Arizona Cactus Jumper – My Husband Has Colitis

Introduction:

I am a wife of someone with UC. I live in Arizona and am retired but my husband is still employed and trying to get this newly diagnosed UC under control. We have a large family and have lots of support but it is hard to explain to people what he is going thru and how it effects me also and our social life along with mental and physical issues for him. I feel helpless.

Arizona Cactus Jumper

My husband told me he had some bleeding in July. I was shocked as he had not mentioned it to me previously and we got him in right away for a colonoscopy, hoping it wasn’t cancer. Had a terrible doctor and waiting way to long for any real diagnosis so I changed doctors as I felt we were lost in the crack that is when we had another colonoscopy and were told he had ulcerated colitis. Started on Ascacol no relief, then put on Prednisone 40 mg. and no relief. We have tried nicotine patches and anything we read that may help stop the bleeding, then I found the book about how diet has effect on this disease, even though the doctors didn’t mention it. He has been on the SC diet, the beginning phase for 4 to 5 weeks and is still bleeding so we are wondering if we are doing something wrong or have other people had this experience. I found this web site and am hoping to be able to find some answers.

He goes on Imuran in another week if he isn’t better. Has lots 26 lbs and didn’t need to. The very beginning you are in shock and then you start trying anything you can but we don’t seem to be getting anywhere, is this common UC. I already have UC cookbooks and ready to start but can’t get the bleeding stopped. I feel so bad for my husband and I wonder will we ever get our life back. We are so active with our family and everything revolves around food so is there a light at the end of the tunnel? I know he can never go back to eating as we knew it so am willing to do whatever but right now nothing seems to be helping.

written by “Cactus Jumper”

submitted in the Friends and Family of Colitis Patients Venting Area




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14 Responses to Arizona Cactus Jumper – My Husband Has Colitis

  1. Carolyn March 27, 2013 at 6:03 am #

    {{HUGS}} to you all.
    For what it’s worth, when I was first diagnosed there was NO WAY that 40mg of Prednisone would have stopped the bleeding. I was immediately hospitalized (I was very very ill) and was put on an iv prednisone regimen, then graduated to 100mg a day. From there I tapered down each week by 10mg until I was off it.
    At 100mg a day i stopped bleeding within 3 or 4 days.

    Prednisone is NOT an easy med to take, but when the bleeding is that severe it is the only thing that will stop it. From there, the Asacol taken daily kept the bleeding away. Asacol alone wouldn’t have stopped the initial bleeding and other symptoms.

    I wish your husband good health.

    • Angela March 27, 2013 at 7:58 am #

      Great point Carolyn! 40 mg when it’s in a stepped treatment is actually a really low dose. Also looking into prednisolone instead. It’s basically what prednisone turns into after you metabolize it but since it’s already in that state if easier on the body and has been shown to be more effective (since your body has to do less work to get it to the state that you need it in). It might help knock out the UC upfront so that the diet can help. When it’s that bad you really do need to start with a med to kick start the healing and stop the damage before diet can be effective.

      Wishing you the best!

    • Pam Kern April 27, 2013 at 2:50 pm #

      Just wanted to say thanks to everyone for replying to my letter. In the past month things have changed for the better. When things are so bad, you don’t think there will ever be a light at the end of the tunnel but I can say to all the newly diagnosed ..things change, the don’t always stay the same. My husband was put on Immuran on March 1st and with the Asacol and prednisone has finally started seeing improvement. He has never wavered from the diet from the Stopping the Vicious Cycle book. So, I think it is all a combination of all of it, and it just takes time. He was so afraid to eat anything that was not legal and was and is very strict about everything, but he has had results. When you get that ill, you just want to be regular again. The disease blindsides you and you are not prepared. The Dr. is weaning him off the prednisone also and that makes us happy. This is a great site and just wanted to let people know how much we appreciate them and Adam for starting such a great support site. Cactus Jumper in Arizona

  2. Laura March 27, 2013 at 6:47 am #

    I feel for you as I too had the same problem with my husband last year. He was diagnosed and got sick quickly right after. Lost 50 lb’s in two months. Nothing has worked and he was immediately put on predizone, asacol, aprisio, remicade and 6mp. We are about to start Humira since nothing is working.

    Of course we too had to change our lifestyle and eating habits. I would highly suggest a stool test and allergy test to see what he is allergic to, and probiotics are a must.

    It’s good to research supplements and life changes along with pharmaceuticals.

    It’s very hard on the wife as you feel lost and don’t know what to do. Just stay strong and be there for him. Once he accepts his disease and starts talking about it with others he’ll soon find out there’s a lot of people with IBD problems and will put him more at ease.

    My husband just started the enema’s and they seem to be working. Of course his disease is located at the last 6″ of his colon so it’s been working better than the oral steroid.

    I’ll keep you in my prayers.

    Safe recovery.

    LD

  3. Sabine
    sabine March 27, 2013 at 6:59 am #

    Steroids did not do the trick either just gave me a moon face. I had to try different mesalamine tablets. The only one working for me is apriso. Also canasa works well I conjunction.
    Good luck

  4. Artie March 27, 2013 at 8:43 am #

    Hi,
    You and your husband are def not alone in this battle! I am currently in a 2 1/2 month flare myself. Lost 35lbs (and I was already thin). I am currently on Prednisone 20mg which I tapered from 40mg. It had no effect so I am trying to get off of it. I am also on my 3rd infusion of remicade, taking Liada and trying to do a nightly enema of mesalimine to work “both ends”.

    If I am healing it’s a very slow process for me. My improvements are in terms of weeks and not days. I just pray it continues in the right direction.

    I am also very confused on what to eat. I read everything you can read. Right now my diet consists of mostly meats and some carbs (rice, sweet potatoes). I found that i can tolerate dairy so I do eat greek yogurt everyday and drink organic whole milk. My breakfast is basically 1 cup of greek yogurt, 2 tablespoon natural smooth peanut butter, a ripe banana (or other fruit) and 3 eggs (fried or boiled).

    For vegetables/fruits I went out and bought a juicer. I first tried to actually eat all the veggies and fruits but found that for me it added extra trips to the bathroom. My colon is not ready for it at the moment. So with the juicer I can get the vitamins directly in my system and avoid the extra trips to the bathroom.

    Like everyone else here says though, what works for one person does not work for another. Just know that there are a lot of people who are still in the trial and error phase too.

    Recently a friend told me about how he had proctitis a few years ago and now another friend has just told me he is dealing with diarrhea for the last two weeks and is going to see a GI! It’s crazy how more and more people are dealing with this.

    Anyway, I am writing this to say hang in there, you are not alone and it will get better. It has too right?

    Artie

  5. Teanna
    Teanna March 27, 2013 at 9:45 am #

    Hey Cactus Jumper!

    A few years ago I had another flare of my UC and there was extreme bleeding-every time I went to the washroom it looked like I had sliced myself open and bled straight into the bowl. You couldn’t even tell I had diarrhea through all the blood. I was sick of meds at that point and took myself off all of them (straight off 30 mg of prednisone-I don’t recommend it!!).

    But I did find something that really helped me: George’s Always Active Roadrunner Aloe Vera juice. I was doing a few other things at that time,including an elemental diet for two weeks and some herbels meds, but I attribute the cessation of bleeding to the aloe vera. Unfortunately none of my other symptoms seemed to go away (still had urgency, diarrhea, frequency), but the bleeding completely stopped!

    I took 1/4 cup three time/day. It’s also very important that you buy that specific brand, from what I’ve read it’s got something, I think athraquinones?, removed which other aloe vera’s might have and can cause diarrhea. It honestly just tastes like water, there is no flavour at all.

    It does get better! It can be a long, hard process of trial and error, but once you find out what works for you (or your husband) it’ll definitely get easier. You sound like you’re super supportive-I can’t imagine how hard my disease has been on my family/boyfriend, but they’ve all supported and helped me through all my flares and diet attempts and horrible experiences and I can’t imagine doing this without them so keep up your amazing support!

  6. Tim March 27, 2013 at 1:00 pm #

    From one Arizonan to another …

    Get a good GI Doctor … Look into the Mayo Clinic. Imuran is a good start to get your husband in remission. Once that happens research natural remedies to eventually eliminate the pharmaceuticals. For example coconut oil, olive oil, fish oil, evening primrose oil, L – glutamine and fiber ….. just to name a few. Good Luck!!!

  7. bev March 27, 2013 at 3:29 pm #

    Hi,

    I am a non believer in medication to treat and manage UC. You will discover that EVERY drug eventually will either not work at all, or stop working. The way to REALLY manage UC is to heal the colon. Meds do not do this! It took me 14 years with UC to figure this out. I know all of the people above are well meaning in recommending to you this med and that med, but, unfortunately, all of the meds will fail in the long run.

    I started taking a good 50 billion strain probiotic (any probiotic with at least 50 billion strains will do), on an empty stomach, first thing in the morning, with water. I started feeling so good, I went off of the asacol that I had been taking for 14 years straight. It was actually making me sicker, but my doctor said that I HAD to keep taking it…so I listened, and did. As soon as I went off of it I felt 100 times better! Anyway, about a month into taking the probiotic, I was still bleeding, so a clerk at the vitamin store recommended fermented L-glutamine powder to HEAL THE MUCOSA OF THE COLON! Two days later…no more blood!!

    This is no joke. I know when I was first diagnosed, I was afraid, and didn’t know anything about UC, so I just followed doctor’s orders and took the meds. We all do that. I wish I had have taken control of my own health right then, and I wouldn’t have spent thousands of dollars on useless meds, and would not have been as sick, either.

    Just try what I have told you. It cannot hurt your husband, and Imuran is a very dangerous drug. It turns down the immune system, the doctors will tell you. That is NOT a good thing…trust me.

    Cheers,
    Bev
    :)

  8. Liza Goya March 30, 2013 at 8:32 am #

    Hi Arizona,
    Just like they mentioned above, find a good doc that specializes in UC. My GI referred me to two once he knew my case was way out of his league & I couldn’t get into remission. High dose of Predisone got me into a somewhat remission along with adjustments to the other meds like going from Asacol to the brand name Lialda. The docs say sometimes the generics like asacol don’t have the exact effect as the brand name drugs. Also while in a flare diet does count. I did the low residue diet (look online or ask your doc), basically no fiber – no fresh fruits or veggies other than bananas, everything else cooked real well, like potatoes. No lettuces, beans, onions, etc. I’d watch the aloe as its a laxative when taken per my doc & nutritionist though it seems like it should good for the healing properties! The Rowasa enemas help tremendously with the urgency of going. Lots of rest for your husband & good luck! This is a great site with lots of advice! I was diagnosed at 50 @ two years ago. My son also has UC for @ four years & he’s 23. Your friend & neighbor in Southern California…

    • Tim March 31, 2013 at 11:23 am #

      Great advise … well said Liza!!

  9. Wendy
    Wendy May 24, 2013 at 8:06 pm #

    That’s one thing with me I noticed, I can’t touch vegetables or fruit at all when in a flare and when not in a flare my colon is still irritated by them. Also, any kind of meat irritates my colon under any circumstances. I eat it anyway though. Sometimes I eat fruit or vegetables raw anyway. I used to live of them so much and I love them. I think it’s different for everyone but some things in general seem to work like that SCD diet which I half-heartedly try to follow. I’ve got to buy the book and read it though, but I cut out flour mostly. Once in a while I’ll have it. The thing is though, while in a flare, I don’t have many food options open. Everything annoys my colon, but some not as hard and fast as others. Little amounts of bland food seem to work the best for me and no meat, fruit or vegetables. So I have to live off potatoes, rice and whatever else I want to chance it on.

  10. Giovanna June 25, 2013 at 9:04 am #

    Hi,
    I am also a wife to someone that has UC. My husband was diagnosed in 2011. It has definately been a rough 2 1/2 years. He has been hospitalized over 6 times within those 2 years. He was told this past January that the only way he was going to live was to have his colon removed. The drs told him that he has the worse colon they have ever seen. He opted not to have his colon removed as he is a 32 old father of 2 young and active children and thought this would change his life dramaticly. He lost over 50 lbs. He decided against his drs recommendations and was dicharged the next day after a week long admission. He changed his diet and also is taking 1 tablespoon of extra virgin coconut oil- which has helped him tremendously. He also takes Apriso which is UC medication to maintain and also put him in remission. He had also tried every type of holistic/alternative route out there but found coconut oil has helped him tremendously.
    Read info about it on this website listed:
    http://www.livestrong.com/article/382690-medical-benefits-of-coconut-oil/
    Best Wishes,
    Giovanna

  11. Lori July 24, 2013 at 7:43 pm #

    My daughter told me about a new oral steroid that has less side effects than other steroids. It’s called Uceris. Worth asking the doctor about it.

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