospital for 6 weeks I didn’t realize how sick I was until I heard my cpr was over 300 and I was basically on my death bed.
I’m currently having an acute flare and was hospitalized just before Christmas at the moment I’m on methotrexate injections and prednisone there is talk about putting me also on infliximab infusions as well so was wondering if any one is also on methotrexate injections and also on infliximab and if it has helped with their ulcerative colitis, also if they have any side effects from taking both medications.
I also suffer from prednisone induced diabetes and been on medication for my diabetes now for 3 years. I also take turmeric, Green lupid muscle oil, flaxseed oil and milk thistle, plus since my first flare and I’ve being on hydrocortosone and prednisone for nearly 2 years I had to go on blood pressure meds and cholesterol lowering drugs. I’ve also had to have a total thyrictomy looking for cancer but luckily no cancer so on full time thyroxine meds. I swear I hear my meds move and juggle in my body.
Medications and Supplements:
I’ve tried homeopathic and naturalpath meds, Imuran, 6mp methutputen hydrcortson infusions, had 3 x infliximab infusions 3 years ago, I try diets but I’m not good with diets, ensure plus .
written by Anne
submitted in the colitis venting area
I have been flaring since 2009
Hi Anne,
Hey, thanks so much for taking a few moments to share your story and to give an update on how you are doing:)
I’ve read over your story now 4 times in the past 20 minutes since I published it, and I think you should start singing. Yep, I think that will help you out alot:) Seriously, if you’re willing to share your story on an international website, where we talk about comes out of our butts all the time…I’m pretty sure getting your sing on won’t be hard at all.
But, also and more to one of your questions, I did some searching the past few minutes also on PubMed (the super awesome resource we all have access to which contains tens of thousands of medical studies…) and I came across in my searches a study which might answer your question from a statistical point of view about CO-therapy of infliximab and methotrexate. Here is the link to the summary/abstract:
http://www.ncbi.nlm.nih.gov/pubmed/20587545
and the title of that study is:
“Usefulness of co-treatment with immunomodulators in patients with inflammatory bowel disease treated with scheduled infliximab maintenance therapy.”.
Give it a look up. And for sure I’ll be hoping that some others here have some first hand experience with the two meds together. I myself only was given infliximab by itself, so no dual med expereince for those I can offer.
And I have to mention this because I’m kinda bummed that you have not found any relief thru diet changes. But, rest assured that I had never in my whole life gone on any sort of diet, no-eat list, food rules etc… NEVER, not a once before my UC diagnosis. But making diet changes after about a year post diagnosis has made all the difference to me. Reducing stress too as much as possible(which is even harder than following a diet to me:) has been very helpful.
No matter what, where, or how you do it, I’m sure you are going to start seeing some relief soon. Heck, you’ve got to be getting some good times down in Auzzzer land…you guys have summer right now while the rest of us are freezing our hebbbie gibbbers off…:))
wishing you the best Anne,
– Adam
Hi Anne
I am sorry to hear you were in hospital over the Xmas break, I too was hospitalised over the Xmas hols and spent New Year’s Eve in hospital.
I am in an acute flare and non responsive to stetoids and a whole range of immune suppresents. I am currently on humira injections and my gi wants me to start on methotrexate next week. So I guess I’m quite similar to you.
How are you finding the methotrexate, I hope it works for you. I will let you know how my combination works out and really wish you all the best with the infliximab.
Good luck Anne
Tina
Hi Tina
thanks Yes I have been on methotrexate now for abut 2 years know, I give myself an injection once a week. that and prednisone when required is how I am treating my UC at moment. the MTX can make me feel nauseas and also fatigued at times. When I first started to take it I used to have to sleep all day after the injection it knocked me about and made me feel so sick. Now days I still get tired from it and nausea but I also take Zofran tablets to help with the nausea.
Are you taking tablets or having injections? good Luck Tina I do hope that this combo is the medications you need to get into remission. Love to hear how your progress is. Hopefully I get the infliximab so I see if both combo works and keep you all posted.
Oh also talk to your doctor about taking Folic Acid you need to take this with Methotrexate(MTX) but not on the day your take MTX for instance I give my injection on Friday night and take a folic acid tablets on Monday Tuesday and Wednesday only apparently taking MTX causes you to loose folic acid. but it also helps with the nausea. but taking them at same time makes the methotrexate not work as well hence the break between the dose etc.,
take care and Good luck to you also Tina
Hi,
I had methotrexate weekly by oral dose. It did bugger all to treat the colitis and the side effects were suckville.
Have you had a colonoscopy?
Good luck,
Peter
when I was first put on MTX I was put on the injection because I wasn’t absorbing medications to well hence the injections. I was told it is absorbed better than the tablets.
Yes I had a flexiscopy the day I got admitted into hospital and showed my disease had progressed all the way sigmoid colon. Hence way I was admitted to hospital the day before leaving I had another scope and showed considerable improvement but still have ulcers and inflammation etc., I am scheduled for another scope sometime in February.
all the best Peter what are you on now..
Hi Adam Thanks for the link did you interrupt that it doesn’t work that well. that is how I have read it. Yeah I wish I was able to diet I try dieting but then doing all the prep work for meals is tiring would be good if I can get some tips on how to be more organised so I could follow SCD or paleo, with the little time that I have.
Also thanks for the encouragement regarding my singing, perhaps one day lol I keep you posted when I do.
Hi Anne, thanks for all your advice, especially the folic acid. I will find out on Tuesday about how I take the mtx. My current flare has lasted over 10 mths and I think if the Mtx and humira do not work, I might be going down the surgery route.
I will keep in touch and let you know how it goes, it is good to be forwarned off the side effects.
Good luck with the infiximab, I really hope it works for you. I look forward to hearing how you get on.
Good luck Anne
Tina
Hi
I have been on the infliximab infusions for 4 years now and I have basically been in remission with regards to my colon since day one so I am happy to stay on it as long as it keeps working for that. Don’t have too many side effects from it but I do suffer from joint pain so have now had to start taking methotrexate tablets to try and eliviate those symptoms. You do have to take folic acid with it and not on the day you take the methotrexate. It can also take up to 12 weeks before the full effects of the methotrexate are noticeable so you have to give it some time. My doctor advised me to drink apple juice to help with the nausea but I drink clear grape juice and that also seems to help
Good luck with everything and I really hope you have a happy outcome with your UC :)
Hi Colleen thanks for those tips and we’ll wishes, good luck I hope tthe mtx helps with your joint pain
The Remicade had the reverse affect on me. It ruined my colon and my joints. Methotrexate will also supress your immune system so when you get a cold or sinus infection or whatever it will be difficult toget rid of. Ihad to finally have my colon removed and had a J pouch contructed and for two years now I have my life back. the process was hell during the surgery process and the ostomy bag process but now all of that is gone and behind me I feel like living again and never worried about where the nearest toilet is. This site helped me through the entire process bu letting me connect with other J Pouchers. If know what I know now I would have never fought this disease for so long and had the J Pouch years ago.
Yeah there are times I think the same but I truly believe there is a cure for this a combination of medications, diet and listening and loving ourselves I know I’ve done the merry go round but I’m not ready for that. I’m so happy for you now that you have your life back do take care and good health to you
I think the issue is that while you wait the colitis can turn to cancer and then you are rooted. Not saying chop up everyone who is diagnosed but if you aren’t getting anywhere or getting worse on the endless cycle of pred and new meds, like I was, then maybe the knife is your friend?
Have you had an operation Peter .I know but I will decide after I exhaust treatment options right now inflixamab is on the cards and I need to really pay more attention to my diet I have never been good with diets and think I need look at my eating for 30 days be strict about it as well so planning to start 30days paelo / scd diet. I’m in the process of getting myself organized menu making and meal ideas so I can start. I’m not just going to say I’m doing this and not be prepared like I’ve always done before this so I’m doing preparing menus and ideas as I don’t really have everything ready to start so this time I’m planning cooking and committing I’ve started a pinterst page adding ideas and getting organized then I will start.
Yup. After 8 years of colitis I had the j pouch op last year.
Colonoscopy depicted my entire colon was rooted. I had tried loads of pills but nothing really worked.
Yes do try diet and other stuff. I think gluten free vegetarian helped with the symptoms. I certainly couldn’t consider eating meat with colitis. Yuck.
Others in my family have had the odd flare and been fine with it. They have even got off the meds. But I seemed have it a lot worse so in the end out it came.
I am certainly better off now than with a bleeding rotten colon that didn’t work.
I nope mthis info helps. Do ask if you have any other questions, I’m more than happy to help if I can….
Cheers,
Peter
I had a very bad flare of my UC six years ago. Balsalazide to the max. Steroids, etc. Nothing was helping. Was lucky I was working from home at that time. I started researching on the internet for some form of help and came across the SCD diet and purchased the book “Breaking the Vicious Cycle” and followed it religiously. Within one week, my symptoms started to subside. Everything that I had been eating to help my condition was what was worsening it. I feel the diet is easy compared to the alternatives out there. There was a clinical trial at Rush University in Chicago that I called about and spoke with the doctor for a while. He told me that they were only looking for people not on the diet at that time. I said I had been on the diet for one week and am improving and will not stop it. That was six years ago and I still take my Balsalazide and never filled any of my steroid prescriptions again. I know it is hard to live without potatoes, pasta, rice, etc. But, it is even harder to be incapacitated because of the UC. Please give it a try, seriously, it will not hurt to try.
hi Mary sorry Just notice your reply I have been doing my version of paleo/keto of late and It seem to help but then recently got affected with campylobacter jejuni and ended back in hospital with another flare. I am so annoyed as had to go back on prednison and I was doing really well on the diet even loosing weight so nowon pred again I am eating everything I currently also on xeljanx my UC is quite sever and running out of options. how are things going with you these days
Please try the SCD diet and follow it step by step. Knock on wood, I am doing well.