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Ulcerative Colitis
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Posted 2/21/2008 8:28 AM (GMT 0)
I have been reading through this site for the past week. It has been so comforting to know that we're not alone and people share similar emotions. My husband was diagnosed with UC almost a year ago. It has been life altering.

It seems like he hasn't gone into remission since he's been diagnosed. Sometimes he'll average 16-17times per day for a week and then he may go to the toilet 8-9 times per day the following week. He says he is not stressed. We have been taking precautions for what he eats. We've been doing this since he's been diagnosed. He has such a fondness for food, so this has been extremely difficult for him. At times I feel the diet restrictions make him feel worse, hence making his condition worse...is that possible?

Now, we are starting to feel that maybe he should just eat what he wants in moderation.

I was just wondering if anybody had any suggestions about the food. We are really having a difficult time figuring out what suits him and what doesn't. He keeps a diary of what he eats, but that doesn't help much.Some days that one food may suit him, while in a few days the same food won't. We were told no spicy, but he had salsa two days in a row and seemed fine. How do you determine if the increase in BM was due to the food and not other factors? What can I do to ease his stress level? I know he feels his freedom has been snatched away from him. I cannot get him to think more positively. Any suggestions? He is also not open to trying new/alternative things.

Please advise.

Also, has anyone been on Humira for UC? If so, how long was it before you saw any improvement?

Thank you so much for listening.
Posted 2/21/2008 1:01 PM (GMT 0)
If there isn't a consistent, repeated pattern of problems one or two days after a food, then I wouldn't consider that food a problem. Everyone is different, but my situation is somewhat similar to your husband's. I was past 50 when diagnosed and had a terrible time getting into remission. For the first couple of years, I couldn't tell that any foods bothered me because I was so sick all the time. When I finally began to be able to tell, it was a pretty short list.

I decided since I couldn't tell what bothered me, I'd just eat what I wanted. I did, and didn't get any better or worse. I've never been able to tell that what I eat or drink affects me at all. And stress doesn't seem to be a major factor for me either. I never saw any difference in my flare whether I was under stress or not.

The most common age of onset for UC is late adolescence to early adulthood, with a secondary peak in the 50's. Perhaps the condition we more "experienced" people have is a bit different than what the younger ones have. At any rate, I'd say eat what you want, as long as it doean't bother you.

His negative thinking may be related to depression. If he isn't on an anti-depressant, he might consider asking his doctor about this. If he's already on one, he may need a different dosage or drug. As my doctor told me, we have good reason to be depressed. This is a life-altering experience, and when you're so sick you can't see any positives to that.

I know you want to help, but just a gentle caution. This DD makes us feel powerless, as if we have no control over even our own lives. It's difficult, and even more so for men sometimes because it can feel emasculating. Remember that it's really his role to manage his health care and his life. Sometimes when our loved ones try so hard to help us, it makes us feel even more dependent. It also lets us sink into our own anger and grief.

I haven't been on Humira, so I can't respond to that. There are several people here who are starting it, perhaps they will have information for you.
Posted 2/21/2008 1:18 PM (GMT 0)
It sounds like your husband has put in enough time to try to figure out how food relates to his UC. I spent years keeping diaries, ruling out certain connections, and in the end came up with no info. He may also be someone for whom food plays little noticeable role in how he feels. I think the "everything that appeals to you but in moderation" approach is a good one. Better to eat and be happy about what you are eating! It can only help one's general outlook. I'm sure your husband knows what makes him nervous, food-wise, so you can probably just continue to offer support but little guidance in this area.

What medicine is he currently taking? What has he taken in the past that hasn't worked? Does he take any rectal meds? To quote quincy here, you have to treat from both ends.

It does take a lot of trial and error to find the right drug combo. Fortunately, with this discussion board, I think we help people reduce the amount of time it takes to find the right combo! :)
Posted 2/21/2008 2:53 PM (GMT 0)
Dear UC spouse:

You do not say what age your husband is... and what meds.?
My 62 year old marathon running fit husband was diagnosed on Nov 2, 2007 and was in hosp for 11 days over Christmas. As of dec 18th the hosp and doctors put him on a low residue diet ( look it up) and he has no lactose intolerance and so to put on weight ( he had lost more than 25 lbs) was also able to have higher fat foods: grilled cheese, mashed potato, ice-cream.... The only vegetables he can tolerate are broccoli and green beans ( cooked to grey) and low sodium V8 juice. he has moved from 18x bowel movements day to 4-5 and formed stools, with no blood. He has regained weight, energy BUT still remains in pain in rectum and has been able to reduce pain pills from 3 a day to 2 so we believe there is still progress to be made....
But for him the low residue diet has been what he can survive on....... He is on cyclosporin and imuran... This is all a very uncertain future of course and you can see from these forums that there is a range of foods which people tolerate. In the beginning he also took 4x day of ensure.

For us though the diet and food restrictions are crucial and have provided some movement forward ( of course with the drugs).
Oh and also looking for more and more ways to reduce stress and to "let things go" We never thought he had stress but oh if one observes then one can find some stress...
By any chance are you in Britain?... you just have a way of expression which made me think this.

This forum is very good and with lots of support and information... I have not been on a lot esp as we have seen improvement in the last 8 weeks. This evening we are even to have a dinner party: e will have salmon but i shall serve beef and salmon for any.... He will have some sips of wine only.... Welcome... and keep supporting and ALSO look after yourself so you can encourage him...
Cheers, Chloe
Posted 2/23/2008 6:59 AM (GMT 0)
Thank you guys so much for your support/advice.

I'm sorry I didn't give any medical info. about my husband. I didn't want to make my mssg. too long. My husband is 33 years old. He was diagnosed with pancolitis in May 2007. He was given colazal and then predinsone. Initially, there was a miscommunication with his doc. We're pretty sure the doc. said 3 pills a day for colazal, but she said 3 pills 3 times a day. So, he was taking the wrong dosage for about a month. Do you think that would've made a huge difference?

Anyways, every time he was weaned off of prednisone his symptoms would return. We decided to get a second opinion. The new doctor wanted him to try VSL #3 and an enema(can't remember the name) for 2 weeks. It seemed the enema was making him feel worse. Is that possible? So, he didn't finish the last 3 enemas and he stopped the VSL#3 (which I did not agree with).When this did not work, the doc. suggested Remicade. My husband thought this doc. was a bit on the aggressive side (treatment wise). So, we went for a third opinion. Finally, my husband felt he found the right match. After all, nowadays it's difficult to find a doc. that has the time to hear your concerns before stuffing drugs down your throat. While all of these changes were going on, my husband was still on colazal 3pills, 3x a day.

Basically, let me sum it up or I could go on forever. After trying most of the typical drugs to treat UC, he is on colazal (9 pills a day) and recently started Humira.

Chloe: Howdy, I am from Texas actually:) My husband also lost a alot of weight. Almost 40 pounds in 9 months. How did you figure out what foods suited your husband? How did you know he wasn't lactose intolerant? It seems that's the first things doctors say is to cut out the milk. How did you help him discover the stressors in his life? What a great improvement for your husband. Best of luck to you two.

Julee70: You make a good point. I think it is better for him to at least feel good about what he is eating. The funny thing is my husband does not get nervous about eating a particular food, b/c he doesn't know what affects him. However, he does get nervous to eat in general. I sure hope we find the magic combo.

Judy-Actually, it does sound like you and my husband have similar issues. Thanks for the great advice. I never looked at it this way. I didn't realize my trying to help could actually be debilitating for my husband. I need to be more careful. It's a very difficult disease for everyone to cope with. I don't think he is depressed, but with this disease there are so many ups and downs. We recently had a baby and I think he feels b/c of UC he cannot do certain basic things with the baby (ex. going to the park)...this may get him down sometimes. I guess I wish he was more proactive about his disease...I know easy for me to say, but I wish he would have the motivation to find out what natural things he could be taking to help him or at least believe in those natural things.

One last question: It seems not many people are on Colazal...Asacol seems to be more common. Any idea why docs. pick one over the other??

SORRY!! This turned out to be way longer than I intended. Thanks again for listening! I really appreciate it. I feel like you're the doctors we never had...ones with emotions,care, and so much knowledge.
Posted 2/23/2008 7:37 AM (GMT 0)
I think they start with Asacol because it's been around for a while now, and at least until Colazal came out in generic form, was less expensive. Typically, Colazal has been given only if the Asacol doesn't help or if the person can't tolerate it. Also, some people dislike taking Colazal because the capsules are so large.

I'm firmly in the eat whatever you want as long as it doesn't bother you camp. His GI can test for lactose intolerance if that seems to be an issue. It is more common in people with UC than the regular population, but not all of us have it.

He's very lucky to have your support. How sad it is that he doesn't feel like doing things with the baby! I hope the Humira works and he's soon able to enjoy the pleasures of fatherhood.
Posted 2/23/2008 12:40 PM (GMT 0)
Hi and welcome to HW Uc Spouse :) I agree with Judy in that Asacol has been around for a very long time and is a trusted medication but some people just don't respond well to it. I was on Asacol for years when my colon decided that it didn't like it anymore so my doc switched me to Colazal. I've been on that now for 3 years and Colazal has been out for 6 or 8 years (wow, it's been that long already?!)

Has your husband ever tried steroid enemas? What about immune suppressors such as Imuran or 6mp? Is he on any other sort of probiotic at this time? If not, he or you, might want to start looking into them because what happens in Uc is that our colons have an overabundance of bad bacteria. When we take a probiotic, it substitutes the bad with the good which in turn can allow our colons to heal easier.
Posted 2/23/2008 10:21 PM (GMT 0)
In my experience, when in a serious flare right after diagnosis, he won't be able to tell much how food affects him because the colon's in such an extreme state, just about anything has the potential to be irritating. I feel dietary modifications are very important in managing UC, but they're not a quick fix like pharmaceuticals - particularly steroids - so you can't expect immediate improvements. I also feel diet must be used in combination with other key therapies like probiotics and natural anti-inflammatories - in addition to the drugs his GI prescribes.

And yes, some folks do find restrictive diets, especially ones that involve alot of cooking from scratch and work, to be so stressful and upsetting, they can have an adverse effect. Author Jini Patel Thompson talks about trying the Specific Carbohydrate Diet and giving it up after a year's honest effort because it was so personally frustrating to her. After an initial improvement, she felt symptoms were returning largely because of her increased stress level. So, you have to figure out what works for your husband's unique condition and your lifestyles.

My best advice is to read several IBD diet books, weigh the evidence and decide which one you'd like to try. Jini's book Listen to Your Gut has several diets based on symptoms, the Specific Carbohydrate Diet works very well for some folks (Breaking the Vicious Cycle is the book) and The New Eating Right for a Bad Gut has less restrictive recommendations, with a focus on increasing omega-3 intake to reduce inflammation. And there are others. Whichever route you go, keep in mind that you'll have to stick with it for quite some time to get his situation turned around.
Posted 2/28/2008 6:06 AM (GMT 0)
Those of you who did take Asacol and switched to Colazal: Did you notice any difference when you switched from Asacol to Colazal? What is the point of Colazal? Is it a maintenance drug? You know, it's not that my husband does not want to do things with the baby, it's that the UC comes in the way. He cannot take the baby to the park or beach b/c of the fear of no bathrooms, but he does enjoy spending time with the baby.

My husband did try steroid enemas for a bit, but they seemed to have no affect. He is on Humira which is a strong immune suppressant. As far as Probiotics, unfortunately, he is only on fish oil and eat Danactive quite regularly. Frankly, he feels he is already taking so many meds. that he feels he cannot add more things to take. But, I will try to encourage him to take more probiotics. Can you guys please suggest some that you have found to be effective?

I have bought a few of the popular IBD books. THey didn't seem that helpful b/c their advice was so different from one another. It added more confusion to our already confused minds. It even suggested recipes that required quite a bit of butter and parmesan cheese.
Posted 2/28/2008 1:55 PM (GMT 0)
I take Primadophilus Reuteri by Nature's Way. It's inexpensive, easy to take (one capsule a day) and has worked well for me. If he can eat the Danactive every day, that may also be some help.

Colazal is a 5-ASA drug which serves the same purpose as Asacol, which is inducing and maintaining revisions, as well as lowering the risk of colon cancer. Generally it is prescribed when a person can't tolerate Asacol or the Asacol isn't working.
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