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candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/7/2007 6:38 PM (GMT -7)   
sad  I am new here. I was really depressed and was looking for someone who could identify with my feelings. I have had ulcerative proctitis for 17 years, during the last 10 I have also suffered from IBS. The two together are almost unbearable. I am to the point that I can eat almost nothing-no veggies, no fruits, no dairy, no beans, no spicy things, no nuts, no popcorn, no carbonated drinks or caffeine. I eat like a bird and I feel so deprived. Does anyone else out there have to avoid all these foods? I sometimes take vicodin for the pain which actually worsens my condition. Any medications make me worse. I try to use all natural things which works pretty well. I feel so alone. I live in a small town and know no one that suffers as I do. Can anyone help me?

happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 11/7/2007 9:03 PM (GMT -7)   
I Feel Your Pain about The Small Town Thing.  I Eat What Ever I Want Just Small Meals & I Avoid Spicy Foods. Good Luck!!! I'm On The East Coast What about You?
Mild case of UC~04
Left Side Colitis~05-06
Pancolitis~07
 
6-mp 50mg ~ 1 pill a day
Mesalamine 4gm ~ 2 a day
Prednisone ~ 40 mg For 2 Weeks then tapper by 5mg
Asacol 400mg ~ 8 pill a day
Bella Alk/PB 16.2mg ~ 8 pills a day
Iron 325mg ~ 1 a day
Lexapro 20mg ~ 1 a day
BirthControl ~ 1 a day
 
Doctor Says If This Dosen't Work Then Remicaid Next ~~~ If That Doesn't Work Then Surgery.  
 


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/7/2007 9:08 PM (GMT -7)   
I live in boring Kansas. I do eat small meals too which eases the discomfort. Thanks for the reply!

happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 11/7/2007 9:20 PM (GMT -7)   
Don't Worry I Live In NC ~ Good Luck & I hope You Start Felling Better. What Kind Of Meds. R U On?
Mild case of UC~04
Left Side Colitis~05-06
Pancolitis~07
 
6-mp 50mg ~ 1 pill a day
Mesalamine 4gm ~ 2 a day
Prednisone ~ 40 mg For 2 Weeks then tapper by 5mg
Asacol 400mg ~ 8 pill a day
Bella Alk/PB 16.2mg ~ 8 pills a day
Iron 325mg ~ 1 a day
Lexapro 20mg ~ 1 a day
BirthControl ~ 1 a day
 
Doctor Says If This Dosen't Work Then Remicaid Next ~~~ If That Doesn't Work Then Surgery.  
 


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/7/2007 9:25 PM (GMT -7)   
I don't take any presciption meds. But I do take chlorophyll, aloe juice, clt-x, I-X, IBX, liquid calcium, omegas, iron, vit c, biotin, and a liquid multi. After losing most of my hair, I have to take iron daily. For the last week I have taken nothing. I am sick of taking pills. I'm sure you all feel the same way.

happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 11/7/2007 9:34 PM (GMT -7)   
I hear you & I stopped & then I got worse. So i'll keep taking them for now until i have the surgery. I've have a 3 year old & a 10 year old & i'm tired of my 3 year old telling me, Mommy i need meds. too. So how is that treatment working out for you?
Mild case of UC~04
Left Side Colitis~05-06
Pancolitis~07
 
6-mp 50mg ~ 1 pill a day
Mesalamine 4gm ~ 2 a day
Prednisone ~ 40 mg For 2 Weeks then tapper by 5mg
Asacol 400mg ~ 8 pill a day
Bella Alk/PB 16.2mg ~ 8 pills a day
Iron 325mg ~ 1 a day
Lexapro 20mg ~ 1 a day
BirthControl ~ 1 a day
 
Doctor Says If This Dosen't Work Then Remicaid Next ~~~ If That Doesn't Work Then Surgery.  
 


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/7/2007 9:42 PM (GMT -7)   
It works better for me than the prescriptions. Plus my doctor was mean and he lives an hour away. I've been self-treating for many years. My children are 8 and 6 and my daughter worries about me constantly. She wants to take care of me. She has asked me if I'm going to die or if I have cancer. I openly explain everything to her but reassure her I will be fine, just am suffering, and hope to be better soon.

happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 11/7/2007 9:53 PM (GMT -7)   
Ya my oldest daughter is the same way & she stresses out alot but i'm up front w/her. Cause i don't want any surprise, shes my buddy but i tell her that i'll be fine too & she sees right through me. I'm only 29 so her & i are pretty close. But she helps me so much. My husband too. I'm greatful.
Mild case of UC~04
Left Side Colitis~05-06
Pancolitis~07
 
6-mp 50mg ~ 1 pill a day
Mesalamine 4gm ~ 2 a day
Prednisone ~ 40 mg For 2 Weeks then tapper by 5mg
Asacol 400mg ~ 8 pill a day
Bella Alk/PB 16.2mg ~ 8 pills a day
Iron 325mg ~ 1 a day
Lexapro 20mg ~ 1 a day
BirthControl ~ 1 a day
 
Doctor Says If This Dosen't Work Then Remicaid Next ~~~ If That Doesn't Work Then Surgery.  
 


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/7/2007 10:00 PM (GMT -7)   
My daughter is close to me also. She seems to know what's going on with me without even telling her. I'm 32, close to your age. I rely on my hubby alot, I don't know what I'd do without him. He's very understanding.

happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 11/7/2007 10:14 PM (GMT -7)   
I'm so happy that you have that, I would be lost without my family also. It took him 3 years to finally realize that his wife is sick. But now that he does he is so helpful. But i guess it did't help when i wasn't open w/ my feeling about what was going on w/ uc. I just felt like i was putting more on his plate then i though he could handle. & he's a firefighter. But i hate for people to worry about me. Do you get like that?
Mild case of UC~04
Left Side Colitis~05-06
Pancolitis~07
 
6-mp 50mg ~ 1 pill a day
Mesalamine 4gm ~ 2 a day
Prednisone ~ 40 mg For 2 Weeks then tapper by 5mg
Asacol 400mg ~ 8 pill a day
Bella Alk/PB 16.2mg ~ 8 pills a day
Iron 325mg ~ 1 a day
Lexapro 20mg ~ 1 a day
BirthControl ~ 1 a day
 
Doctor Says If This Dosen't Work Then Remicaid Next ~~~ If That Doesn't Work Then Surgery.  
 


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/7/2007 10:19 PM (GMT -7)   
Yeah, my mom calls me everyday like a freak to ask how I am. I lie to her a lot. I play it low key. Alot of my friends don't know how sick I am. It's not like you go around yelling, "Hey, I pooped my pants today, how about you?" I was already sick when I met my husband so he kinda knew what he was getting into. I'm sure he has a greater appreciation of it now. He's very sweet about it, he just calls me "poop girl". Nice, huh?

happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 11/8/2007 12:04 AM (GMT -7)   
That's funny about your husband, Mine won't joke cause i think he's scared of how i feel. But i try to joke about it all the time, cause what can we do? STRESS about it. NOT ME ANYMORE !!! & yes i have bad days but i get over it. My mother & father -in- law worry about me alot but i don't always tell them how i'm always feeling either. Do you ever feel think they get tired of hearing about it? In a nice way. Maybe it's me but i feel like that some times. Well sorry i didn't respone back sooner but i had like 6 loads of laundry to fold. Everybody is a asleep and thats when i like to get things done even it means i only get a few hours of sleep. Mommy Time!!! :) It's been so nice talking to you, Thank You!!! Do you have a MYSPACE? Well ttyl jo
Mild case of UC~04
Left Side Colitis~05-06
Pancolitis~07
 
6-mp 50mg ~ 1 pill a day
Mesalamine 4gm ~ 2 a day
Prednisone ~ 40 mg For 2 Weeks then tapper by 5mg
Asacol 400mg ~ 8 pill a day
Bella Alk/PB 16.2mg ~ 8 pills a day
Iron 325mg ~ 1 a day
Lexapro 20mg ~ 1 a day
BirthControl ~ 1 a day
 
Doctor Says If This Dosen't Work Then Remicaid Next ~~~ If That Doesn't Work Then Surgery.  
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 11/8/2007 8:23 AM (GMT -7)   
I have to avoid alot of foods, too, to feel my best. At times, I do feel deprived, but once I found a diet that works for me, I've enjoyed feeling better and, after a while, you no longer miss the things you used to eat. Sounds like you may still be having problems with either something you're eating or one of your supplements. I'm not familiar with everything on your list, but I know oral iron can cause gut issues. You may want to ask about iron infusions by I.V.

Have you ever tried an elimination diet where you spend about a week eating only the foods considered to be very safe and non-reactive? Then you gradually add foods (and supplements) back in, one at a time to try to indentify your problem foods. It's tough to do, but it can be very helpful in a situation such as yours.
Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/8/2007 11:05 AM (GMT -7)   
I don't take the things I listed until I'm already sick. The iron I have been taking for four months because my hair was all falling out, they found the ferritin count in my blood was only 2 instead of around 100. So I take it but unless I have eaten food it really hurts my tummy. I've have asked for an iron infusion several times to several local doctors and they look at me confused. No one seems to know what I'm talking about. I did the shots, but they didn't really help. The tablets must be working because I'm not losing any hair now.

As far as my diet, I have been doing low carb, high protein for about 9 years. When I had the procitis, I ate what I wanted. But ten years ago, when they said I also have spastic colon, the food aversion list started. Sometimes it is a matter of trial and error to find the culprit, but usually I have an immediate reaction to food. My family has all witnessed it. Within about 30 minutes of eating, my stomach bloats out enough that I look like I'm 9 months pregnant. Very painful. I have done the elimination diet before. Although right now, I don't know what foods would be safe and non-reactive. I am very in tune with my body and I feel I have some other undiagnosed digestive problem higher up in the colon.

Sometimes I feel sorry for myself when everyone is eating around me. But I now realize that many people have to avoid their favorite foods. Thank you so much for your post!

candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/8/2007 11:13 AM (GMT -7)   
Happydays,
I don't have a MYSPACE. This is the first time I've joined a forum. I know what you mean about mommy time. Mine are both in school now so I have my days free. Now they're mommy days! But it was really nice talking with you. You helped me through a rough night.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 11/8/2007 11:58 AM (GMT -7)   
candi75 said...
I've have asked for an iron infusion several times to several local doctors and they look at me confused. No one seems to know what I'm talking about.

Within about 30 minutes of eating, my stomach bloats out enough that I look like I'm 9 months pregnant. Very painful.
The iron I.V.s I had were administered through a hematology/oncology clinic. I'm surprised a gastro doctor wouldn't be familiar with iron infusions for treating anemia in IBD patients. I'd ask for a referral to a hematologist.
 
Severe bloating after eating suggests a possible imbalance in normal gut ecology, possibly a candida overgrowth. Are you taking any probiotics? You may want to run through this online candida quiz to see if anything strikes a chord with you.
 
 
 

Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/8/2007 12:07 PM (GMT -7)   
We don't have a hematology/oncology clinic here. But I will search one out. Probably will have to travel a couple of hours. My gastro doctor was not nice and did not like me self-treating. His way or the highway. I haven't been back to him in 3 years.

I have had a yeast problem my whole life. When I was a little girl, I had to take nystatin. YUCK!!! My mom also withheld all sugar from me as a child. My lunch box consisted only of a baked chicken breast for many years. Not fun. Left me with alot of issues. But now she doesn't control what I eat, and I'm sure I still have a yeast problem. I think she has even told me that could be my problem, but I blocked her out mentally. Why does my mother always have to be right? Helps hearing it from someone else. I have taken probiotics off and on but not right now. You may have helped me more than you know. I am researching it on the web right now. Maybe I should get out that book she gave me years ago "The yeast connection". Funny, huh?
Thank you very very much!!!!!

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 11/8/2007 1:25 PM (GMT -7)   
Hi Candi,

Welcome to the forum! I hope you find some help here and realize that you are NOT alone!! That's one of the most important parts of this disease... Realizing that there are other people out there like you to talk to and get advice from. When I was first diagnosed I was 14 and I felt like such an outcast. I didn't know anyone who had anything like I did and felt completely alone which made me depressed which I know made my colitis worse. But this forum has helped me in so many ways, even just to vent when I'm feeling down.

My list of foods to avoid is pretty much identical to yours! Spicy food, greasy food, anything with citric acid (especially orange juice and tomato sauce), nuts, chips, popcorn, salad, dairy, fruits with seeds or skins, you name it! We'd probably all be better off if we lived on apple sauce and pudding or something, haha. But after so long of avoiding foods and still feeling sick I just said screw it and started eating whatever I want. I mean, when I'm feeling sick, I avoid these things, but on "good days" I'll jump at the chance to eat a chicken caesar salad, even if I know it will tear me up later. To me, a night or two in the bathroom is worth it for a delicious bowl of ice cream sometimes.

I'm not saying everyone should do this, but I decided that I was sick of letting the disease run my life in every way. I do use discretion however... If I'm hanging out at a friends house, I'm not going to eat those slices of pizza, or if I go out to dinner and am planning on seeing a movie after, I won't order the spicy hot wings because I want to be able to sit through the whole movie! :)

I wish I could offer some advice on how to make things better, but I still haven't found a concrete way myself without having to load up on prescriptions and prednisone, so I'm in no place to say really. But there are plenty of wonderful people here who have gone through a lot and if anything will at least be sympathetic 'ears' if you need to vent :)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
 
Should also be on supplements and probiotics and other UC drugs but I'm just not good at taking pills...


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/8/2007 1:42 PM (GMT -7)   
Thank you for letting me know I'm not alone. Friends think I'm crazy when I tell them all the things I can't eat. I was beginning to believe them. Now I don't feel so alone. It really does help to be able to talk to others who can sympathize.

When I was 15, I had a bad horse accident, and almost died. Right after, the bleeding started and was diagnosed with UP. So I know what you mean about being an outcast. It's hard enough being a teenager. Now I'm 32 and things are much more complicated. I cannot afford to eat those things at all, it always leads into another long flare up. But I'm glad you can!!

NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 11/8/2007 2:29 PM (GMT -7)   
Hi Candi,
Welcome to the forum!

For me, I eat scrambled eggs (using organic eggs), organic turkey sausages and franks. I also maintain a low carb diet, which works well for me. I was wondering if you also avoid sugars as well, like cakes, sodas, fruit juices, ice cream, candy bars, etc.? I have found that products containing sugar inflict far more damage than carbs ever could, but that's just me.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
 


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/8/2007 2:50 PM (GMT -7)   
NBT,
I also do low carb, avoiding sugar. I am hypoglycemic, high risk for Type 2. But there are so many things I can't eat, I get frustrated. And I am soooo sick of eggs! If you have any good recipes or links, please share!!!
Thank you!!!

happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 11/8/2007 2:58 PM (GMT -7)   
Hi Candi,
 
            You are so welcome, and thank you. It's nice just to talk to people that understand!!!  FINALLY
 Any time you need to talk i'm here. :-)
Mild case of UC~04
Left Side Colitis~05-06
Pancolitis~07
 
6-mp 50mg ~ 1 pill a day
Mesalamine 4gm ~ 2 a day
Prednisone ~ 40 mg For 2 Weeks then tapper by 5mg
Asacol 400mg ~ 8 pill a day
Bella Alk/PB 16.2mg ~ 8 pills a day
Iron 325mg ~ 1 a day
Lexapro 20mg ~ 1 a day
BirthControl ~ 1 a day
 
Doctor Says If This Dosen't Work Then Remicaid Next ~~~ If That Doesn't Work Then Surgery.  
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 11/8/2007 4:04 PM (GMT -7)   
candi75 said...
I have had a yeast problem my whole life. When I was a little girl, I had to take nystatin. YUCK!!! My mom also withheld all sugar from me as a child. My lunch box consisted only of a baked chicken breast for many years. Not fun. Left me with alot of issues. But now she doesn't control what I eat, and I'm sure I still have a yeast problem. I think she has even told me that could be my problem, but I blocked her out mentally. Why does my mother always have to be right? Helps hearing it from someone else. I have taken probiotics off and on but not right now. You may have helped me more than you know. I am researching it on the web right now. Maybe I should get out that book she gave me years ago "The yeast connection". Funny, huh?
Thank you very very much!!!!!
I wish my Mom had known about candida overgrowth and the high sugar diet. Standard school lunches for me were PBJ sandwich, chips fruit juice and some kind of snack cake or cookies. I usually had cookies as an after school snack and more sweet stuff for dessert with dinner. I might not be where I am today if I'd been brought up with a healthier diet rather than the Standard American.
 
If you're in the mood to do some research on the topic, I'd highly recommend Candida-Related Complex:What Your Doctor Might be Missing. I found it more enlightening than Crook's book, although his is a good resource, too.
 
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 

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