My name is Kristen, I have had Ulcerative Colitis for 21 years and have never really got it under control. Ive tried everything from ASA to prednisone (ew) to Remicade.
Some more about me:
Im from Toronto, Ontario Canada. I am a psychology major in university and am working on completing my doctorate. The best thing in my life is my dog!
I have had UC for 21 years, being diagnosed at the rare age of 2. My struggle since then has been full of ups and downs, mostly downs. I am currently on Remicade and hyrdo-cortisone infusions every 6 weeks and was taking Imuran until 4 weeks ago. I was noticing horrible debilitating migraines, keeping me from school and other responsibilities. I tried everything, I went to a neurologist and got a whole bunch of tests done which all came back negative. I argued and argued with my doctors, telling them I was sure it was the imuran causing this as the migraines started shortly after I began this medication. Finally they agreed to take me off of it for a couple weeks to see what happened. ITS A MIRACLE! My headaches were gone, however my colitis was starting to get angry again. So we moved on to the next problem, now what do I take? My doctor suggested I try methotrexate and see if it helps. I was fearful to start such a damaging and scary medication that is commonly used for chemotherapy, however I agreed to try anything.
And so the next battle began.
I take 10.5 MG of methotrexate once a week and OMG does it make you feel crappy for a couple days. I took it Saturday night and the side effects began only a few hours after i took it. The worst being severe nausea, sometimes to the point of gagging and dry heaving, once in a while vomiting if it got intense. I also experienced a hangover type of headache on Sunday morning, and extreme fatigue for a couple of days. Just a general feeling of crap (however still an improvement to feel like crap 2 days out of the week instead of the 7 days i was dealing with before). A couple weeks into the methotrexate journey I bit my cheek and the next day i looked in my mouth, wondering why it was so painful. To my surprise the wound was covered in kankers and ulcerations…YAY (not). I turned to the internet for answers and found this was a rather common side effect, to the drug store i went a purchased a product by Colgate called Peroxyl which is a mouth wash specifically for mouth sores. Worked wonders, for anyone with this problem i suggest keeping a bottle handy. I have been taking methotrexate for about 6 weeks now and I am noticing the nausea is creeping further and further into the week. Lasting up to 4 days. It is really unpleasent to gag and dry heave all day, and I am unable to take gravol most of the time as it puts me right to sleep. I have tried ginger root pills which calm the nausea but don’t work for very long. I am wondering if there is anyone else out there with this problem, or even if any of you lovely UC’ers have any suggestions for medications or remedies for SEVERE nausea.
All of that being said, it should be noted the methotrexate and remicade are working very well on improving my Colitis, less symptoms than ever.
Currently taking Methotrexate, Remicade, Hydro-Cortisone. Also taking several vitamins because my insides have trouble absorbing nutrients; Multi-vitamin, B12, folic acid and iron.
written by Kristen
submitted in the colitis venting area
I have had Ulcerative Colitis for 21 years and have never really got it under control. Ive tried everything from ASA to prednisone (ew) to Remicade.
I love your dog! Wow you’ve been through it!!! UC at 2… I can’t imagine. I have just been prescribed metaclopramide and cyclizine for Aza nausea and its helping keep me out of hospital and I hope to stagger my way round a charity 5k on Sunday. Glad your colitis symptoms are beginning to behave and many sympathies re the nausea. It sucks xxx
Were you taking the methotrexate orally? I was told by my physician that UC people need to inject it subcutaneously because it can mess up your stomach and cause diarrhea if you take the pills. The pills are for RA people. I did the injections myself for 24 weeks. It helped a lot.
Hi Kristen…another fellow Canadian! TO is my hometown.
Since you were 2 years old? Wow. That’s a long ass time to have had UC, Kristen.
Your story surprises me NOT!! That is such a harsh drug. None of the drugs are wonder drugs to me. I do not believe in meds to treat UC.
May I just ask…were you on antibiotics at all as a very young babe, before you were diagnosed, do you know?
I can understand why you agreed to try anything. UC is debilitating. It is an awful condition to have to be sure. I’ve had it for 15 years myself, and it has progressed to pancolitis.
I am not on any meds. My poor body hates them. I take a good probiotic (first thing in the am, on an empty stomach with water, and then don’t eat for at least half an hour. They can t=really do their job, that way). I also take fermented L-glutamine powder, again on an empty stomach, about an hour before lunch, which took the bleeding away because it actually HEALS the mucosa of the colon! Yep, that’s right. None of those drugs will do that. They just kill your immune system. Nice. We don’t have cancer, but they want to treat us with cancer drugs? This always still floors me. Talk about overkill…
To me, nausea is a sign that something is SO WRONG. I was nauseated for 14 years, and was told that it was the UC. BULL***! It was the meds that I was on…that my body hated and was rejecting! As soon as I stopped them, after the probiotic and L-glutamine put me into remission, I felt GREAT again! No more nausea…and for the first time in 14 years, I had an appetite!
Try those two things as soon as possible. Take them on an empty stomach because that matters. You don`t HAVE to stop the meds if you are too scared to…but you just might find that you will want to. Remember, you won`t die if you stop taking meds. I used to think that the doctors knew everything…not any more.
I liked your post, unfortunately I am also an UC patient since 2011 and OMG, it is killing me. Just wont end my life though. I had pancretitis when I took main drugs for UC (6mp and Lialda). So I was left with Prednisone. Got 3 flare ups so far. 1st and 2nd were ok lasted 2 months and 3 months respectively, got over with prednisone. But the 3rd one started in March 2013 and I am still suffering every day night. I dont think I have to explain what I go through to anyone on this site :) tried everything, Lost my job, and I am siting at home from past year hoping to get better.
I am told by multiple GI docs, you need to get your colon out because maintenance drugs are not working for you. I am on prednisone for more than a year this time, I tried SCD for a while left eating lot of Carbs, lost weight now I am 54 :) once I was 72. I also tried FMT, but before I could see any results “Fate” F*ed me, I broke my leg at home, got operated and was in bed for 3 months and on antibiotics and other drugs so FMT shit was waste. I am thinking of trying Methotrexate but scared as hell, because my HB count, platelet counts are already low. I dont want pancretitis for 3rd time it will F* my system further. Read about side effects got scared even more. Read your comments aboyt taking Probiotics and fermented L-glutamine powder before meals for a while, it may show some good results. This sounds so good, I want to believe it so badly.
My moral is in my A**, positive thinking is a distant dream or a lost world, friends and relatives look like enemies even though they are god send :), the very thought of surgery and giving one more year looks like a nightmare.
Can you please share little more about your Probiotics, diet etc which may help.
I WISH this to just end!
Wow Jag, I am so sorry…this all sounds like hell. HELL.
I take a 50 billion strength CRITICAL CARE probiotic by RENEWLIFE first thing in the morning on a completely empty stomach. Then I take a scoop of L-glutamine about an hour before lunch, again, on an empty stomach. I take vitamin D (3000 units or 3 pills of 1000 units) along with a 4mg capsule of asataxanthin (a natural anti inflammatory) with lunch. At bedtime I take a LDN capsule…not sure if it actually helps, but it makes me sleep like a baby.
That’s about it. That’s my regimen. I do not drink alcohol at all, nor do I take any ibuprofen (advil, etc). I cannot seem to eat too much wheat, or popcorn, or anything with a hard skin, like apples unless they are peeled, or some tomato skins. These things cause me to bleed. You have to figure out what causes you to bleed diet wise. It can be different for all of us. It can even be that something causes you to bleed…and then six months later, all of a sudden, it doesn’t and vice versa. It is one helluva condition, isn’t it? Mostly, though, I eat what I want except for those things that I mentioned.
I know this all sucks so bad. I’ve been so sick with UC at times, I was ready to check out too, or at least felt like I wanted to…I’m clad I didn’t as I am close to pretty normal these days. Thank goodness.
I feel for you…boy do I. I wish for your flare to end too. You get to the point where you just don’t think that you can stand it another day. I would definitely revisit that FMT…not the harsh meds. Your body sounds like it won’t handle them anymore. It was telling you something re the pancreatitis.
Same for me. Methotrexate pretty much put me in bed for 2 days after taking it. After couple of months I just had to stop taking it. It seemed to keep the colitis at bay though, but could have been coincidence. I’m gonna try it again though at a lower dose as I have been on the pred way too long now. Make sure you have regular blood tests if you take it.
I find drinking wine daily helps.
Good luck to you,
I’m from Toronto and my daughter was diagnosed with UC at a very young age as well. It is horrifying but I’m happy to see you’re working on your phd and have made it through it all. I don’t know much about mtx other than according to the cochraine library review of literature (carried out by my daughter’s current and quite likely your former GI) mtx has not really been proven to be effective in UC. Was the remi on it’s own not working well enough? I suppose it could have bolstered it’s effect. And, there was a study done by some ped GIs in Rome, Italy on mtx and UC and they found some benefit but it was transient (we actually lived there for a while and were treated by this team). I’m happy to hear that you’ve managed to hang on to your colon for all of these years. My daughter is not likely to be as lucky – we have tried every supplement, diet and almost every med under the sun and if the next things don’t work her colon is going to be removed. I hope you find something for the nausea. I know in Israel they rx medical marijuana to children undergoing cancer treatment – perhaps you could medicate that way (it’s been shown to help treat IBD too depending on how you consume it). Just a thought. Good luck to you!
Thanks so much for your stories and advice,
I honestly don’t know if I had antibiotics pre diagnoses, I was so young I really don’t remeber much. Just stories from my mom about how horrifying it was! I think I will try probiotics, any particular brand you like more than others? I was on just remicade for a while, it helped for a couple months then shit hit the fan again (no pun intended, lol). The methotrexate honestly is helping, a lot less symptoms than ususal, which is nice. However the nausea is horrible, I am taking pills but I think I will be switching to injectable since that is supposed to reduce the side effects.
I really appriciate you guys taking the time to give me your advice! It’s nice to hear from fellow uc’ers.
My son 14 was diagnosed in may 2015. He was never out of remission (using mesalamine, pred, hydrocortisone enama, vsl3 probiotic) last week while in the hospital, with high pancreatic values, got his first Rimacaid. November 2015. He has his next injection next week. The GI has him on vsl3 probiotics, prednisone 20 MG BID, folic acid 1 MG SID and various supplements and we are following a low carb, no gluten, no dairy, low fiber diet. This weekend he has to take methotrexate 12.5mg for the first time. We were told it helps to keep the body from rejecting the Rimacaid treatment. Anyone else been told that?
My 14 year old son was diagnosed with UC 9 months ago.The first 6 months were a breeze but boy have we had an eye opening these last 3 months. He flared so bad he had to stay 4 weeks in the hospital. They found some CMV copies during a colonoscopy, he had to take antiviral meds, then he was steroid-refractory, bleeding wouldn’t stop so he needed a blood transfusion.They started him on Remicade right away because he did not react to the steroids. He improved some and they sent him home. He was at home for one day, had watery diarrhea and collapsed in the shower. We brought him back to the hospital. His hemoglobin level was at 5.2. He had contract cdiff in the hospital. Needed 2 more blood transfusions. They started him on Flagyl and gave him another round of Remicade. Meanwhile he had lost 20 lbs. This Sunday after being in remission for about 6 week and having gained all his weight back we had to bring him back to the hospital because he had bloody diarrhea. They gave him another dose of Remicade, a 3 day blast of steroids and started him on methotrexate. Since his first hospital stay I have started him on the SCD diet, he takes l-glutamine, probiotics, vitamin d, fish oil. Nothing helps. I am about to pull my hair out. And yes the doc also told us that the methotrexate will help to avoid Remicade rejection.