Does UC rule your life?

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barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 466
   Posted 1/23/2008 9:37 AM (GMT -7)   
For the past 3 years that I have been flaring, UC dictates virtually everything I do. 
 
From the time I wake up till I go to bed in the evening.  When I am out of the house, I worry about the nearest toilet.  When I eat, I worry about if I will get D the next day.  When I am at work, I wish I was home resting. I think about it all the time. And when I am not thinking about it, I am taking a myriad of pills.  I am always wondering what will happen to me in the future.
 
What when I get old and frail and too slow to run to the toilet in time? What then?  
Will I be sick for the rest of my life?  Surely, this can't be it?  Whenever I have a social event to go to, I think not of the actual event, but my UC.   It seems to be an obsession.  None of my relationships work out as I am always ill. They all leave me eventually.
 
Should I try and snap out of this way of thinking? It can't be normal.  Does anyone else here find themselves in a similar situation?
 
Thanks for reading.
Back on Pred - 5mg - Steroid Dependent :-(
Azathioprine 150mg
Actonel 35mg
Predfoam Enema
EPA Fish Oils
Various Homeopathic meds
Asacol x 9
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/23/2008 9:52 AM (GMT -7)   
I feel the same way right now. I am hanging on to the hopes that remission is in the near future! How long you been on imuran? Is it helping?
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m, multi vitamin, Azathioprine 100m (started 1/9/08)


SirJames
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/23/2008 9:55 AM (GMT -7)   
I know your pain! Go, do I know your pain. I am going through the exact same thing. I am currently not in a flare-up, but I do have many of the symptoms and they are not as bad compared to a flare-up. No bleeding... But the "not knowing when its going to hit" is driving me crazy! I feel like I cannot enjoy life at all anymore because of this.

Mentally, I am a train wreck. My wife and I are active people (especially my wife) and every time we do anything, my mind goes a mile a second thinking about what could happen, is there a bathroom near by, will I be trapped somewhere, what happens if I have an accident, what will my wife think and on and on and on.....

I acutally have panic and anxiety attacks. Everytime I leave the house my mind starts racing. My wife and I have been invited to go to Ireland this summer, but do you think I got excited about it? NO! All I could think about was my UC getting in the way. Talk about feeling trapped when you are on the plane getting ready to take off! What is a guy supposed to do! I feel like I am actually bringing my wife down with me. I can see the look in her face when I do not get excieted on things as she does. I can even see the frustration.

I have had this condition for over 15 years. I keep telling myself, like you...should I just try to snap out of it? So easy to say....so hard to do. It's not like a swithc where you can just click it off. After this length of time, I believe that my UC has me mentally trainded...but in a bad way. I do try to hide my feelings and emotions from others. I just cannot bring myself to let my UC get in the way for others. Me feeling this way is horrible enough, but to make others feel bad becuase of me? Don't know if I could take that.

I wish I had an answer for you, but I am looking for an answer myself. The depressing thing for me is that there may not be one. :o(

Post Edited (SirJames) : 1/23/2008 10:02:08 AM (GMT-7)


blessteve
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 1/23/2008 10:05 AM (GMT -7)   
When I was in a long major flare it was the same for me. I really hope you two find relief SOON.
Life is good and eventually the flare will simmer down and you will be enjoying life agian.
Just don't give up and live healthy when UC simmers down. When in a flare try to remember the good times.
When not in a flare remember the bad so you don't slack off on the meds and healthy life style that
may help to keep you in remission.
Steve
Diagnosed panColitis 1990.
Current Meds Asacol x4 twice a day. X6 1/15/08
Pred for flares. I still have my colon THANK YOU GOD!!!
vitamins-veggie juice-wheat grass juice--fish oil
Started 1/01/08
Freindly bacteria:raw milk-kefir made with raw milk--natto--probiotics
Antifungus:Caprylicacid, Pau D Arco, Black walnut hull, Oregano oil
grape seed extract.
Anti inflammatory:fish oil  1/15/08 started Turmeric
1/10/08 Started healthy diet again.1/22/08 cultued veggies
 
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 1/23/2008 10:09 AM (GMT -7)   
That is exactly how I feel when I'm flaring. I basically don't leave the house b/c I'm so scared. Hopefully you will find remission soon!!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


SirJames
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/23/2008 10:16 AM (GMT -7)   
The problem with me (physically and mentally) is the I am classified as being in remission.  No bleeding or mucus, but I still have the urgencies to go about three to four times a day.  Once my tummy starts to rumble and the pressure begins to build, I better got to a bathroom real quick.  And boy does the panicing start!  Wow!  It does not take me long to go when I'm on the stool and the majority of the time, I do feel better aftwards.  But, I know that it will happen again.  That's the mental part that I am dealing with...where will I be when it does happen again.  My mind has been worn down after these long years and I am just plain scared to do anything anymore.  Again, my doctor states that I am in remission, but to me....remission should be where you feel like normal person!  The urgencies are not there and that you will not have an accident!  Apparently, my doctor believes remission is where I do not go eight to twelve times a day and there is not bleeding.  That's not good enough for me.  I want to be somewhere that if I need to go, I do not panic and I have time to get where I need and enjoy life!
 
I know that I probably need to change a few things in my life such as diet and maybe taking vitamins, but to tell you the truth...I do not even know where to start.
 
Will we ever wake up from this nightmare... sad

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/23/2008 11:23 AM (GMT -7)   
When I went through my horrible flare it totally took over everything, I was miserable, constantly waiting for the next cramp to send me to the bathroom.

Now I am almost in remission and now I worry about which meds are working if it's the pred or the aza and what if it's the pred and the aza doesn't work for me..........didn't even think I would have to ever consider surgery......... b/c I can't take the 5ASA's anymore and the limited options out there.
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 1/23/2008 1:24 PM (GMT -7)   
SirJames - I couldn't have described my situation any better than you just have! For a second I thought I must have replied to this post already!!

I think our brains get conditioned to fear the consequences of what "could" happen in a worst case situation....we all fear crapping ourselves when there is no bathroom near by. Let's face it, our UC condition makes crapping ourselves much worse than non UC people due to the consistency and odor of what comes out....that would be an extremely humiliating experience for anyone! It causes severe anxiety, panic attacks, and even depression!

I get to the point where I start driving and BOOM - an urge comes along - and I just used the restroom 5 minutes before at home... I go to the local Sheetz convenience store in the am before work - just about every time I get there i have to use the restroom....and let me tell you the hell I go through when I dont catch the traffic light to turn into the parking lot!! Sitting at a stop light w/ restroom a few hundred yards away....my gut starts churning, i clinch up, sweat, get the shakes, a few convulsions, and sit there in pure fear that I will not make it into the restroom!

I feel that UC doesnt necessarily control our lives, but it does have a major impact on how we function every day. We live in fear of humiliation and embarassment - trying to keep a filthy disease secret because the general population has no idea what we go through...most people would just think "gross, that dude just crapped himself...." having no idea the actual situation...

Luckily my wife isnt a socialite, nor am I. I sure used to be however! I loved to party, go hang out with my friends, travel, etc. But I got this disease at age 20. I am now 33, and I get very sad knowing the freedom I was denied throughout my "social" years. College - nightmare. Dating - nightmares. Parties - missed most of them. Sports activities - forget it. Playing in a band - misery and eventually not possible. Riding ATV - possible if pooping in the woods is an option at the time. Travel - misery.

Is this a "normal" way of thinking - absolutely not. However - I think that a lot of people with a chronic illness, especially like UC, will develop some mental issues due to the social destruction that "could" arise in the event of an accident. Can you just snap out of it - no....unless your UC just suddenly disappears. I think it is a normal reaction of our conscience to always think of an escape route, an avenue to avoid catastrophe....

You can derail your brain by taking anti-anxiety or anti-depressants....they do help actually...but there are other side effects that come as a result so they arent the answer for everyone. I have tried them - they worked well but arent the answer. The answer is the elimination of UC!!!! I cant imagine how sweet that would be!
33 yr old male. UC for 13 years. 40mg pred, 12mg Asacol, Fish oil pills, Garden of Life probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland.


SirJames
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/23/2008 2:02 PM (GMT -7)   
mbx5...are we twins?  LOL!!!!  tongue
 
That is exactly how I feel!  I work about 22 miles away from my home.  Luckly, most of the driving is through small roads...and lots of trees.  :-)    I can't tell you how many times I had to quickly pull over and run over to a tree or behind the open door of my car.  In fact, I had to do it just recently and I am classified as being in "remission"!
 
That is one of the reasons why I am so frightened to do anything....because it can and will do what I mentioned above.  Now, if it did not do that for a long period of time is one thing, but to have it do it on occassion...that is what get's my mind racing every time.
 
Yes, I try to stay as active as I can.  I think that I live on Amodeum.  I take at least a half of a pill every time before doing an activity.  I even scuba dive.  Now there's a dreadful thought of what could happen!  :o)
 
I need to be brave enough to talk a lot more in depth with my wife.  It is so hard for me because I do not want to bring her down or prevent her from doing things because of my condition (both mental and physical).  She is one active woman!  Talk about a tom-boy!  :-)    To have her stop doing things that she loves to do or wants to do would almost be unbearable.
 
At this time, I am only on two meds and no other suppliments or specific diets.  I guess I have never added anything else to my list of meds because I really do not know what to do.  As far as I know, I am the only person around my area that has this thing.  I have not local support group that I can go and chat with.  Maybe this forum will help me in some way.  God knows I need it! :-)
-Jim-
(Remission - but having symptoms)
 M/39
Colazol - 50mg X9
Azathioprine - 50mg X2
Predisone
Azacol


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 466
   Posted 1/23/2008 2:15 PM (GMT -7)   

Thanks everyone for your replies.  It is really hard and I can so sympathise with you all..

Lori - I have been on Imuran for years,  it has allowed me to lower my pred but it hasn't allowed me to get off it.

I fight UC every day and people often say to me how strong I am and how brave I am to deal with this.  But, the reality is I am not.  I am always avoiding leaving the house.  I miss out on so much I would like to do in life.   I wonder how much more fight I have left in me.  I am amazed I haven't succumbed to depression.  I really hope I don't.

I think the only thing that keeps me going is the dream of one day I will see remisson. 


Back on Pred - 5mg - Steroid Dependent :-(
Azathioprine 150mg
Actonel 35mg
Predfoam Enema
EPA Fish Oils
Various Homeopathic meds
Asacol x 9
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 1/23/2008 2:59 PM (GMT -7)   
I understand your pain, for me my biggest issue is getting tired, I have so much trouble getting out of bed in the morning.

I do not to let it rule my life though. I still do my best to live the same way I did 3 years ago. Out of the house and active.

I do worry about old age though.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/23/2008 4:06 PM (GMT -7)   
I believe it's the nature of the beast with having IBD...it goes with the territory and it's quite natural for you to feel the way you do when living with a DD like this.

Some people see therapists because the issues become so overwhelming, it's not a bad idea especially if you feel things are spinning out of control.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Lou95
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 1/23/2008 4:20 PM (GMT -7)   
Even though I'm not currently in a flare, it does affect my social life.  I'm not too keen on dating and having to explain.  It sort of wears on your self esteem.  I remember my last boyfriend and I watching a movie and he paused it to ask "Was that your stomach?  I didn't know if it was you or the movie."  It was gurgling away making talking sounds like coffee perking. I was so embarrassed because it was so loud.  When in a flare, it isn't too bad at work since the bathroom is a few feet from my desk.  And, it has a loud fan!  When I was flaring, I couldn't go to the gym or shopping or the movies.  I would have to take a bathroom break before leaving work so I could make it home in time - and I only live 7 miles away.  To go 10-15 times before 8 a.m. while trying to get ready for work was stressful.  I was never on time for work.  So, yes it rules my life in a flare, but just influences my life in remission.  I used to be very social and outgoing - now I do my socializing on the phone and the internet so I don't have to worry about leaving home.  I'm really becoming a hermit.
Age/Sex:  50 & female
Diagnosed:  2005 pancolitis
Medications:  800 mg. Asacol twice a day - in remission; Two 1200 mg. fish oil supplement nightly,
1 Dulcolax stool softener nightly, Effexor-XR 150 mg. daily
 


KSpace
Regular Member


Date Joined Jan 2008
Total Posts : 72
   Posted 1/23/2008 6:00 PM (GMT -7)   
Also wanted to let you know that UC is constantly on my mind. Actually, ever since I started reading this board, the gravity of the situation hit me hard. For the past three-four years, UC has annoyed me and gradually taken over my life, but I've never encountered anyone else with it. Reading all of these posts sometimes gets me scared of all the badness. Of course I am not trying to depress anyone or feel better at anyone else's expense. But after reading some of the situations, I get a bleak picture of the future.

And yes, these days my first thought wherever I go is to know where the closest bathroom is. I'm still able to be active, however I'm very reluctant at times, and feel that I'm holding my poor wife back from the life she would like. I'd be nothing without her though.
15 cm left sided colitis
currently on a trial of cortenemas, and that's all!
keeping my fingers crossed


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 1/23/2008 6:15 PM (GMT -7)   
Same here - my UC is constantly on my mind. It is however getting better now it seems, but I still take a back-pack with me everywhere with a half roll of toilet paper, spare underwear and change of pants... Just in case.

Like all of the above posts the thing that holds me back from going out and doing stuff is the fear of not finding a toilet in time, or worse, being trapped on a train or bus and unable to go.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 2xScoop of Sustagen Sport per day;
    - 1xBIOCeuticals UltraBiotic 45 per day, 1xBIOCeuticals SB FlorActiv per day;
    - 1xHeaped teaspoon of Metamucil smooth orange powder 3 times a day.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/23/2008 8:03 PM (GMT -7)   
I am always aware of my UC, especially when eating out or around the holidays/parties and there is soo much I can't eat or I am afraid to eat. But, with my rectal inflammation, I am able to have enough time to always make it to a restroom even though I am usually red and sweaty on the way and about to scream in pain.
Being in a long flare can really wear down a person. I think the anti-anxiety medication I take helps me stay more calm about everything I'm going through. Also, I find comfort in knowing that Lomotil can help me in a D emergency (although it doesn't always work, it does usually).
I have made lifestyle changes that don't bother me anymore. I found the food sensitivity test especially helpful in prevent D, although at first, it was very hard to quit eating so many foods. It has helped so much so it was worth it. I avoid all restaurants that have made me sick in the past. I read ALL the ingredients when I am grocery shopping. Sometimes I cook a meal for my family that I can't eat and I eat a sandwich. It doesn't bother me much anymore. When going on vacation, I am super careful of what I eat for days before I go. I pack enemas and other emergency items. That's life now, plain and simple. There have been important events I missed due to a flare-up and I really hate it... but I have still been able to do a lot.
For me the hardest part of this has been the thought/fear of surgery and frustration with meds not working and even questions about my diagnosis and even questioning my doctors. But I can't waste time and stress worrying about it all, I am doing what I can and sticking with my doctor's instructions and blowing off my steam here on this forum. If you are feeling very hopeless about having UC, you should talk with your doctor.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm


Numb78
Regular Member


Date Joined Sep 2007
Total Posts : 63
   Posted 1/24/2008 8:11 AM (GMT -7)   
As bad as this sounds to many people it has helped me get some of my life back. I have been in a flare since summer 07 and I can't seem to get out of it. UC is starting to completely control my life. I don't leave the house, I won't go to the mall, social events, physical activities all things I used to love.... All of this because I was afraid of accidents. Well it got to the point where my wife and little girl just should not be made to go through this. So... I broke down and started wearing adult diapers. Yes I know the idea of wearing adult diapers as a 29 year old guy is about as appealing as sticking a fork in your eye but what is has done for me is completely removed the anxiety of having an accident. Prior to wearing the huggies every time I left the house I would panic about were the nearest bathroom was and what if I didn't make it, yadda, yadda, yadda. Now that I have started with the depends the anxiety is gone and guess what I have never had an accident!! Although this is definitely not the best solution but in reality what would you rather be doing sitting at home staring at the TV all by yourself or swollowing some pride, strapping on the depends and get back to enjoying life. My wife is the only one in the world that knows that I wear them but since I've started I've been able to go out for walks with my dogs and little girl, I've been on road trips in the car... things that only a month ago would have seemed impossible for me.

Again this may not be the solution for everyone as it does require getting over the stigma (especially if you're young) but in my opinion getting over the stigma was well worth it for the amount of my life that I have been able to get back.

So my advice is while you're flaring get some depends, carry some spare clothes and try the best you can to enjoy life. A good mental outlook is essential to getting through the terrible disease!! And most important of all remember, what is the worst thing that happens if you have an accident in public... will you die... will you never get to see your family again.... will you still be able to walk... All that happens is you clean yourself up and carry on. There is nothing in life that is worth getting worked up and embaresed over. As terrible a disease as this is remember that there are alot of people in the world who suffer through much worse things and they still do their best to get on with life.

Sorry this was such a long post but all of this thinking is very new to me and I needed to get it out there. I spend way too much time worrying about this disease and what the future will hold and I was exiling everyone in my world because this darn disease was all I talked about. Wearing the depends and taking a positive outlook were my new years resolutions and so far they have been working great for me.

I hope someone out there can get something from this post!!!
Currently in a flare since summer 07.
Current Meds: 35mg Pred, 2000mg salofalk, calcium supplements
Just about to start 100mg Imuran.


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 466
   Posted 1/24/2008 8:24 AM (GMT -7)   

Numb78 - Thanks for your post.  It was really interesting.  You know, I have often thought about wearing some kind of depends but I have never gone out and got any. I don't know why. Maybe it's just some psychological thing holding me back.

But, you are so right.  It is stupid to lock ourselves away at home, too afraid to venture outside. And I am totally guilty of that. And I wasted years because of it. Time to put a stop!  Which brand of depends do you use?  Have you found some better than others?  I'm a 31 yr old male, weigh around 57 kg.  Can you notice the depends through trousers?

Thanks for your advice


Back on Pred - 5mg - Steroid Dependent :-(
Azathioprine 150mg
Actonel 35mg
Predfoam Enema
EPA Fish Oils
Various Homeopathic meds
Asacol x 9
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 1/24/2008 8:54 AM (GMT -7)   
Numb78. Thank you so much for your post!!! When my son was at his worst and didn't know if he could make it all the way to the doctors office without and accident, I bought him depends. He was heart broken, but wore them under his boxers and jeans and then was able to just undo the sides and pull them off when we got there (thankfully did not need it). I think the first time is the hardest. He got better quickly after that and we never had to consider trying them again, but we still have them and I think I will print off your post and show it to him if the need ever arises again.

{{{{Hugs, hugs, hugs}}}} to all of you who suffer from this nasty disease. I so hope that by the time my children grow up there will be better treatments or better yet, a cure!!!
Julie - Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Biotin, Vit/Min
& Daughter 8 UC dx 08/07 Colazal, Prednisone, 6MP, Iron, Vit/Min.


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/24/2008 9:19 AM (GMT -7)   
Yeh, it rules my life. Im on zoloft for the anxiety and I have gotten over my public bathroom phobia wich has helped me HUGELY. I try not to complain to much to my husband cuz it sux to be around a sick whiney person all the time. He told me to just get my colon out and feel better! ha, Im kinda thinkin its a good idea!
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08)


SirJames
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/24/2008 9:19 AM (GMT -7)   
Well, if we are all being honest here... :o) Yeah, I wear Depends when I know that we may be dong something sowewhere and that I may not have time enough to get to a bathroom. So far, no one has noticed.

Unfortunatley, my mental state has gone so far that even by wearing these, I still get panic attacks. I have even take a bit of Amodeum, wore Depends and carried toliet paper with me, but I will still have an anxiety attack. Is that pathetic or what?!?!?!?

I need to get a grip, but I just do not know how.

We just booked a flight over to Irelnad last night. We do not leave until June, but the biggest part on my minde was...uh-oh....what if...what if...what if.... Will I be alright waiting in line at the airport, will I be alright getting on the plane and waiting to take off, will I be alright during landing, will I be alright will the sight seeing that will do.

To make it even more scarey is that we will be traveling with another couple that my wife works with and staying at their cottage. Being by myself is one thing, but when others are around me I panic even more.

Stop this ride!!! I want to get off!!! LOL!!!!!


-Jim-
(Remission - but having symptoms)
 M/39
Colazol - 50mg X9
Azathioprine - 50mg X2
Predisone
Azacol


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/24/2008 9:25 AM (GMT -7)   
Jim I agree, Im alot better when Im by myself! When others are around I worry what if i have to go every 5 mins, what is they are in the bathroom and I need it! what if what if what if!!!!!!! It has made my life easier letting people around me know my situation, it really takes a load off.
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 1/24/2008 10:16 AM (GMT -7)   
I can't let it rule my life, I just can't... when I've been in the midst of a bad flare, I do stay home & basically sleep, or sit outside to get some fresh air. And I wear diapers when I leave the house, which do give you peace of mind. When I'm in remission, or some sort of remission, I try not to think about the UC- I sort of look at it like "the laws of attraction"- if I think about UC all day, it sure isn't gonna go anywhere! I sometimes even question how many times I need to check this board- is it really helping me to read all about everyone's problems constantly? I've been in a semi-remission state for a couple months now- the frequency & urges are still REALLY bad, but they only occur 3-6 times a day. And when they first started up again, I had to go out & do errands & such- & while driving in my car I thought to myself "So if I have an accident, I have an accident, big deal." And it was really liberating. I've been exercising a little, swimming, which feels SO good- I tell myself "I will not be an invalid!" It tires me out a heckuva lot more than it did prior to the UC, but I still feel good. I came so close to getting surgery- cancelled my surgery about a week & a half before it was scheduled because the high Remicade dose worked- I had a lot of time to prep myself mentally for the thought of living with an ileostomy. If I find that my UC does start to take over my life- bye, bye colon! That's no way to live, in my opinion. I don't need a colon THAT much. That being said- I haven't been in a major flare since the most recent one, which resulted in myself scheduling surgery. If I do go into a major flare again, I'll call the surgeon ASAP.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 10mgs/day
 


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/24/2008 10:21 AM (GMT -7)   
Good attitude Eva. I wonder if most people who get their colon removed are happier? What did you learn in researching it?
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 1/24/2008 10:48 AM (GMT -7)   
heck yeah they are! I spent a LOT of time on the ostomy forum, & posted literally dozens of questions, ranging from silly to graphic to you-name-it. I also spent a lot of time on the jpoch website, not as much though cause I knew I wanted a perm ileostomy by then. I talked with ostomy supply manufacturers, talked with the ostomy nurses at length, had the surgical consult & grilled the surgeon, even got ostomy supplies already! I mean, I was prepared! And after doing all this research & soul searching & asking totally invasive questions, I found that every single person I spoke with who has had an ostomy surgery due to UC is far happier after surgery. An ostomy is nothing to be afraid of- it took me a looooooong time to figure that out, but I'm glad I did because now, the prospect of surgery isn't nearly as offputting as it once was. I mean, I'll be honest- No, I don't want to have to get surgery. However, I didn't want UC in the first place! And the argument about "Well, if I have surgery, what happens if they find a cure the next year?"... I don't buy it- "they're" not going to find a cure next year. I still see blood every day, I still have pretty rough mornings, I still get up at night 3-4 times a week....I'm not fooling myself- the REmicade has been working well for me, but it works less & less & for shorter & shorter periods of time with eacj infusion. And that's with the higer dosage. I dunno....I'm planning on riding the remicade wave as far as it takes me, maybe giving Humira a try if I can, but after that there is nothing left but surgery. So that alone will be some sort of relief also- can you imagine never having to poop again in your life!?!?!??! I was sorta looking forward to that!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 10mgs/day
 

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