Never Ending Flare and I’m At My Breaking Point

Introduction:

I am a 21 year old student from Ontario. I have had colitis for 11 years, but has been pretty well controlled with medication until lately.

Some more about me:

I am a student struggling to keep up in school with all of my colitis which often seems to get in the way. I enjoy spending time with my friends and family and being active.

Symptoms:

loose stools, nausea, joint pain, and severe stomach pain.

Never Ending Colitis Flare

I have had colitis for 11 years now, and which age things seem to be getting worse. I have been on remicade for 4 years, but recently it hasn’t been working. Scopes reveal that my colon doesn’t look to bad off, yet I am having all of the symptoms of a flare.Everyone is stumped. I am considering having surgery because this disease has limited me in every aspect of my life. I have been dealing with these symptoms since December, and nothing seems to control them. I have severe stomach pain which leaves me in tears and doubled over. It is so debilitating that it limits my ability to go out.When this happens, I get the vommitting, and cannot keep anything down.The pain seems to get worse right after I go to the bathroom. I constantly end up in hospital, but there is no long term solution that anyone has come up with. My doctor feels i’m becoming steroid dependant as every time i wean off of them my symptoms come back. I have been on asocol which stopped working, and them immuran which I developed an allergic reaction to. When I started the remicade it was like magic and relieved my symptoms right away with barely any side effects. Now it seems like whenever I go to the emergency room they either don’t believe me, or tell me there isn’t much they can do to help. I get sent home, then am back soon after as the pain is so severe and I cannot seem to keep much down and am dehydrated. It seems most doctors either have a lack of knowledge, or sympathy to someone dealing with a chronic condition and so much pain. Has anyone else had this severe pain that was persistent and if so how did you deal with it long term? I feel that i need a solution until I can have surgery.

Medications:

remicade infusions, 40mg prednisone, probiotics, omega, iron

written by Brittany

submitted in the colitis venting area




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7 Responses to Never Ending Flare and I’m At My Breaking Point

  1. Graham from England
    Graham lee May 2, 2013 at 9:21 am #

    Hi Brittany,
    It’s always sad to hear from someone so young having to deal with this. I have a solution that should help with your pain and even reduce your symptoms. Like all things with UC it’s different for everyone but it is 100% natural and therefore nothing to lose. I gave up smoking 18 months ago and this would usually bring on an instant flare, following some research I replaced cigarettes with extra virgin olive oil, 1 desert/tablespoon, every 8 hours before food. This has been amazing and I never dreamed it would be so effective, there are others now benefitting too. EVOO contains oleocanthal, it is an anti inflammatory with similar power to Ibuprofen. I have recently had to take medication (Asacol) and I intentionally missed the morning EVOO dose, well by lunchtime I had pain in my left side. I knew what to do and the oil settled things surprisingly quickly, in less than an hour.

    After a great year I posted here to share this information, the thread is a bit rough to start but full of important information should you wish to try it, good luck!

    https://www.ihaveuc.com/olive-oil-is-helping-my-ulcerative-colitis/comment-page-1/#comments

  2. Angela May 2, 2013 at 10:56 am #

    Hi Brittany,

    I’m so sorry to hear about your recent troubles! I’ve also had UC for 11 years (I’m 24 and have been on remicade 9 years). Ask your doctor to run a remicade antibody test to see if remicade is the culprit.

    Has your doctor looked into other possibilities besides the UC? My sister was having severe pains, and would immediately go to the bathroom every time she ate with extreme urgency and diarrhea. She went to multiple GI’s and they were all stumped because her colonoscopies came back fine and told her it was IBS and sent her on her way with anti-depressants (which made me angry). So we finally took her to a general surgeon for his opinion and it turned out she had an overactive gall bladder. Once they removed it she were fine. Your story just made me think of it, people like us are prone to sometimes having other problems as well that can get masked by the UC. I for instance also have an autoimmune liver disease. Ask your doctor to run some extra tests (ultra sound for the gall bladder) and ask them to do more than a colonoscopy to make sure you actually aren’t having problems with your stomach or small intestine, that way you have more info to base your decisions off of.

    I hope everything works out for you so you can go back to enjoying life!

  3. bev May 2, 2013 at 1:39 pm #

    Brittany…if I had a dime for every time another UCers says the drugs WERE working…until lately…

    Drugs are not the way to treat and manage UC! When is the medical profession going to change the way they treat this condition???

    All of the drugs eventually stop working. In 100% of cases…sorry everyone…but it is true. Not to mention short and long term side effects.

    You MUST find out what works for you NATURALLY. I never believed in natural before…I always trusted and listened to doctors. Not any more!

    As everyone on this site knows, I am in remission for the first time in 14 years on a GOOD probiotic and L-glutamine. For some, extra virgin olive oil works, while for others, aloe vera juice controls their UC…we have to do the work ourselves. The doctors will all just give you one prescription after another, until all the medication options are exhausted and stop working, and then tell you it’s time to remove your colon, I’m so glad that I took charge of my own health…or I’d probably be without my colon too! What a tragedy. We get so fed up with feeling crappy and living like we do that we opt for colon removal. Who wouldn’t? But I don’t think that’s is our final option. I think that we can all take control or ourselves and try whatever we have to, naturally, to mange and live with UC.

    YOU have the power. You are the boss…not your doctor. Always remember that. Ask the hard questions…what will this drug do to me long term???

    Cheers,
    Bev

  4. shelly in maine May 4, 2013 at 1:43 pm #

    Brittany,
    As a long time uc’er who has been thru all the meds..you have nothing to lose in trying these natural routes before surgery if the outcome could potentially be the same, but the choice will be yours. I have used Chinese herbs, probiotics and about 98% scd, and some other things and Med free for almost 2years and struggling to get out of a flare since Oct., but I’ll go kicking and fighting MY way…too many years of Med damage.
    Choice is yours.
    Best, Shelly

  5. Sarah May 7, 2013 at 2:55 am #

    Hi Brittany,

    I’m 22, and I was diagnosed with UC when I was 15. It took over a year to get stable and for 5 years I was completely symptom free (asacol and Imuran).
    I slowly went off medications to try the natural route of healing with a good diet, supplements (probiotics, aloe vera, plant based diet etc) and exercise. I thought I was cured! I was proud to have turned my back on the medical system and take control. However less than year later, I am now experiencing a flare up that I cannot seem to control. Like you, I have extreme pain and it is completely debilitating. I’m currently in university and I’m struggling to get everything done. I have no energy to complete assignments and when I’m in class I always have to run out to use the toilet.
    I just wanted to say to you: don’t give up. You have so many supporters, like myself, who have all been there. Colon removal is last resort. What ever decision you make, we will be here to support you.
    I can only suggest that if you do try to go off meds and go the natural route, inform your doctor, seek extra help., closely monitor yourself and call your doctor if it goes south. It didn’t work for me and in fact, I completely regret going off my meds. It’s hard not to get frustrated, I know this. But just do not give up. Try everything you can, you have nothing to lose and only benefits to gain. If that means trying more meds, then do it. If that means alternative therapies, then do it. Just make sure you have tried everything before surgery. UC comes in waves and can often be unpredicted. who knows, maybe this will pass in time.
    I hope you find ways to be at peace despite all you are going though. It may make aspects of your life a heck of a lot more difficult, but don’t let it ruin your life. You have the power to decide how you let it affect you. Chose to be happy- always.

    Sarah

  6. Michael Hurst
    MichaelKHurst May 13, 2013 at 11:27 am #

    Hi Brittany,

    Hang in there. I almost had surgery myself after flares that became almost continuous. I had similar initial success with Remicade, although it ended up later contributing to infections which caused hospitalization. I was diagnosed with Ulcerative Colitis just before my 21st birthday in 1999. My initial flare was finally driven into remission by the addition of Cipro to my treatment regiment after 60 mg of Prednisone and 4800 mg of Asacol per day was not enough. Over the years I tried almost every medical treatment out there as well as diets and Pro-biotics, however I was not able to sustain remission for more than a few months without Prednisone. By 2011 my doctor recommended surgery, and I was feeling pretty weak, having lost 20 lbs in a few months. The colo-rectal surgeon told me I needed to elevate my protein levels in advance of surgery after seeing that my blood albumin levels were low in the blood tests. So I started taking Muscle Milk a few times a day, which had a lot of pre-digested protein including L-Glutamine, and along with Apriso and mesalamine suppositories I was able to taper off of Prednisone a month before my scheduled surgery date, however the doctors still strongly encouraged surgery. I now believe that the reason I was not recovering much between flares was because my protein levels weren’t high enough for my body to quickly repair the intestinal walls.

    Then a few days before my scheduled surgery date in March 2011 I found out that fecal transplants had been successfully used to treat Ulcerative Colitis through an article that had been published in the Journal of Gastroenterology. After having a hard time finding a doctor to do it as quickly as possible, I ended up talking to a woman who interestingly enough treated and in her words “cured her 23 year old son of Crohn’s Disease using fecal transplants who was very encouraging. I ended up doing the fecal transplants myself for a month. I started to get better and thought I had the illness conquered, however I stopped taking Apriso and the suppositories, and was not taking the protein shakes as often and ended up gradually sliding back into a flare.

    I ended up stopping the fecal transplants for almost 5 weeks, until my old GI doctor asked me to stop them as a condition for prescribing more Prednisone. Then a week later started taking the anti-depressant drugs Bupropion and Silenor (low dose Doxepin, prescribed for sleep) in addition to starting the mesalamine again and starting to rapidly taper off Prednisone. Within about a day my symptoms dramatically improved to an almost solid bowel movement. Another 8 weeks later a colonoscopy revealed significant healing in my large intestine. Within a few more months I was able to stop taking Mesalamine. Now almost two years alter I am symptom-free with occasional diarrhea which is often resolved by a day or two of a bland diet and Valerian root extract, no Colitis drugs, and no restrictions on my diet. I go into some more detail about my story on my website http://www.FecalTransplant.org.

    Michael

  7. Patricia May 14, 2013 at 6:35 pm #

    Sorry to hear this Brittany, I too have ulcerative colitis diagnosed six years ago, for awhile before I was diagnosed I had bad symptoms, severe pain and doubling over and went from one doctor to the next because I felt like they did not believe me. When you have ulcers in your colon you will have exposed nerves and when them nerves are exposed even when your UC does not look that bad the pain is debilitating, so debilitating I thought I was going to lose my job. Be careful of natural remedies you can be allergic to them, my body does not like herbs. But anyway I still had not been diagnosed and went to a new doctor and he said I had irritable bowel syndrome and gave me chlordiazepoxide-clidiniu M BRE and it took about 3 weeks but finally all that pain went away, it partially paralizes the intestines and helps calm down spasms from exposed nerves. Then finally I went to a gastro doc and did a colonscopy and I had UC, he said it was moderate and I thought moderate after every thing I had been through I would of thought it would have been severe. I think a lot of doctors don’t think about the exposed nerves ulcerative colitis causes in the bowel and they do not treat that part. I went through 5 years of Hell before I was treated with something that would help me, so don’t give up. I’m not saying that is what is happening with you but it sure sounds like it. Get Better Soon

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