New Member.

  Hello All:

  I'm 26 years old and I was just diagnosed with UC (involving 8 inches of the rectum only), a week ago.  I am currently taking 40mg of Prednisone (with a stepping down method every two weeks),Asacol HD 800mg at 3 times a day, and Mesalamine enemas (which I can't seem to keep in longer than a minute).  I feel like there is no "feeling great" in sight.

  This condition has me feeling very fearful of the future, isolated, and alone.  I am currently in college, and have a long road ahead; I just want to live a good productive life!  I have lost about 10lbs. in a week, and have found a plethora of conflicting diet advice for this disease.  Since "everyone's body is different," I will just have to try different things.  I have been eating cantaloupe, honey dew melon, organic applesauce (no sugar added), and sparingly a lean cut of fish.  It seems that carbs thus far, when I have tried Buckwheat (gluten free) waffles have proved to make intestinal gas and pain.

  I was hoping to get some input from people here that didn't have all the "doom and gloom" stories.  You read on the internet about the symptoms, and you don't really understand the severity until they hit you, however, there has to be people on here with UC that bust out of their first "flare," and are able to feel normal again (besides the occasional flares)?

   I'm really curious what the average length of time is that it takes a patient diagnosed with UC to feel semi normal, enough to resume everyday life, after their diagnosis.  Again, I know that medical recovery times will vary between individuals...

  If any of you can remember how long it took after you started your medications to feel better, I would greatly appreciate your input.

  Thanks!

  Nick

 

Hi Nick, and welcome to the forum! I'm sorry about the diagnosis. It's a tough disease, and because it is so individualized in terms of what helps or not, that makes it even tougher to deal with.
How long have you been on the meds?
What in particular are your symptoms?

A food diary might be helpful.

Personally, I would have trouble with that much fresh fruit - that would cause me discomfort and looser, more frequent stools. Now that I'm in an almost remission, I'm eating cantaloupe, but I have to be careful about how much I eat. I do better with cooked veggies, chicken and fish. I've read that canned fruits are kinder, but in a real flare, I can't tolerate those, either. Bananas are my gentlest fruit. Spinach will solidify my stools a lot.

How long... is quite a question, and there are so many variables. I can tell you that my onset flare was my worst, whether that's just the way the UC has gone with me or because I've been good about taking maintenance meds so the subsequent flares have been milder. Also, one learns to spot flares as they begin. Starting flare meds earlier in a flare has helped me avert worse flares, also.

Can you do dairy? I do well with homemade yogurt. My GI 25 years ago had told me to eat lots of white food - pasta, potatoes, etc.... but if carbs are bothering you, that wouldn't work for you! Have you read about the Specific Carbohydrate Diet? Your comment about carbs might indicate that might be helpful....diet doesn't particularly affect my UC, but others have amazing stories of how the SCD has helped them.
We all respond to different things.
Probiotics have helped me enormously, and also I take psyllium husk to bulk up the poops.

This is a great place to discuss all things UC... and conflicting diet advice? Yup, you'll find that here, too - because we all respond differently. Ask any questions!

FutureMD:

When I was first diagnosed, I too had an extremely hard time with the diet, everything I tried didn't help. I too was on Asacol in the beginning, but I ended up in the hospital. There I discovered that the Asacol wasn't helping me at all. They switched me to Remicade while in the hospital, but once I got out I became allergic to it. I snapped out of my flare within 7 months of being diagnosed. I get seasonal flares, but other than that I'm completely fine. All the sites you search for for information can be helpful, but it's not a guide. This disease has a "mind of it's own." When one food triggers someone it doesn't trigger a reaction to another. I would try softer foods until you see some improvement. Have you cut out dairy? If not, try pulling away from it for a while. I found out that I'm lactose intolerant, but very minor, just liquid form and uncooked.

My signature tells all about my flares and how long they last, so hopefully that can help you, but everyone is different.

Hi Future -
My first flare lasted a long time - I was up and down for about 8 months until I pulled out of it, but that was a long time ago, and there were a lot fewer medications (no rectal enemas, for instance.)
When my son was diagnosed 3 1/2 years ago, he was dxed in May, started pred and asacol, and was some better within a few weeks - was able to go to camp in the summer.
He has been fine since, with one one slight flare last spring, although he'll have random "stomach aches" and miss a day of school here and there (even though he's not pooping extra or vomiting or anything... just uncomfortable.)

For me, besides that first flare, I've not missed work. Since my diagnosis I had two children (now 20 and 17), took up horseback riding and semi-professional singing, have changed jobs a time or two.... I would not describe myself as a sick person. Flares may make me get up earlier in the morning in order to allow more bathroom time before leaving for work, and I may be more of a picky eater at business lunches, but I generally keep going.

Diet wise, I just can't worry about things to the extent you seem to be. If tilapia is the protein I can tolerate, I'm not going to worry about heart damage - I figure getting the nourishment to get out of the flare is my first priority.
I eat sugar. I've heard of too many UC folks having issues with artificial sweeteners. And I've never had any issues with dairy.
I think we can't stay away from everything that gives "someone" an issue - there'd be nothing left to eat! We each need to see what bothers us as individuals.

Even when food fiber is bothersome, I take Metamucil - have each day for 24 years; when I give it up for 5 days prior to colonoscopy, I am in discomfort, my poops are less formed and harder to pass, I have sort of involuntary straining. So... we each need to find what works. But.... we do have to eat...!

I have not heard of people dying of UC, except that there is a long-term increased cancer risk... which is why we have more colonoscopies than most folks.
Have you checked out ccfa.org for some facts....?

Just wanted to mention since you are newly diagnosed to be careful of NSAIDS and antibiotics!  As much reading as I did when I was first diagnosed, I learned my lesson from experiencing flare ups from both of these on different ocassions later in my UC life.

A lot of people with UC also swear by taking a fairly strong probiotic.  Each flare is different.  Your first flare up may not be your worst unfortunately...my first was not my worst.

I was pregnant with my first flare up so it lasted about 6 months before I gave birth and could go on some different meds.

I also was unable to retain the Rowasa enemas and have good luck with Canasa suppositories.  However they don't get up as far, but sounds as though you may not need that.

Good Luck!  I've come to the forum for the last 9 yrs since diagnosis for great info. thru the years of learning and testing med's. 

Lana

 

Songlady:
I'm glad you responded! I feel much more comfortable after hearing that your son recovered so quickly. I just worry about getting through many years of schooling and medical school, and I don't want to be sidelined from life because of a disease. Nobody does.
I firmly believe diet has a great deal to do with the manifestation of the disease, but that is an entirely different discussion.
Before being diagnosed with UC, I went to the gym 5 days a week and ate a ridiculously clean diet. I was always in the prototypical "beach shape." My lifestyle changed as I started taking harder classes in college, and I began overeating at fast food joints (multiple times a day, for about a year). It is no surprise to me that I am afflicted with this awful disease. Though western medicine says otherwise, I firmly believe the trans fats and harmful products found in our food influences this.
Anyhow, I am glad that you live a productive life and hope to do the same!
I will definitely check out ccfa.org! Thanks.

everyone here has given you great suggestions. I want to jump on the probiotic bandwagon and suggest that you take probiotics as they can truly help with overal bowel function. Within a week of taking them when I first started (5 strains at 10 billion count) I noticed a difference in how I felt. Now I take probiotics with 40 billion count and 15 strains of bacteria. When I broke my knee a few months ago and was on antibiotics, I upped my probiotics and also ate greek yogurt twice a day and had absolutely no side effects of UC symptoms!

Also do a search of anti-inflammatory foods and introduce them into your diet. My "go to" food has been fresh pineapple. Every time I eat it, even while in "remission" I just feel a bit better overall. Of course, everyone is different. Some may not be able to eat it because of the natural sugars in it.

Wild salmon, olive oil, spinach, cherries, berries, onions, tumeric, green tea, sunflower seeds, nut butters (cashew is my favorite :), sweet potatoes ... these are just a few of the anti-inflammatory foods that did well with me. I typically avoid anything fried and I eat a lot of chicken and fish. Since my in-laws raised a few cows, my family goes in with them on the cost of butchering them so now we have very lean beef, grass-raised, knowing there are no antibiotics or growth hormones. Same with eggs. They raise laying hens and it is amazing how much more orangy the yolk is with chickens that are raised on natural grasses and bugs instead of grains that the farms use.

Hope some of this helps you! It did for me ... it will take a bit of a process before you have a ready list of "go to" foods and drinks that are safe without worries.

Agreed Songlady, I grew up on whole grains, balanced healthy meals, and never was one to imbibe in fast food and I ended up with UC too. No history of antibiotic over-use either. Since surgery I've met many life-long healthy-eating vegetarians who have lost their colons due to UC. Diet may help in relieving symptoms but I don't believe it causes UC.

Sue

I was diagnosed just about 18 months ago, after a flare that had increased in severity for several months. After a few weeks on Lialda and after beginning acupuncture, my flare subsided and I was in remission for almost a year.

I have mild/moderate UC to the midtransverse colon. My current (second) flare is proving harder to get under control, but, fingers crossed, I think I'm teetering on the edge of remission. I'm on the full dose of Lialda (4.8 g/day), and I started corticosteroid enemas last week. I was on 40 mg of prednisone for a couple of weeks in July and slowly tapered off. While the prednisone immediately stopped the bleeding, every time I would lower the dose, the bleeding would start up again. I really don't want to be on prednisone a minute longer than I must, for a whole host of reasons, but at my doctor's recommendation I'm continuing on 2.5 mg daily for at least another couple of weeks.

I don't think that anything in or around my diet contributed to the onset of UC. I have always been aware of my food intake and I live in SF, where organic and local foods are readily available. Although I'm not a vegetarian, if you watched me eat most of the time you would have thought I was probably a vegan. Also, I'm very physically active. UC sidelined me for a while but I'm building muscle and endurance again now, as my second flare is easing. Also in the last year, I had surgery & radiation for breast cancer, and then I decided to have reconstructive surgery, which ended up being 3 surgeries, one on an emergency basis, and kept me scared of my body and out of the gym for almost 6 months this year. Very frustrating.

I blame my second flare on the stress surrounding the reconstructive surgery. I got through the cancer diagnosis & treatment just fine so I thought I was superwoman, impervious to stress. Well, hmmm. Maybe not. At any rate, I've learned a lot during this flare about how to live with UC *while* trying to manage it. I've never had to stay home from work because of it, but I have a comfortable work environment, with a bathroom near my office. It has had a slight effect on my relationship with my boyfriend, but he's a trouper and very adaptable to circumstance. At its worst, I was arising 3 or 4 times a night (turning over in my sleep seemed to be a major trigger) and racing to the bathroom 10 - 15 times a day. I know that what I experience is far more mild than what many on these boards do, and yet I also know what you mean about not being able to think of anything *but* the discomfort & fear. I mentioned to my boyfriend one day that I had gone an hour without any pain or worry and it was like a big burden had lifted. It came back, but it showed me light at the end of the tunnel.

After messing around with a variety of diets that make sense but didn't work, I went onto a diet that kind of doesn't make sense but does seem to work for me. At heart, it's the low residue diet, but basically it means that I only eat foods that are white in color (or close to it). I eat cottage cheese, yogurt, rice, pasta, cream sauces, eggs, and sometimes a little chicken or turkey breast and sometimes a little fish. There are certain fruits I simply cannot eat, and nuts are the worst! But I do seem to be able to eat a little canned fruit, such as peach slices or pears packed in their own juice, no sugar added. When I told my boyfriend that I was trying to avoid vegetables, he almost fell over. He's Puerto Rican and he eats meat at every meal, but he knows that I'm the exact opposite. Normally I limit everything *but* my vegetabe intake. However, it seems to help so for the time being, I'm going with it. We went out to dinner on Saturday with some friends and I had vegetables for the first time in a while. I was uncomfortable again last night and this morning, but nothing like it's been in the past, so I think I'm still on the upward swing. I don't expect or intend to stay on this diet after I'm in remission, but I'll certainly keep it in my back pocket for the next flare.

This disease is completely unpredictable in the respect that some people's first flare is their worst and it just gets milder and easier as time goes by. Of course, be clear those are not the people who will post on these boards. I myself was able to forget about the disease for almost a year before my second flare began. Of course I'm feeling more optimistic now that I think I'm close to remission, but it has also been true for me that it's much more productive for me to consider treating what is going on in this moment than it is for me to project much further into the future.

Thanks! I hope I start to feel better soon as well. I'm really glad I joined these forums. It is so nice to talk to people that know what I am going through, and can offer such great stories, advice,etc.

Hi Nick,

I am also 26 and have just been diagnosed with UC in my whole intestine track =( I am so sorry you are going through this as well. I was diagnosed at the end of my pregnancy June 2010-so Im still new at this too. Ive been trying wheat, dairy & gluten free diets. There is a book called "Eat Right for Your Blood Type" that has seemed to help me a little bit too. I seem to have little flare ups still every now and then. Ive been on a steroid called Entecort and seems to work better than Acacal that I had been on before. I would love to read more on your posts as you find out new information too.
Good luck in college - its gotta be hard going through this while you are so busy. I feel your pain. Hang in there.

From, NewMama

I was 23  (1991) when I was first diagnosed with UC.  At the time I was in grad school.  I recall dragging all of my books into the bathroom with me and trying to work while having painful bloody d.  I think I was in my first flare for a couple of months.  The good news is that i did not have my second flare for 10 years! In between I felt compltely normal, ate whatever, no p[roblems.  In those 10 years I had so much stress too, I finished grad school, got a real job, got married, bought a house, had 2 kids, lived through very stressful financialy lean times. My second flare up again lasted  a few months, and I used rectal meds and asacol to come out of it.   More good news though, no flare up for 5 years, again, completely nomral in between, and I am ashamed to admit, not compliant with my meds at all.  Then 2 more uc free remesision good years and a few months flare up, rwhich resolved nicely with asacol and rectals.  So, 3 flares in 17 years.

During my flares, I would have 10-18 bloody painful urgent bms a day.  My doc says I have a moderate case.    I dont call out from work or change my day becasue of it, I just always know where a bathroom is and I just go to the bathroom ALOT.  luckily At work, I am steps from a bathroom.  When I am at home I rest and relax as much as possible.

However, I have now been flaring off and on(mostly on ) since 2008.  I am really starting to feel better, I think I am at 95% now.  Here are some things I have learned:

1.  Everybodys UC is different and  even your own UC flares can be different from one flare to the next.  So, pay attention to your body and what bothers you.

2.  For the first 17 years I had UC I will swear up and down that diet and stress did not make any difference on my UC at all.  However, MY UC since 2008, I will swear up and down that my diet and stress inflame my system.  I noticed a HUGE difference in my UC symptoms (reduction in bloody bm's within a day) once I cut out coffee, black tea and dairy.   Diet and stress may not have anything to do with your UC, but it is worth it to keep a FOOD DIARY and see if anything does bother you.

3.  Remission is possible, have hope!!! And for some people, during remission they feel completely and totally fine.  I think that the people that have had flareups and are in remeission and feel great probably arent the people who post here.  My guess is that alot of posters have UC which has been hard to manage.  Just a guess though, dont want to offend anyone.

glad i could help. 

if you can't do the rowasa enemas, you may want to ask your gi dr for canasa suppositories.  These are mesalamine supps, and you can use one at night and one during the day. 

I also recomend getting a probiotic. I am using primodophilus reuteri (sp??) by Natures Way.  But there are tons of others.  My GI dr recomended VSL #3, as it was clinically proven to help UC.  Alot of people on the boards use it, it is kind of pricey though. 

What kind of dr do you want to be?