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maddi1
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 11/10/2007 10:15 AM (GMT -7)   
I have been dx with proctitis for a month now and after chating with folks on the board I feel hopelessly depressed that my life will be filled with nothing but switching from medication to medication, living in bathrooms not being able to take care of my 2 yr. old son or husband.  It seems that no one on this board is having to much luck with this disease.  My GI acts like this is no big deal at this stage, but it is!  All I can think about is when this disease is going to spread further and take more of my life away from me. mad
oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 11/10/2007 10:28 AM (GMT -7)   
You have to realize that many who are here are worst case scenarios. Many of those who are in remission don't post becuase they are too busy living their lives. I've had this disease 10 yrs and have spent that majority of that in remission. There are ups and downs but even with those I am a generally happy person. I love my life, my husband, my home...and I just happen to have UC. It took a long time (and a bit of therapy) to get back my perspective. It seems now that this is your life but UC is not your life, it may be a part of it but it's not everything.

Your GI is wrong it is a big deal. It is a chronic illness. That doesn't mean that you will always be sick.

Try to remember that this forum is not a representative of life with UC. There are many people out there with this disease who are in remission and don't have the problems of many of us here. The internet can be dangerous in that way. I would suggest finding someone to talk to about living with a chronic illness. Check ut CCFA.org they have support groups all over the country, or look into therapy, or just find a very understanding friend...it helps.

Good luck!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07
Prontonix once daily for acid reflux, zofran twice daily for nausea


maddi1
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 11/10/2007 10:54 AM (GMT -7)   
kelly,
Thank you for understanding and for those kind words. I just feel like I am in this black hole and I am always going to be sick and that I am never going to be okay and that life is not worth living. Thanks for telling me it is! I went onto the ccfa.org and evrything as far as support groups and meeting are 2-3 hours from where I live and I have a son and husband and do not have any friends and I do not talk to my husband about this much nor does he ask. So it is unrealistic for me to drive all that way to try to get to meetings and then I work also so I could not if I wanted to. I do not know how to figure out if anyone in my community has UC or would want to start groups if they did. Any suggestions?
oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/10/2007 11:38 AM (GMT -7)   
Maddi, I totally agree with Kelly. What you see on here is many people that are actively suffering from a flare. What you don't see is the untold hundreds/thousands that are out there enjoying life and not letting this disease get the best of them. It took me a long time too to come to terms of my disease. I view myself as a mother, wife, and gma caretaker who has a disease. I don't let this disease define who I am. I still get out there and do things such and hanging out with friends, go shopping, movies, dinners, parties etc. Even if I'm feeling like crap, I try to get out of the house. It makes me feel a ton better emotionally just to get out. It's a challenge when you're flaring that's for sure!

I have a suggestion for you about meeting others in your area that may have an IBD. Go to your local grocery store, hardware store or newspaper and post an ad. Something to the effect that if you have an IBD and wish to create a local support group to have them call you. You might be surprised to learn that there are more in your area then you thought. Last September, I went to the local CCFA chapter Guts and Glory walk. They handed out t-shirts to the participants. I was driving my daughter to school one day after the walk and I seen someone wearing one of those t-shirts right in my neighborhood. My community is not a large one so I was surprised to see someone that may of had an IBD.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


sis37
Regular Member


Date Joined Feb 2007
Total Posts : 56
   Posted 11/10/2007 1:18 PM (GMT -7)   
Maddi,just some words of encouragement.  I was diagnosed with proctitis 7yrs. ago and still proctitis today. I take Asacol daily and Rowasa enemas when I am flaring. By flaring I mean some blood and a couple extra bm's a day. Hope this helps.

Dxd with UC in 2001, was put on Cipro,Metronidizal and Asacol.
had 2nd flare 2006 put on Rowasa enemas, Asacol.
Current meds Asacol 2, 3x a day.as maintenance therapy.


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 11/10/2007 1:31 PM (GMT -7)   
Maddi1
I have had UC since I was fifteen years old. I am now 62.

I have had some bad spells, and times when I was frustrated and down. But I still was able to live a full life. Went to college, got my degree and taught school for nearly forty years. And I had a good attendance record. I would actually get stubborn and say NO, to my UC. I had these little talks with myself and I determined I was not going to let the disease win.

Hang in there. My worse times were from 15 to about 30 (worst flares but I also did have some remission time). After 30 my flares were less and less frequent and lasted shorter. It can get better.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 11/10/2007 2:41 PM (GMT -7)   
Maddi, you're not in a black hole, you're in a tunnel, and there's a light at the end of it!!!
It will take a while to find the right meds for you, and I know it's terrible to feel like your life is on hold, but when you do get into remission, you'll appreciate it that much more.
I experimented with different meds and diet for a year until I started Remicade and I feel amazing! I still get fatigued occasionally etc...but I am running my own landscape company again and doing all the work myself.
Be patient, pay attention to your body and get whatever support you can. You are not doomed.
James
Current Meds www.myspace.com/gardenerjames

Asacol 4 tabs 2x daily
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
Omega-3 once daily
Tenth Remicade infusion Early December


Trixy's Got Butt Trouble
Regular Member


Date Joined Jun 2007
Total Posts : 356
   Posted 11/11/2007 11:22 AM (GMT -7)   
Maddi -
I was devastated when I was diagnosed with Proctitis almost 8 years ago. Unfortunately for me, it has spread and I now have pancolitis. I thought my life was over. I couldn't have been more wrong, as my life was just beginning. I've had more good days than bad days so if I look at it that way, my life was far from over.

I have a 3 year old and also wondered, "How in the he!! will I be able to look after her when I'm flaring." You just do. You will begin to know your body and what each feeling means. You'll begin to realize that when this feeling comes over you, you have 10 minutes to find a bathroom or 1 minute. You'll scope out bathrooms along your routes and in every store just in case the "I gotta go now" feelingg strikes. Yes, it is annoying, but not impossible. And I agree that what you are reading her are people who are actively flaring and have a more advanced disease. Mine is actually very mild so my life hasn't changed too too much. I'm still very active and try to life as normal of a life as I can. You can do.

Ask your DH to help do certain things when you are flaring to help take away some of the stress. Adding to your stress doesn't help so trying to push things off on your DH or anyone who will help will help. I hope everyone has a DH like mine and is so supportive with me and this disease. Its funny. My 3 year old even helps me out when I'm flaring. I have always explained to her that I have a sick bum. All I have to say is, "Mommy's bum is hurting" and she turns into the mom and wants to take care of me. She knows that when it is bad that I can't play with her like she wants and she goes and bugs Daddy. It is really too cute.

Good luck and if you ever need to talk, this is the best place to come. I always do.
Best Wishes,
Trixy (39)
dx Pancolitis, mild, w/more activity on left side & IBS
12 Asacol a day;
1 Rowasa at night during flare/1 a week during remission;
Nexium; Probiotic; Multi-Vitamin; Flax Seed Oil
UC manifesting to other organs: joints, eyes (Iritis) & skin (Erythema Nodusom)
Controlling w/MEDS & DIET (eliminating animal protein, white flour, sugar, dairy, eggs, & nightshade veggies)
Current Status:  Ending 5 month remission w/mini-flare :-(


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 11/11/2007 4:01 PM (GMT -7)   
Hi, Maddi! A good site to find more positive info about dealing with UC (proctitis, etc.) is Salix Pharmaceuticals newsletter (archive). You'll see articles written by leading IBD gastros in the U.S. advising on diet, meds, exercise, travel, etc. Just GOOGLE it & you'll find reasons to shed the blues. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 11/11/2007 8:36 PM (GMT -7)   
Maddi - where are you located? There might be ple on the forum that are near you!

Wow all! What great words of wisdom! We all need a reminder at times that life is not all about UC. That we are other things beside UCers!

I don't have children, but I have dogs. When I was at my sickest, they are what got me out of bed. They NEEDED me to move and not mope around in my misery. Plus, that unconditional love never hurts!

Hang in there! And vent away :) We're great a listening!
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
Forvia and a Probiotic
 
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


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 11/11/2007 9:00 PM (GMT -7)   

Hi Maddi,

  I went through exactly the same thing you are going through now. Even still to this day, I have my moments of "gosh, I'm going to always have this disease", but when I have those moments now, they're not as bad as in the beginning. Like many here said, you are going to figure out your medication routine, what amounts help, what foods to eat and not eat, and things can be great! I have been diagnosed for almost 3 years now and have a VERY active life. I drag race, ride my horses, I have a crotch rocket of a motorcycle that I am planning on HOPEFULLY racing next year. Right now, I'm in Montana having some quality alone time with my horse and dog... Getting away from the stresses of a troubled marriage and hectic work schedule. Which leads to my next point... You have to take care of YOU.. I was always putting myself last and that will lead to stresses that you can avoid, which will help you avoid flares.. Another important thing I can say is that you stay on your medications. I tried going off mine a few times when I thought I was better, but that always for me ended up with me back in a flare. So now I am on Rowasa enema's once a day, every day and that's it, for maintenence. Although, sometimes I will take a night or two off, just because I get sick of sticking things up my poopie-hole... LOL...

   Try not to worry too much, (I know, easier said than done)... this is an AWESOME Place to come for support, God knows I have gotten my fair share of that here over the last few years, and what a blessing it has been, as I am sure it will be for you too :)


SusieBuddy  
Diagnosed with U/C January 31st, 2004, IBS on July 21st, 2006, Dr says possible Crohn's...We'll see..
 
Meds: Rowasa enema's - OK, finally got brave enough to start every other night.
         Canasa 1000mg. AM Only, - Bentyl 10mg. As needed, - Culturelle 1x a day 
         Nexium - 40mg, 1x per day, - Xanax .5mg as needed which is haldly ever, 
         Effexor 37.5mg. 
 
         www.myspace.com/77016897         


NIcepeter
Regular Member


Date Joined Sep 2007
Total Posts : 72
   Posted 11/12/2007 12:10 AM (GMT -7)   
I am doing very aggressive study on proctitis now. I am trying Chinese Medicine now. I will keep you updated. Please keep us updated too. Together, we will win. Peter
36 yrs male. From Arizona
 
Took a lot of antibiotics for my sinus infection caused by allergy, Augmentin and triple antibiotics regimen. Now qualilfy to join UC team.
 
Dx in 2007. Proctitis only( party of Ulcerative Colitis). Mild Hemorrhoid. Fish oil 2 capules twice a day, helps. Alo Vera sometimes helps. Propolis helped quit bit, but had to stop due to allergy issue.
 
 


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 11/12/2007 12:34 AM (GMT -7)   
its not the end of the world. your still alive and going. i have been in a year long flare that has been so painful im now hooked on oxycontins. weaning myself off of those now. and yes, u will learn to know where every toilet is in the entire city and surrounding areas.
but you learn to deal with it.
good advice above from everyone.
we just crap more than the average human.

and if you can find portable handle bars for the toilet, please let me know!
31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only.
**3 weeks out of hospital/no colitis symptoms... normal bm's only 1x a day + no blood
50mg prednisone 1x  with lunch or breakfast
50mg imuran 1x  8pm stopped it to try and have a baby
2x 500mg mesalazine 2x day + night
VSL#3 didnt work
Aloe Elite didnt work
Budesonide 9mg day didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 


happyness
New Member


Date Joined Nov 2007
Total Posts : 1
   Posted 11/12/2007 2:49 AM (GMT -7)   
Maddi, you are not alone. When I first got ill with UC 4 and a half years ago I was a single parent with 2 children aged 2 and 6 months. Since then I have been up and down with several flare ups. Luckily I have been in constant remission now for 18 months, but it took me a long time and alot of experimenting with medication to finally get here. The worst thing for me was how much of a failure I felt as a mum. Sometimes I couldn't even get out of bed, let alone look after them. Toilet times in my house became a public affair - the amount of time spent in the loo meant that I could never shut the door. Myself and the children would spend hours together in the bathroom, them playing with their toys either on the floor or in the bath with me sitting on the loo! They are 7 and 5 now, and have grown up so far with the knowledge that mummy has tummy problems, and sometimes I am ill. But I do not feel guilty about this anymore. Both me, my partner (of 3 years) and my children have learnt to live with my condition, and we all work together as a team. I too live too far away from any support groups. At first I couldn't talk to my partner about how I was feeling, but learnt to open up to him and realised that I didn't have to be strong all of the time. Sometimes, Maddi, you may feel so bad that you just want to curl up in the corner and die. But your son and partner will keep you going. It doesn't matter if somedays you are not supermum or superwife. Just do whatever you can, and enjoy life and the times that you have with your family because little else matters. And I promise you, things will get better. I am hoping to train to be a high school teacher next year. This would never have even crossed my mind two years ago. Good luck x

expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 11/12/2007 6:07 AM (GMT -7)   
Maddi - I echo what everyone else has said on here... hang in there! When I was first diagnosed, I was convinced that I was going to end up on disability and never be able to do the things I dreamed of doing. I couldn't have been more wrong! I have a very fulfilling career, a wonderful husband, and am pregnant with our first child. We have traveled all over Europe and the United States while I have had this disease. I have my days where I don't feel well and I do take my medication religiously, but UC has not controlled my life. I generally do what I want, when I want... the disease has not held me back. You have to remember that everyone's case is different... and you have to go on living your life. I have had several friends be diagnosed with cancer recently and some have died... that has been a good reminder to me that UC isn't all that bad in the whole scheme of things. It could always be worse.
Current Medications:
- Asacol (4 pills, 2x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


sarah123
New Member


Date Joined Jan 2006
Total Posts : 16
   Posted 11/12/2007 8:08 AM (GMT -7)   
hi
wanted to say that i was diagnosed w/ proctitis when i was 19-- that initail flare was under control within 8 months and i didn't get another one until about 9 years later. certainly, as some have posted, there are 'bad times' -- and i've had them recently myself--but with a supportive family and a good sense of humour (my husband likely never thought he would be talking about poop so much with his wife), its manageable. i now have a 10 mos old son and having a great time! just take the opportunity to start (if you're not already) eating well and taking note of what foods really don't agree w/ you and stay away from them. i have a bad habit of going back to the 'bad' stuff (coffee, wine, spicy stuff) when i'm in remission and usually pay the price....

good luck!
Sarah, 30F
diagnosed w/ UC 1996
currently on Imuran 150mg
tapering off prednisone--3 weeks to go!
Remicade- 2 treatments so far.


maddi1
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 11/12/2007 8:39 AM (GMT -7)   
sis 37,
That is encouraging to hear that you still have proctitis. It gives me hope. Why did your doctor put you on cipro? Most folks on the board are not put on antibiotics. just curious. Did you change your diet at all and cut out sugar, wheat and other stuff? Do you exercise regularly?
oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 11/12/2007 10:31 AM (GMT -7)   
maddi1,

I believe ulcerative colitis can be controlled or it's symptoms reduced through diet. This is how I am able to get on with my life and do things, which I couldn't do before the diet. It's not a solution and it may not work for everyone, but it works for me...I'm not on any meds and my bm's are about 4 or 5 a day.

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
 

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