In need of friends with U.C.

Hello fellow sufferers. I was diagnosed in Feb.2007. I am 30. I've noticed blood in my stool since my early teens though. I had my first flare-up in Jan.2007 and it was a very rough period. I had daily accidents. I was so feverish and lethargic. After my colonoscopy in March, I was on Asacol and everything kind of went back to normal. My urgency went down, I realized how precious it is to be able to control my b.m. I'm on Lialda now, 4 pills a day, because its easier than 12 Asacol pills a day. I've lost a lot of hair since my flare-up which I attribute to the Asacol and Lialda. Two weeks ago I began another flare-up. Only one accident so far so its not as bad as the first time, but the lethargy and multiple b.m. are back. What is weird with my flare-ups is I have an "urgency-attack" and after I rush to a bathroom I end up with a very small b.m. I know I have a lot inside me that I need to excrete, but I just can't. Its like there is blockage, or like my colon has constricted. My doctor put me on 40mg. of Prednison a week ago and after a month of tappering down, he wants to do another colonoscopy. It will actually be his first because I had to switch doctors for insurance reasons. I really want to go to the next level of treatment, which I believe is Remicade. Even between my flare-ups, I was never quite right. I was always sluggish and having diarhea. I wanted to go to this riverwalk over the weekend, but I am glued to the toilet right now. I'm tired of this and its only been a year. I already have social issues, I'm highly isolative, and I have depression, anxiety, asthma, allergies, hair loss, acne, lose shin from a 100 lb. weight loss, a bad scar from a poorly done abdominoplasty, a mis-centered belly button, carple tunnels or arthritis or something like that. I'm just such a mess and now this U.C. has really made things more complicated. I'm so alone as it is and this won't help. I think I'm at the angry stage in my grief proceess, don't you? :) I know this is a lot but Ive only had doctors to talk to until I found this site. I need friends with U.C. Well I need friends period. Lol. I'm not just a complainer, I do things to be proactive. I work out a lot for my mood, I volunteer, I  read a lot about U.C., I am on Match.com to try and meet a girl, I am able to keep a lot of my conditions under control with meds. I just hate the loss of energy and being chained to a toilet with U.C., you know, its horrible. Ok, now my carple tunnels is acting up, lol. If you want to exchange numbers, or just email me, I could use some peer support. Thank you all.

Hi there and Wecome to Healingwell! This is a great community full of support that you have stumbled across. Sounds like you are having a rough time right now. Hopefully you can work with your doctor to get a better treatment plan underway so that you can feel better.
I am glad that you found us!
By the way, I found my boyfriend on Match.com.....so it does work, and there are people out there for everyone. Even those of us that are broken. :)

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Katina

Sorry to hear things aren't going well for you at the moment. Healingwell is a great place to get support and chat to people who understand what you are going through. Have you tried any rectal meds like the steroid foam or Rowasa? Sometimes they can provide good relief from symptons - just a suggestion.

Hang in there buddy - once you get a treatment plan with your Dr and get off the prednisone you'll hopefully start feeling a lot better. I used to get really down when I was on prednisone so I can relate. Things will get better

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UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 3 x 2 tablets daily for maintenance, Salofalk enemas for flares
Oat bran 60grams daily, Metamuscil and multivitamins

Are you on any rectal meds at the moment? If not, then I recommend you start them as soon as possible. This will help with both the urgency and constipation. Once you get this flare under control, have you looked into going to support groups in your area? Are you in the states?

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hi

 

just thought id say a hello and ur not alone in feeling the way u do

its a real crap condition isnt it

 

 

Hi there,

Its almost too good to be true!!!  I happen to be off work today due to the very same annoying problems you are having.  I am a 31 yr old female who has been diagnosed for about a year now.  I am EXTREMELY frustrated with UC.  I just hung up with my dr office and they are putting me back on the canasa suppositories again!!!  No it is not pleasant but I will do what I have to.  I feel for you completely!!  I hate my life today and have been depressed and crying for the better part of the year of diagnosis.  I am on anxiety meds but I dont want to rely on them to get me through.  I just wish I were normal is all.  I definitely get you when u say u r glued to the toilet.  I had plans for the weekend but yet again could not leave my apt without worry.  The whole urgency thing and then once u get to the bathroom u dont go much is totally the same as me.  Its very frustrating.  I was up so much last night that I could not even get myself moving to work today!  Do you have trouble going to work some days? 

Its funny you mention Match.com.  I tried that sight myself but didnt have much luck.  I feel like any guy I meet will run away once they find out I have UC.  Much less understand it! 

Well I certainly hope your day has gotten better and would like to chat with you.  It seems we have a lot in common.  If you would like to chat I have yahoo IM and MSN IM or of course email. 

Hope to hear from you soon! 

Amy

not much of a post person just a reader but undestand the degree of this illness emotionally. email is -- in my profile -- if u ever need ot vent 

Wow! Lots of new members in this post! Welcome to Healingwell!

This disease can be highly disruptive to social lives. I found great support and friends when I found Healingwell! We're glad you found us!

queenofthethrone - LOVE the screen name!!! (Sorry I had to remove your email address - just want to prevent the spammers from finding it!)

30yoguy - have you ever used the rectal meds? Canasa? Rowasa? Hydrocort? (I know, I know - yuck! BUT they WORK!) Rowasa and Imuran got me off pred the last time - thank goodness!

Usually when 5ASAs don't work anymore the next step is immunosuppresants - Imuran or 6MP. After that - Remicade or Humira.

Have you considered probiotics?

Hope to see you around!

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Pan-colitis and GERD diagnosed May 2003

 

Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed

Aciphex, Effexor XR, BCP, Rhinocort nasal spray

Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12

 

Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.

 

Co-Mod for the UC forum

Keep HealingWell running smoothly:  www.healingwell.com/donate

WOW!!! Thank you all for your support. I am so lucky to have found this site. I have found more info in my two visits that the 2 books Ive read. Its great to freely share our "gross" symptoms. Ive come to accept my urgency and frequent b.m. but that doesnt mean I share that stuff with others. This is the first time I have not felt alone. Thank you all for that :)

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 I was diagnosed with U.C. in early 2007. I am 30, single and no kids.

Don't go to the next level of meds., TRY ROWASA. We can help you use it properly. Quincy is a pro at it!!

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30y.o.guyw/U.C.,

Many of us have found various ways to control uc, for me diet has given me my life back. It's not a solution by any means, but I have no urgency, more energy, no joint pain and my colon has showed signs of healing.

Try avoiding sugars like sodas, fruit juices, cakes, candies, etc. also try avoiding dairy products especially milk. Sometimes I take calcium supplements maybe once a week to replace my calcium levels. Following this isn't always easy, but it's better than poohing 15 to 20 times a day and feeling like pooh...lol

This is what works for me, if it works for you then my preaching won't be in vain. I'm no longer on any meds and I've been much improved for months since following this diet...I'm still a little tired, but NOWHERE near as fatigued as I used to be. I used to be wiped out all day, everyday and angry most of the time because I felt like my life was wasting away.

Now, I have energy to get out and about and I don't have to worry about where the nearest toilet is...I have 4 to 5 bm's a day and sometimes less. If you try this diet, stick to it because the slightest deviation will put you back to square one, even if it's a small piece of chocolate.

Why not give it a try...you've got nothing to lose except pooh!

NBT

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Diagnosed with Ulcerative Colitis January 2007

Thanks for the tips everyone. I am really going to try and change my diet. I already eat a vegan diet so avoiding dairy won't be a problem, but lately Ive become a sugar addict so I am going to cut out sugar. I will keep you all posted on the effects of my little experiment. I am going in for a colonoscopy with my new Dr. on the 8th, and then he and I will discuss meds. Maybe I will tell him I want to stay on Lialda and try altering my diet first. Again, thank you guys for your support :)

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 I was diagnosed with U.C. in early 2007. I am 30, single and no kids.