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jrosollo posted:
Hi everyone I am 25 years old a mom of a 5 year old a part time employee and part time college student. I am reduced to only working two days a week and going to school online because of my UC. I was diagnosed exactly one year ago. When I was diagnosed I kind of had this attitude of "forget this" I'm too young to worry and deal with this so I didn't eat right nor did I care about what I was doing or putting in my mouth. Finally it hit me how serious this was when I had a very bad flare up that kept me bathroom ridden for 24 hours. So, now i have been exercising and eating as healthy as possible. I totally have cut out the fast food and spicy food and started doing my wheat grass shots. as well as taking vitamins and taking my Lialda consistently instead of when ever i felt like it. I noticed a big reduce in my bleeding, to like only once a week. But I noticed i can't hold my bowel movements. Is that just a normal side affect that i will have to get used to? Because once I feel that "shiver" I am gone fast to find a bathroom. It is very embarassing and i have had accidents and i am fearful i may need to wear depends for work. also will i never have solid stools again in my life? i see my son use the restroom and am finding myself jealous of his quick healthy bowel movements HAHA. I pray he never has any health issues. to be honest i wouldnt wish UC on even the worse person in the world. and is it just me or does the cold affect our condition? I work in 40 degree wether preparing food and notice once I hit that cold air i am cramping a lot. is that just silly or is UC affected by the cold? Id really love some insight to these questions i have. I am making another appointment with my doctor to get something in writing saying i have UC becasue I have had to call off recently due to a flare up. Thankyou all for being so open and helpful here. I dont know anyone with this and at 25 it is embarassing and hard to cope with. it has made intamacy difficult and my confidence has been really affected. now recently hemorrhoids have appeared. im so glad i found this outlet with other people like me thankyou all!
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hannahleigh89 responded:
Most people with UC do tend to have consistent diarrhea with some urgency issues. You say that you are eating right and are doing wheat grass shots, which is awesome, but I do feel that those could be contributing to your urgency. A lot of the people with UC tend to have trouble digesting raw fruits and vegetables, and they send them running to the bathroom more frequently. I'm curious if you use any bulking agents, like Metamucil or Benefiber? I can't use them anymore because I have incredible gas when I do, but for a while, the little Metamucil cracker things kept me from spending all night in the bathroom. I would take my nightly medications and eat a package of crackers (each package has two) with a small glass of milk, and I was set for the night.

I'm just curious what other kinds of fiber you eat. Bread and pasta and things like that tend to slow down digestion, but they are also not considered healthy and if you are primarily eating fruits and vegetables, I fear that may be increasing the diarrhea.

I am by no means suggesting that you stop doing it. I am incredibly jealous that you have been able to tolerate it, because I've tried several times to switch to a healthier diet, and I end up sick and unable to eat at all every time. But I'm not a typical UC patient either.

And I agree that cold seems to intensify the cramping. I think it's because when you are cold, your body naturally tenses up and shunts blood to your brain and heart, and it reduces the blood supply in your bowels. That alone can cause cramping, so if you already have problems with it, I could definitely see that making it worse. I currently take Bentyl for bowel spasms, and it helps me quite a bit.
 
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jrosollo replied to hannahleigh89's response:
Really raw fruits and veggies? I didn't even know that! Maybe I should reconsider my diet. I just figured I should eat healthy and although my bleeding has lessened tremendously I still go frequently. So what types of foods are better for us to eat? I was only diagnosed last year and need advice. It helps that other kind people with this are out here because I don't know anyone with uc.
 
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hannahleigh89 replied to jrosollo's response:
Yeah, raw fruit and vegetables wreak havoc on me. I ate a hand full of grapes and two baby carrots today and I've been in the bathroom every ten minutes ever since. You'd think I'd have learned by now, but it's just too yummy.

They generally recommend during a flare to eat what is called a low residue or low fiber diet. To help with diarrhea, they recommend things like white bread, white pastas and rice, and bland foods. Bland as in not a lot of fat or seasoning, and also not a lot of crunchy. I do well with dairy but most patients don't, but I tolerate milk and cottage cheese and yogurt just fine. They are safe foods for me. I can also eat a lot of cereals that don't have a particularly high fiber content. I do okay with Rice Chex, Honey Nut Cheerios, Corn Flakes, Fruity or Cocoa Pebbles... You know, mostly the real sugary crap that is terrible for you.

I do well with potatoes- baked potatoes and mashed potatoes are some of my safe foods. Macaroni and cheese. Chicken. Most of the stuff that is low fiber is actually bad for you, so it's kind of a balancing act. You can Google low fiber or low residue diets if you wish. The goal is to eat those while you are flaring and then when you are in remission, you should be able to eat a diet closer to what you are used to now.

One food that I absolutely cannot eat is Lays potato chips. I can eat the ruffled kind, but not normal Lays. My dad (similar to my history) has the same issue. I bleed for days.

I do tolerate bananas well, and my doctor has recommended several times to make a sandwich out of white bread, peanut butter, and Fluff brand marshmallow cream and to put not quite ripe bananas on it. It's supposed to help stop the diarrhea. I don't like peanut butter and the idea of eating a marshmallow sandwich was not one I could stomach, so I don't know if it actually works or not.

I'm only 23 but I was diagnosed probably 8 years ago now and I've been having trouble since before that, so I'm sort of adjusted to it. I've been through a lot of surgeries and medications, and I know exactly what you mean about how it shouldn't be an issue because you are so young. You should be able to eat healthy, and it shouldn't make you feel sick. You shouldn't have to worry about having accidents. You shouldn't spend most of the day on the toilet. But unfortunately, it doesn't work that way for us, and we have to have time to adjust to that.

Once you find a diet and medications that work well for you, things will return to a semi-normal state that you will get used to. It just takes a while. And there are a lot of knowledgeable people here more than willing to offer advice.
 
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jrosollo replied to hannahleigh89's response:
Oh my god Hannah you are the best and have been very helpful at that. I just started doing lots of research on what I should and shouldn't eat and I'm sure my body will tell me the rest. I'm really hopeful about changing my diet and being more serious about this because for the first year I really didn't care about my health and I had a bad attitude about it. But it only made it worse I want to get to a point where I can just go to my sons basketball game without having to leave to use the restroom. It's about time I took my health seriously. Thanks so much for your help.
 
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miserable_sob replied to jrosollo's response:
You're very lucky you have the internet to find alternatives with now. I wish I could have used it 25 years ago (it didn't really exist then). That's when I made the bad decision to amputate my colon because of UC. Living with no colon is worse than having UC. In fact I only wish I had my diseased colon back now so I could try VSL3 in it or I've heard how people are getting fascinating results using fecal transplants too. I'm so upset with this J Pouch now, I just wish I was dead already.
 
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jrosollo replied to miserable_sob's response:
I'm so sorry for your situation and im sure there are lots of people who are thankful you are still here and i admit at my worst flare up i wished i was dead too the pain is unbearable sometimes. I hope I can find something that will work for me. I'm very interested in these probiotics everyone is talking about. Do you know anything about them?
 
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miserable_sob replied to jrosollo's response:
The first thing I'd try if I were in your boots is fecal transplants. Just Google fecal transplants and see for yourself how successful they've been.
 
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sickofhurting responded:
Hi,
I am 49 years old and have been having problems similar to the ones you have described. I have been to the ER several times for diarrhea and keep getting told that I am suffering from constipation. My symptoms actually go back and forth between the two, but is mostly diarrhea. I went to the Urgent Care Center yesterday because I have had diarrhea for the past two weeks and yesterday had swelling or bloating along with severe abdominal pain. I have lost 7 pounds in the past week and a half and my stomach has gotten bigger. Yesterday they said I have IBS, which my symptom do fit; however, I still think there is more to it than that. I've been having chills and I stay exhausted all the time. My GYN doctor scheduled me for a cat scan so I am hoping to find out more then. I also have an appointment with a primary care doctor next week. My rectum is so sore that it hurts to even try to wipe it. This has been going on for close to a year now and it is only getting worse. Reading these posts has helped me to know what questions I need to be asking the doctors an also let me know that there is a place I can talk about these problems.
 
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hannahleigh89 replied to sickofhurting's response:
Hello, sickofhurting. For your rectal pain, I would recommend sending someone to a pharmacy and getting calmoseptine (or some other kind of zinc oxide ointment) for your bum. If you can't find any of that, diaper rash cream (like A&D) will help some, too. Also, when it gets to the point where it hurts to wipe, you can try dabbing with the toilet paper or even a damp wash cloth to help clean yourself without more trauma to your bum. Some people have more luck using baby wipes, but be careful to get the sensitive ones because regular ones sometimes have chemicals that can actually make it hurt worse.

They should be able to tell some from the CT scan, but I think you need to see about having a colonoscopy to make sure you don't have some kind of inflammatory bowel disease.

Until you get some answers, I recommend trying to rest your bowel some. Try to stay away from any harsh foods (raw fruits and vegetables, whole wheat bread products, anything with a lot of fiber, anything crunchy, anything extra spicy) and drink lots of fluids. Try to get something with some electrolytes in it- Gatorade or Pedialyte. Stay away from juices that have a lot of added sugar because they will give you some nutrition but sugar makes diarrhea worse. Foods I do okay with during a flare are like, mashed or baked potatoes, white rice, white pastas, yogurt, cottage cheese, white bread. Maybe try some of those and see if that will help with the weight loss.

Let us know if you have any more questions, and welcome to the board.
 
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darkntall replied to jrosollo's response:
hello jrosollo,

i have had crohns for a 16 years now with only 1 surgery and a few flare ups...I have been taking swansons ultimate probiotics with some very good results. its the best quality probiotics that wont break the bank. You get 30 capsules of 66 billion colonies of good bacteria for only around $15. You cant find that many colonies for that price! You might also want to try swanons beta glucan and phamacuetical grade glutamine. THESE 2 SUPPLEMENTS HAVE BEEN A LIFE SAVER, PHYCIALLY AND FINANCIALLY! The price of that many pills coulnt fit in my budget but these 2 supplements have allowed me to function on 2 pentaza pills/day instead of 8 with great results, even after my latest blood work test by my GI doctor. He said everything looked good! I did some research and found out that glutamine stregthens the protective lining of the intestines by feeding the cells of the protective lining. Beta Glucan keeps your immune system stablized so that it wont go into survival-of-the-fittest mode, which is what a flare up is.

Here are the links them:

http://www.swansonvitamins.com/lee-swanson-signature-line-ultimate-probiotic-formula-3-pack-3-30-ct-bottles-veg-caps?otherSize=SWL008
http://www.swansonvitamins.com/swanson-ultra-ajipure-l-glutamine-pharmaceutical-grade-500-mg-60-caps
http://www.swansonvitamins.com/swanson-ultra-betaright-beta-glucans-250-mg-60-caps
 
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jrosollo replied to darkntall's response:
Oh my gosh thankyou!!!!! Darkntall! So much! I've been researching these probiotics so much and have heard nothing but good things. I'm very excited to try them and couldn't get any to tell exactly what kind they were using. I'm very excited and thankyou for answering my main question and making my day
 
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hannahleigh89 replied to jrosollo's response:
I don't know anything about probiotics. I've tried a few different brands and did not have any success with any of them. Hopefully your endeavors work out better than mine, lol.
 
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darkntall replied to jrosollo's response:
jrosollo ,

just remember to take them with food as the instructions say or they wont work properly!
 
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miserable_sob replied to darkntall's response:
3 years ago I used Swanson's Ultimate Probiotic too. It was ineffective in my situation. The only good news there is since I'm operating without a colon, my situation is quite different than yours. Whatever you do, don't give up the fight, and hang on to your colon. Because once you lose it, you're a slave to the laws of physics.


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