Ulcerative Colitis Tips


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Is A Normal Life Possible?

Introduction:

Hi. My name is Margaux, and I do not have ulcerative colitis, but I live with some one who does. I see on a day to day basis the struggle that he does through, and I’m looking for ways to help him win the battle with UC:)

I Live with Someone who has Ulcerative Colitis:

Hi All!
I’m so excited that I have found this website, as I have so many questions. As I’ve read through various blogs, it amazes me how many different variations of medications are prescribed for this disease, and also how many ways it is treated. I, myself, am not battling the UC fight, but the love of my life has been for 3 years now. Ulcerative colitis hit him hard when he was 23. He was having bloody diarrhea, and went to the emergency room. When he went, they told him that it was just a stomach bug, and it would pass. One week later, he is still having the cramping and bloody diarrhea. He went to another ER who told him to go see a specialist. Another week goes by and he now can not eat because he is throwing all of his food up. By this point, he dropped from 195 to 165 in this 3 week span.
Finally, he was scheduled for a colonoscopy and diagnosed with severe ulcerative colitis. The doctor told him that if he had not been diagnosed then, and more time had passed, that he would’ve had to have some of his intestines removed. James was put on prednisone and asacol.

The details before remicade are a bit fuzzy to me

because he shielded me from a lot of this, and still does.

When his test results for liver levels and blood cell levels come back, he won’t tell me about them being low until his results get better. He knows I worry a lot about him. Any way, he has been on a variety of pills, mainly prednisone, asacol, and immuran. Currently, he is on remicade, asacol, and immuran. The remicade has gotten quite expensive, and it’s still not fully working. He has, on a good day, 3-4 bowel movements a day. But there are at least 2 or 3 days a week that he is in and out of the bathroom. His stools are still not solid, from what he tells me, they are not diarrhea status either. They kind of disintegrate once they reach the water in the toilet..if that makes any sense? I’ve never personally seen it, but we are very open about poop in our household.

He has not had a solid poop since he was first initially diagnosed.

Recently, we were blessed with our first son. Since then, our priorities have shifted dramatically. He was decided to go back to school. He had to drop out while working on his bachelor’s degree in criminal justice since he was not able to drive to school. His career goals have changed though from his fear of not being able to be the state trooper that he wanted to be because of “his problem,” as he calls it. He wants to be able to travel and not worry about going to the park. His biggest fear is to have to tell his son, no I can’t go to the park today, Daddy doesn’t feel good. He does not want to miss a minute of our son’s life, not to mention that Remicade bill HURTS.
For the past few months, I have been determined to find something else to help him. I feel as if he does not have as severe of a case as others that I have read on the site, but then again, I do not know. I am a firm believer that diet can change everything, and started looking into this. James grew up in a big family, who liked their frozen meals and all those fun preservatives that come with it. His mom didn’t cook often. He also eats a lot of fast food, since his mother did not cook. I finally stumbled upon the SCD diet, and convinced him that we should give this a try. I say we, because I will be doing the cooking for him, and diets are always easier with a buddy. We are both very optimistic about the diet, but planned on starting after the New Year. I found this diet at the beginning of December, and it made no sense to jump into such a strict diet right around the holidays.
So, I’ve bought the book and started reading it, started planning things. I am a pretty good cook, at least I’ve been told, so making a new menu isn’t going to be too hard. What will be hard is when I’ve had a long day at work and just want to have pizza night instead of cooking. What will also be hard is making homemade mayo, ketchup, and yogurt. I know we will both miss our desserts and ice cream. We are HUGE ice cream eaters. It’s also going to be challenging to make sure he brings something to work.
So here are a few questions I have for everyone and anyone who is on this diet:
1. Tips on making the yogurt.
2. What do you bring to work for lunch?
3. How long does the yogurt stay in the fridge?
4. How does the homemade mayo and ketchup taste? How long does that stay good for?
5. Any tips for the first “cleansing” week of the diet.
6. Do you get to the point where you have normal, solid poop like I have? And where it’s only once a day?
I think this is all I can come up with right now. Looking forward to any answers, tips, suggestions. My ultimate goal is for James to feel comfortable going out of the house again, and to live a fulfilling life.

Thanks for reading!

written by Margaux

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10 Responses to Is A Normal Life Possible?

  1. Lara
    Lara December 30, 2011 at 8:46 am #

    I asked my doctor recently about when I’d go back to normal. She said that I’d have a new “normal” & to try not to compare myself to others. I’m also on Remicade & am having fabulous results with it (thank God!). My doctor told me that the goal was to get me to 1-2 times per day. Right now I’m at 2-3. I have a friend who has Crohn’s & she goes no less than 4 times per day. Everyone is different, from what I understand.

  2. sharalee December 30, 2011 at 9:27 am #

    Hi
    I am done trying to find normal with diet and medicine and in the new year sometime in the next year my whole colon is coming out and I will then have a bag. This will be my new normal. Will I be healthier ? yes and my ulcerative colitis will be completely gone plus the chance of developing colon cancer which is a high chance for me. I have family members that have had it plus my UC is really really bad and meds help for a bit but not long enough to get me in remission. Everyone with this disease is different and what works for them is also different. Just support him the best you can.

  3. Blake December 30, 2011 at 12:13 pm #

    Wow! First of all, you sound like an awesome wife! Horay for you stepping up and trying to get your man better! My name is Blake, 30 years old, had UC for less than a year (atleast that was how long I was actually diagnosed with UC, but I don’t know how long I really had it before I was diagnosed)and I’ve recently had my colon removed, a little over 3 weeks ago. I have to wear a bag until I get two more surgeries to hook my internal plumbing back up (it’s called J Pouch surgery if you haven’t heard about it yet. I’m also a father, my son is 2 and a quarter. I hated not being able to play with him while I was dealing with UC. I was always in the bathroom. The stress that it put on my wife was tremendous, she would do all the cooking, cleaning and caring for our son. I would go 15-25 times a day, with a lot of blood. I would have accidents, I had to wear diapers on my 45 minute drive to work. Life was miserable. I would have bad thoughts, wanting to just die sometimes and if it hadn’t been for my wife and kid, I’m not sure how I would’ve handled it.

    I tried pretty much everything you and your husband did. A list of some of the meds (I can’t remember them all): Sulfasizine (bad reaction), Prednisone (for almost all of 2011), Asacol, Asacol HD, probiotics, Lialda, hydrocortisone enemas, AMP Floracel, the list goes on. I got one infusion with Remicade and broke out in a bad drug rash 10 days later and my doctor would not give me another infusion and I didn’t want one either. My doctor was urging me to get in the hospital ASAP to get my colon removed. I refused at first, but once my wife and I went over our options, we decided to get the colon removed and do a 3 step J Pouch surgery. So I had my colon removed on December 6th. I’m still at home recovering and will finally be returning to work next week. I’m feeling very good at this point, so much better than I did with my colon. I don’t have to worry about having an accident or finding a bathroom anymore. Sure, living with a bag has it’s own challenges, it’s like learing a whole new lifestyle, but it’s a small price to pay for feeling “normal” again. I’m not trying to lure your husband into this surgery, but it sounds like he may be getting close to having to choose soon and I’m sure the doctors are already talking it over with him. I also went from 195lbs to 165lbs, just like him. The thing is, you don’t want to lose too much more weight before you do a surgery like this. You want to go into it as healthy as possible. A lot of people wait until they are very weak and fragile to do the surgery. I was very muscular, I had been lifting weights for atleast 10 years, so even when I dropped all the weight, I was now at a normal average weight for my height. I didn’t want to loose another 30 or some pounds and then be forced to have my colon removed because that’s what would’ve happened anyway.

    As far as the SCD diet goes, I would say to give it a try. I was on it for about a month and a half and that was the main reason I lost so much weight. It was a very hard diet to follow, but I did the best I could. I never did the starter diet, so I didn’t follow it strictly by the rules, I just ate what was legal, that could’ve been my downfall, but who knows. This disease is so tricky, I kept a journal of what I ate and what times I would go to the bathroom, never could find any correlation. I should also mention I was diagnosed as Celiac (allergic to gluten, which is in wheat, barley and rye) about the same time I got diagnosed with UC. I have been on a gluten free diet ever since and that didn’t seem to help either.

    I do want to mention that if it wasn’t for my wife, I don’t know what the hell I would’ve done. She really stepped up and helped with the SCD diet, went to all my doctors appts, kept detailed notes on everything they would tell me, set up appts for me, called the nurses… she was just the best and I almost tear up just thinking about how much she went through dealing with MY UC. It never phased her when I would show her my bloody craps, or when I would crap my pants, or when I would spend days on the couch in deep depression. Also, this website played a key role in my UC. Not only do you get great information, but just hearing how similar other people’s stories were to mine, made me feel a lot better about my situation. Not everyone has someone as great as you to help them through their battle with UC or Crohns, your husband is a very lucky man and I’m sure he realizes it. I know of atleast one firefighter who wears an ostomy bag because of UC, so don’t let your husband give up that dream of becoming a state trooper. It can be done, it may just be a little speed bump. I also had dreams of becoming a police officer at one point. I don’t think I’ll ever follow up on it, but I know how it feels to realize that you now have limits. I’ll tell you what though, I can do a lot more now while wearing this bag than I could when I was going through that awful flare. Anyway, I’m so happy you are helping your hubby out on this, you will eventually get back to a normal life with your son and everything, it will just take time.

    Blake

  4. Vicki Thomas December 30, 2011 at 12:40 pm #

    HI
    Well, I think that with UC – there is a new “normal”. I have had UC for two years now and I’ve had many ups and downs. I’ve been through many different types of medicine and did a stay in the hospital. All this being said, I’ve been in remission for almost a year now. Normal bowel movements, no stomach cramps, etc. So it is possible to be “normal” – the thing is that UC is always in the back of my mind. I know that I could get sick later today or tomorrow. It is important to keep up your spirits and those of your husband. There is light at the end of the tunnel. When I was admitted to the hospital last year, it was while I was in Belgium (I live in Canada) – I received amazing care and have recovered. When my doctor here saw my medical reports from my stay in the Belgian hospital he said he would have removed my colon… I still have my colon, have gained back the weight I lost and I’m only taking Asacol now. So just now that it is possible to get to a “normal”.
    Please keep us up-to-date with how things are going. I’m glad you found this website – it is an amazing resource with a strong group of fighters working together to help one another.
    cheers,
    vicki

  5. Margaux December 30, 2011 at 3:52 pm #

    Thank you everyone who responded. It’s great to hear how other people have learned to live with this disease. We start to diet Tuesday! I will keep you updated!

  6. Bev December 30, 2011 at 4:30 pm #

    You are trily a wondeful person. My husband is, as well, for he too, has to put up with my ulcerative colitis. I have had it for 13 years, and it started out only as proctitis, which is just in teh rectum. Asacol, and two weeks of enemas got it nicely into remissioin. I was told that it would probably not progress any further than that…Well fast forward 13 years later, and I have had some terrible flare ups over the years, and, after my last colonoscopy, have since been diagnosed with pancolitis, which means that my whole colon is now involved. I have always used asacol and enemas, including the steroid ones at one time, with success, until now. I cannot seem to attain remission this time. I have never taken oral prednisone, and I will not take it. I will not take immune suppressant drugs like Imuran or Remicade either. I absolutely refuse. I believe thos drugs are poison, and will lead to even greater health issues and problems. I am scared to death. I am currently taking 12 asacol pills per day, and a pentasa enema every day. I still have some cramping, and a bit of blood, and only one painful loose movement every morning, but I am going to live this way if I have to. The only thing I will consider, and my husband thinks it’s inevitable anyway, is colon removal through surgery. I am not quite ready for that yet, but I’m sure I’ll tire of the 12 pills and enema every day eventually. I am convinced that I got ulcerative colitis from taking the drug ACCUTANE four different times, for acne, when I was in my 20s. Big mistake! There is no way that I am going to let drugs like steroids, imuran, and remicade destroy my health even further!!
    Hang in there with your man. He loves you for it, I’m sure!

    • uma December 30, 2011 at 7:49 pm #

      Hello Bev You seem to be doing the right things but the enema’s will not reach the right side or the horizontal part of your colon.It works as long as the colitis is left sided i.e proctitis, sigmoid and descending colon. I have had it for 22yrs now.Now i have pan colitis. A probiotic did the trick and my colitis is in remission for over a year. So try it.

      • uma December 30, 2011 at 7:53 pm #

        An antibiotic induced colitis or c difficle colitis always responds to probiotics.

  7. Paul Willoughby December 30, 2011 at 4:39 pm #

    I want to be normal but have been told that I am not normal and probably will never be. However, I think each person can find the path necessary to cope with the disease and live as normal a life as possible. Best wishes to you.

    Paul

  8. Kathy Prieto December 30, 2011 at 6:47 pm #

    My husband was severe after he quite smoking. He was down to 108lbs. After he was out of the hospital, he was still bleeding….on lialda, prednisone and some horrible enemas- with no results, considering Remicade . We did not do scd- but did similar- boiled chicken, (carrots- boiled them for long time), gluten free bread, white rice and a bunch of scd banana muffins mDe with almond flour. Plus, 3 packets of VSL #3 DS probiotics a day (this is prescription strength- ask dr to write for it or can get it on line in non prescription dose (just need to take 2 of them to equal a prescription packet). Dont start this max dose right away- may not b able to handle it right away. I added 1 packet every 3-4 days. For the yogurt, u can google Lucy’s kitchen scd- she is a great resource- sells yogurt machines and provides specific instructions…. I also gave my husband this stuff twice a day- with some coconut oil( if u warm oil, wait till it cools before mixing with yogourt- don’t want to kill the good bacteria with the heat. Also added glutamine supplement- good for gut healing. Cigarettes also help-.as they gave in past he is done with quitting smoking- cigarettes are what keeps him in remission. He now eats a regular diet, smokes 5 cigs a day- no meds except vitamin D, calcium, multivi, fiber(now that is better).

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