My Boyfriend Has Colitis – Looking for Some Input

Introduction:

My name is Merina, 25 years old from northern Ontario. My boyfriend and I have been together now for over 8 years. High school sweethearts, long distance relationship during college and recently just bought our first home and settling into our new careers! This year he was diagnosed with ulcerative colitis.

January of this year my boyfriend was diagnosed with UC.

This summer has been by far the worse in terms of flare ups yet. His current medications include salofalk enemas and prednisone. He has been on these meds for the past 3 months. the doctor had concluded that he is steroid depended due to the fact that every time he flares, he is so closed to being weaned off his prednisone (20-10mg). The doctor recently did another scope on him to determine the progression. We have now been told that remicade is the next step. We are in the process of TB testing and was wondering about any input in regards to remicade? We have been doing our research and are aware about its side effects on paper. Any information or experiences would be greatly appreciated.

Secondly, we have recently changed our diet to gluten/grain free. We have been told from numerous doctors that diet plays a minimal role in the treatment of colitis however we are willing to try anything that works, even if it helps a little bit…a little bit can go a long ways. We were told to stick to a low residue diet during flares however this still seemed to cause problems. He has mentioned that after eating gluten free & grain free so far he experiences less cramps then as per usual. Not sure if this has anything to do with the fact that he is in a higher dose of prednisone since he has just been recovering from a flare as well. We are curious to see who else out there has seen any success with this diet overall?

Lastly, I just wanted to say how much this disease has shed a light for the both of us. I have so much respect for people who are dealing with this as well as their loved ones who surround them. The patience strength are key and I know it’s not easy but I am confident there is light at the end of the tunnel…!

written by Merina

submitted in the friends & family members section




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5 Responses to My Boyfriend Has Colitis – Looking for Some Input

  1. Tara September 7, 2013 at 5:30 am #

    I just wanted to say that I think it is wonderful how supportive you are being. Going on the diet with your bf is great and will help him stay on track. It is VERY helpful to have a supportive significant other. Sometimes just saying things out loud to somebody is helpful. Colitis obviously causes a lot of physical problems, but the mental problems can be just as bad. The anxiety, embarassment, etc.

    As for the dr saying food doesn’t really play a role, I feel that it does. If he hasn’t already, keep a journal of what he eats and how he feels. You will get a sense of what may cause problems. There is a great app called “my symptoms” that allows you to put in food, drink, meds and has a list of symptoms that you can rate. You can customize it, so you could add symptoms like bleeding.

    Sorry I couldn’t be of more help. Just wanted you to know your support will be a huge help to your bf.

  2. bev September 7, 2013 at 2:56 pm #

    First, what Tara said! It’s priceless to have such a supportive person like you when one suffers with UC.

    Also, I think remicade is far too dangerous a drug to treat UC. I feel that way about all of the immune suppressors and biologics that supposedly will help us. Hurt is, more like. Asacol and steroids are bad enough! I hate to tell you this, but remicade will also either not work, or eventually stop working. It always does. Ask anyone who has taken it. I think we all just get so fed up with this condition, and out of desperation, we keep trying the next drug the doctor says we have to try. We just want relief! I hate to be so blunt, but I a, being truthful, unfortunately.

    Anyway, after 15 years on asacol and steroid enemas, and never really feeling ‘better’, my specialist said it was ‘time’ for Imuran and remicade. I said NO WAY. I then tried a GOOD probiotic (ULTIMATE FLORA CRITICAL CARE by RENEWLIFE) and fermented L-glutamine, and within one week, I went off the asacol and I am in remission! All true! I never wanted to ‘go there’ and take remicade or anything that strong. I do not want to perhaps damage myself any further, that’s for sure. There will be no more meds for me. Diet can certainly matter for some UCers, as well.

    Cheers,
    Bev

  3. KimberlyHI
    kimberly September 7, 2013 at 6:42 pm #

    Hi Merina,

    I have been on remicade one year. A year ago I was flaring so bad I was in the hospital and even on liquids only was still in bad shape. Remicade is scary but I went on it desperate to feel better. They did do a quick tb test first, and once I started I got 3 infusions within an 8 week period, then started one infusion every 8 weeks. It takes about 2 hours to get the infusion.
    I was in remission about 6 months then slowly started getting symptoms back so now they asked me to do infusions every 6 weeks, however I am already having issues before 6 weeks. So now I am taking steps with my doctor to eventually get off remicade and try going back on a med called lialda which is safer,along with watching the diet and a probiotic.
    So that is my experience with remicade, and I have read of others who were on it years with no issues. Others barely made it through 3 infusions before having allergic reactions. Everyone is different! Have the doctors tried to use lialda with your boyfriend? I hope he feels better soon. Watching the diet will help if yo u ask me…some do good no gluten,no dairy, no refined sugar. If I have too much fiber I have issues.

  4. Matt September 8, 2013 at 6:57 pm #

    Thanks for your story, your BF is lucky to have such a supportive and caring GF. I was on Remicaide for 6 months then I built up antibodies to it and now they want me to consider Humira. For some people Remicaide works great there’s someone on this site that has been on it 9 yrs. I felt great for the first time in 4 yrs but unfortunately it didn’t last. I hope you find something that works. Best of health

    Matt

  5. Kanishka July 3, 2016 at 11:51 am #

    Please ans my query, My boyfriend is suffering from this horrible disease ulcerative colitis from last one year. As we both know about its long term medication. Apart from medicines I want to know about the correct and helpful diet for him. Which can easily available in the market or even I can cook for him. Aa we both are students so I’m not so perfect in cooking…!! Anything which may help please show a stable track to us.

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