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ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 7/22/2008 7:56 AM (GMT -6)   
Well, I'm new to all of this...I'm not exactly diagnosed yet, but I know I have UC. My identical twin sister got diagnosed 5 years ago when she was 16, and now about a month ago I've started having blood and mucus every time i go to the bathroom...I'm totally pissed off, I didn't think it would happen to me, but the doctor said i had a high percentage of getting UC and i probably have it. I go in about 2 weeks to get a scope done, which i'm terrified about! Even though my twin has UC, you think I would feel like i have a support system, but I really feel alone. She's been in remission for a couple years now, has been on meds forever, and is doing much better. I think she has forgotten about how much pain it caused her. She's telling me I'm just freeking out and it's all in my head. My symptoms have recently gotten worse. I'm always in pain, I'm nauseous all the time, and i am constantly bloated. It seems like no one understands how painful this is. I'm on the toliet 8+ times a day and can't remember a time when it was ever normal. I'm constantly being told that I'm overreacting and that I just need to relax. I don't think my sister ever got sick to her stomach with UC, so I'm sure she will never understand the constant pain I'm in. I feel as if I cant eat anything because it just goes right through me. I've been afraid to go out recently for fear of that pain that can strike at any moment. I haven't really told any of my friends and I honestly don't think they will understand. In high school when my sister was diagnosed, everyone gave her a hard time. She was also put on prednisone and gained about 40 pounds of water weight, something I really hope I dont have to do, as vain as that sounds. I've always been an active person, constantly working out, I'm a college cheerleader, ran cross country and track and cheered in high school, and I now coach a varsity high school cheerleading team. Now when I go to the gym, I get terrible cramps and pain. I don't really know if it's helping me or hurting me. Hopefully this scope goes well and I can some help immediately. I just want to live a normal life and have the people who are close to me understand how embarrassing, painful, and scary this is for me. If anyone can give me some insight on all this and some advice for this constant pain and bloating, let me know! Also, I'm only 21 and I feel like I'm the only young person out there who has this, even though I've heard statistically UC effects most people before the age of 25...so to any young people out there going through this let me know, i feel totally alone and out of place......Thanks!!!!!!!!!!!!!!!!!!!!!!!!!

Post Edited (ImAud) : 7/22/2008 8:00:44 AM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/22/2008 8:12 AM (GMT -6)   
UC affects everyone differently. For example, I never had pain with UC but I did have vomiting and fevers. Knowledge is power when it comes to this disease. The more you know the better you can manage your symptoms. UC is chronic and it is best kept in remission by taking maintenance medication. Also taking care of yourself, eathing healthy, and getting plenty of rest is key too. Since you don't see your twin as a support for this yet, you are doing the right thing by reaching out to others. UC is a disease of denial and again, speaking for myself, I denied how horrid it was and rationialized my flares. Be sure to be honest with your GI about your symptoms as you have them. He or she can best help you if you acknowledge all your symptoms, emotions, etc.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 7/22/2008 11:11 AM (GMT -6)   
ImAud,

You are definitely not alone, although I certainly understand that feeling. I am 23 and was diagnosed with UC when I was 15. It was the most miserable, embarassing, traumatizing thing for me and I think it had a large hand in ruining my high school years. It's really difficult when the people you're close to don't or won't understand the disease... My boyfriend is great about it most of the time but he hates going to appointments and procedures and whenever I try to talk about my UC he changes the subject, which is very frustrating. My parents will listen to me for hours but still think that it's because I eat McDonald's from time to time and if I had a perfect diet I wouldn't have UC. Trust me, you'll hear a million different things, people will try to say it's your fault (which it is NOT!!!), people will try to make it out to be nothing and that it's in your head (as you've found out) and people will just be downright rude. The most important thing is to really research and understand it for yourself and just know that people can be very ignorant, you just need to ignore them.

This is a great website with great people who have been through it all, and you'll almost always find someone who has or is experiencing the same things as you, so it's nice to come here and vent or just read others' stories and advice. I don't know what I'd do without this place.

Female, 23, Ulcerative colitis (pancolitis) diagnosed at age 15; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use. 

Current Meds:
Lexapro 10mg
Trying out Lialda, 2 pills/day

 
 


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 7/22/2008 11:29 AM (GMT -6)   
Well i know how you feel! and it's funny because my boyfriend is the same way, he is very caring about the whole thing but when i bring it up and get upset about it he tries to change the subject and has even told me that it's not a big deal...which it totally is to me and i'm sure everyone else out there who has this problem! thank you for your insight and letting me know that i'm not the crazy one (which i've been thinking i was!!) and i'm very happy i found this website to find people like you who totally understand :)

what scares me the most right now is that i'm not officially diagnosed and i'm not on any meds yet and wont be until the middle of august (i hope!) i've been bleeding alot more and it's getting worse, i'm really hoping it doesn't get so bad that i have to go to the ER like my twin sister had to do when she was 17 (she had to get 2 bags of blood put back into her) :(...i'm also going on vacation with my boyfriend next week to see his family...we eat out and his mom knows i love to eat!!! unfortunately i know i wont be able to eat alot and i will probably be in pain and be miserable the whole week :( so much for a vacation!!!! what's even more funnier is that i visited them about 4 weeks ago, and told my boyfriend,s brother about my sister having UC...he just went off and said how gross and made very rude comments, which pissed me off and i yelled at him for it....a week later i started having blood and mucus when i went to the bathroom...wow how ironic!....but i am not going to let this get in the way of my life and i will enjoy my vacation!!! even if im on the toilet the whole time :)

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/22/2008 12:22 PM (GMT -6)   
ImAud,

I was dx'd when I was 24 and was losing toilet bowls full of blood, and they said I had to wait 3 mos to see the GI, I was like I doubt I will be alive by then and they got me in the next day after explaining all the blood loss. They put me on sulfasalazine and rowasa enema's and within a couple of weeks I was doing much, much better! I would call your Doc and demand to get in there and get on some meds immediately, you have to be your own advocate.

After that for 7 years I was fine as long as I took my meds faithfully, when I did not, I would flare up again. I had a lot of denial. I went into a horrible flare this past Oct which was totally different from my first flare up, cramping, going 25+ times a day, not being able to hold a bm in. I was a zombie and could barely leave my house to go to work. I am in pred induced remission right now, and hope I can taper it.

During my horrible flare my sister at the begining was not really there for me, she was 'too busy'. I basically had a talk w/her and explained that I know you are busy and I know you don't know what it's like (now she has bowel problems) and said to her that a 5 minute phone call once a week to ask how I am doing would fit into her schedule and make me feel better. I had to tell her what I needed her to do and sometimes I need to tell my husband the same thing. They cannot give us the empathy we need, unless someone has gone through the exact same thing they dont know what you are going through and also, I played down my first flare, I don't really remember it too much, not like I remember the one I had in Oct. btw, I have always been there for my sister and it really did hurt me that in the begining she was not there for me, but we worked it all out and now she is very supportive.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 30mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 7/22/2008 1:19 PM (GMT -6)   
Thanks for telling me your story! At first I wasn't scheduled to go into the GI doctor until late october..and i thought the same thing..im going to die if dont get in soon. Finally i complained enough to my primary doctor and the next day i got a call saying i was going to see the GI dr. in 3 days, not 3 months. I saw him about 2 weeks ago and he made sure to schedule me a scope and get me on meds before i go back to school. So august 6th i'll get scoped and hopefully get on meds after that...can they put you on meds without a scope though???? i would really like to know because I'm afraid it's going to continue to get worse, like it has, and i'lll end up in the ER before next week :(

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/22/2008 2:11 PM (GMT -6)   
Hi ImAud!
I can totally relate to your frustration. Anyone who doesn't have the disease has a really hard time understanding it or even tolerating talking about it. My husband is very supportive about it but will get totally frustrated at times, because there are no clear answers and there's nothing he can do to help. He's tried to research it online and gets as annoyed as I do about all the conflicting information out there. So try to understand how frustrated your boyfriend might be about not being able to help you. This has been very difficult for my family to understand, but they tell me how upset and concerned they are for me. I can't even tell them what it is I need from them for support, so I know they struggle to be a comfort to me. Hang in there and remember that we're all here for you and know what you're going through. Keep in touch!

Katie
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily (as needed), Tylenol, and Acidophilus 2X daily.
Diet/Exercise:  No sugar (including fructose, sorbitol, mannitol, and lactose) or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/22/2008 2:48 PM (GMT -6)   
not knowing for sure is the worst part of anything in my opinion. I know it seems they don't care when they tell you "don't stress over this" or "don't worry about it" but in their own helpless and misunderstanding way they are trying to help, they just don't understand that doesn't help at all. Most of it is that they just don't know how to deal with the situation. "Bowels" and everything about them have always been treated as a private thing in our society so it's been my experience that you are expected to suffer in silence when you have a problem with such an unmentionable area.

Welcome to the group that literally shoots that practice full of holes!! If you need to talk about any of it . . . lay it all out on the table here, odds are that someone has seen it/done it/ been through it. You aren't alone here.

I love this group and have found new vigor in bettering (I know not a real word) my own treatment through this group.

To answer your question I was symptomatic since I was 23 mis-diagnosed until I was 28 and had 2 surgeries in that time that were "going to fix the problem" before they even began to think UC was an option. Kudos to you for getting them to check that first, you are already way ahead of the game! I'm now 36, have a great job, have been married almost 7 years, together 9 and have a beautiful 18 month old son. If you do have UC it doesn't mean life stops (o: We're all too stubborn to give up, it just helps us appreciate the good things even more!
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


muddkingsmom
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/22/2008 3:22 PM (GMT -6)   
Just signed on, so very new to the blog, but not to UC. As a mom of an 18yr old guy, I was wondering if any of you have had the surgery or if it is even an option for you. We've been struggling with hospital stays mainly for dehydration and/or allergic reactions to meds. Now the surgery is scheduled for mid August and I am second guessing everything. My son has been on Remicade for a year and has really followed a strict diet. Right now he just wants a life. He is a volunteer fire fighter and even going to EMT summer classes. I am confident with our out of town dr that we travel to, but again as a mom am wondering if we are doing enough. Your thoughts are appreciated.

UC 5/2007
Remicade every 6 weeks
Llialda 2x
prednisone coming down from 30mg
3 colonosc in the past year w/ biopsy--no change

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/22/2008 5:05 PM (GMT -6)   
Reading this entire topic makes me feel so fortunate. I would like to say as you can see below that I am 68 and newly diagnosed. Gastro doc thinks I probably have had colitis for many years - diagnosed as IBS twice years ago. I only had short flares of diarrhea over the years - living on Imodium and pepto bismall sometimes.
Then came the bleeding. I had to have another colonoscopy to make sure but yes he did give me medication - antibiotics and probiotics until I go the results. Now in the process of finding out what works for me.
I feel very fortunate to not have this UC when I was so young as most of you.
Hang in there - get a good gastro doctor and MAKE him listen so you get the help you need.
For me - I will try anything before steroids or surgery.
As for the testing - colonoscopy is very easy and no problem - prepping is worse part.
Be sure your doctor does the other testing for anemia, cancer, polyps, infection, stool for c-diff, etc. LEAVE NO STONE UNTURNED. At my age I have learned at least that and never be afraid to ask for a second opinion.
ElaineNY
68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Canasa 1000mg. once a day - added Colazal 3X2 for a month
Probiotic Align (after trying primal defense)
Prilosec for GERD
Inderol for hypertension
Xanax and Lipitor
 
 
 
 
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/22/2008 5:54 PM (GMT -6)   
ImAud, How about starting some pro biotics. You might see some relief from them before you have your scope done. You have definitely found a great forum, everyone here is understanding of what you are going through. What a great support system we have here. Good Luck!!
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 7/22/2008 7:48 PM (GMT -6)   
Thanks to all of you who have shared their stories and reminded me that i'm not alone and that there is hope!!! im so glad i found this site full of caring and understanding people :) thanks again!!!!!!

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 7/22/2008 8:05 PM (GMT -6)   

Hi ImAud, welcome to HealingWell. I know you will find lots of support here. It is a shame that even your sister can't relate right now. It just goes to show that when the meds work, they really work! My daughter was diagnosed at 15. Luckily she has some friends who truly care, ask lots of questions, and are always checking in with her. Then she has alot of other friends who care, ask how she is, but don't quite "get it". My daughter has never really hidden this disease. She is pretty upfront with anybody who asks about it.

muddkingsmom--welcome to you too! I know you asked about surgery. My daughter just had surgery (almost 3 weeks ago). I don't want to hijack this thread but you can start a new one and I (along with many others) will let you know how we have approached UC.

 


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/22/2008 8:56 PM (GMT -6)   
Hi and welcome to Healingwell :) I'm glad you found us but sorry of the circumstances. I was diagnosed at 22 and I remember the early years oh so well! You're right, it feels as if you are the only person in the world that has this horrible condition. Actually I felt totally isolated until I found HW 4 years ago and that was 12 years AFTER being diagnosed. So by coming online and seeking support is one step closer to understanding and easing your fear. If you haven't found it yet, go to www.ccfa.org for more info on Uc or look at our resource section at the top of the forum.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections~bulging and herniated discs C5,C6&C7~2nd epidural injection 8/14
To help Healingwell - click here: DONATE
 
 
 
 

 
 


tiredofit
New Member


Date Joined Aug 2007
Total Posts : 7
   Posted 7/23/2008 6:12 AM (GMT -6)   
Hello ImAud!
I have had O.C. fore many years. I believe that the worse time of the disease is in the first couple of years, because you don't really know what to suspect, and I'm not saying it will be easy to adjust, but you will adapt different ways of handling the situation. I think the best thing is to be open with your family and friend. Don't be afraid to tell them about your good and bad day. I even make jokes about it some times which helps break up the seriousness of it. If you make it all negative you will always be looked at as being a sick person to people that don't understand the disease. Good Luck and remember your not along. ;) Paul
My colitis is doing fairly well right know the Doc. got me on a drug called
LIADA (1.2 gm twice a day)
also still taking IMURAN (100 mi. a day)

malka
Regular Member


Date Joined Apr 2006
Total Posts : 171
   Posted 7/23/2008 6:33 AM (GMT -6)   
Welcome to HealingWell, ImAud!

I'm 62 years old and had my first flare when I was 20, but wasn't diagnosed until I was 29. Please be assured that while the disease varies, it is quite possible to lead a normal life with long periods of remission. Except for one hospitalization over ten years ago, most people I know are not aware that I have the disease. The key is to finding out what medications help and what foods to avoid. I know I have been lucky, but while many people out there are much sicker, there are also a lot of people like me. So, please - don't assume the worst and hold on. It is quite possible that, if you have UC, medication will make a big difference.

My best to you.

M
Diagnosed UC 1975. 
Azulfidine Entabs 500 mg. 4 twice a day
Azathioprine 100 mg per day
Colocort - as needed
Folic acid, vitamins C and D, multivitamin, metamucil, fish oil, turmeric 
 
Hospitalized 1997 - intravenous cyclosporine.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/23/2008 7:44 AM (GMT -6)   
my first GI put me on meds after doing a flex sigmoidoscopy in his office, less invasive than a colonoscopy but not as thorough. I think he did that b/c I was in between insurance at the time (just started a new job) and needed meds immediately. Though I don't see why they could not give you meds now based on your symptoms, I would call and ask, it would probably help them do the scope better anyway. Don't be afraid to push your Doc's!!!
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 30mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Hans C
Regular Member


Date Joined Dec 2006
Total Posts : 89
   Posted 7/23/2008 8:26 AM (GMT -6)   
Hi Imaud,

Sorry to hear your story. Try to remember things can be fine and normal when your medicines are working for you. I was diagnosed at about the age of 23. The friend I was living with at that time was diagnosed with MS at the same time. Many people have many illnesses - it definitely sucks to have UC but I'm glad I have UC and not MS.

Hope you get your treatment soon!
age 26  ------------- diagnosed 2004 (probable left sided)

Multi-vitamin                                       Lactobacillus acidophillus sachets
Aloe vera - Omega3 fish oil                    Asacol (8x400mg)                     
Iron, folic acid and b12 supplement__________________________________________________ 

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