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Fremen
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 1/14/2009 7:03 PM (GMT -6)   
Hi. I'm new here. I'm just posting here wondering how it is that so many of you are able to stay optimistic during difficult times. Whenever I look at the future I find myself face to face with overwhelming futility and despair. I do not see light at the end of the tunnel and I do not have the will to get there. I read the rules and talk about suicide or ending one's life is prohibited here for some strange reason. So I won't talk about that. I'll just tell you my story. If you're not interested you can skip to the last paragraph.

I'm an almost twenty-one year old male. I've had stomach problems since maybe the ninth grade, but I didn't start having symptoms of colitis until 2007. Things weren't too serious then. Minor flare-ups were it until I had finished up at high school and went to move off to university. Within two days of orientation week I was back home, not feeling well. I had caught some unknown bug that caused me to have extreme fever at sweats about three times a day. When I'd lie in bed or on a couch and start having these fevers, they'd be so bad it would be like I was hallucinating and after words the blankets would be soaked through with sweat. After I began feeling noticeably weaker I checked into the hospital. With the sweating combined with the flare ups, I was losing liquid fairly rapidly. Two weeks and two blood transfusions later I checked out and was now around 30 lbs lighter.

Since I didn't know how long I would have been in the hospital, when I was first hospitalized I made sure to get my tuition money back. Through the next few weeks I finished off my prednisone and started to regain muscle mass. At quite a rapid rate. Both my family physician and my specialist said they'd never seen someone recover so quickly. I had gotten out of the hospital in late October, and by mid-December has already obtained a job and got back to working. Partly to earn money and partly to escape my demonic mother who I would be spending more time with were I at home. She's such a loving mother that she accused me once of faking my symptoms because I didn't want to go to university, and that if I didn't want to go to school I should just get a job. I do not care for her at all.

So even though I was weaker and lighter than I could have been I decided to get a job for something to do. Since by this point I had missed out on too much of the year to rejoin my classes, so I had to wait until next year. I figured if I have a year or so I'd like to earn some money for next year and not spend it sitting around. And from there, things went pretty well. I had minimal flare-ups and continued to work at a job I enjoyed. Then this summer rolled around, it's time to apply to school again, and this time I already have the entire year and more paid for myself. Good deal. I started going to school, this time living at home and taking the bus to school. Taking the bus 60-90 minutes every day to class was difficult and I had some truly uncomfortable moments. But I always made it.

Then for unrelated reasons classes at my school are canceled. For how long, nobody is sure. But for the last few months I've had no class to go to. And it looks like we're going to lose the entire year. Which means I'm now behind two years. Great. During these few months things were okay. I continued to work and earn money for next time school would decide to open. But around new years I got sick with a pretty bad cold, which seemed to coincide with a flare up. That as of yet, two weeks later, has yet to go away. Things have gotten worse.

I was fairly close to having remicade or surgery when I was hospitalized, but I avoided it. Now it's probably going to be one of the two. I don't see any reason to endure either. There is not enough I love about this world to make me want to fight through the pain. I look at my friends who have nothing limiting their lives and get angered as they make no effort to do anything with their lives.

I look into the future and don't see any good. I do not see anything at all. I am alone. I have even tried praying to God, but no one spoke back. I feel as if my thoughts echoed back to me from the dark and no one was there to listen. As I have my entire life. So I am wondering how some of you are able to enjoy your lives as much as you do when faced with this kind of adversity. Is it because you have a reason for being here, such as children, lovers, etc? Or is it just that you do something that other people rely on you for, something where people need you? Or is it just pure love of life? I'm not sure what it is I'm lacking, but I seem to be missing whatever it is that keeps you all moving forward in spite of everything. I really admire you and wish I felt the same.

Best wishes.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/14/2009 7:08 PM (GMT -6)   
You take one day at a time, the way I see it, even without having IBD you still have no guarantees of what the future will bring, besides which, no point in getting ahead of yourself always thinking about the future...just live each day to the fullest doing the best you can to cope...I've had IBD for 18 yrs this year (in a continualy flare the entire time), you learn not to make too many future plans and to take each day as it comes, it's not perfect and still can be depressing but it works, besides, I don't see any other realistic option.

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


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 1/14/2009 7:20 PM (GMT -6)   
I don't really know what to say to you- it sounds as if you have a lot of other things going on aside from IBD causing your depression. Have you thought about moving into your own place? I'm no "lover of life", happy-go-lucky, glass half full sort- I'm much more the opposite. But yeah, what other option does one have? This is your life, live it. I don't know how you expected your life to be, easy as pie, walk in the park, whatever. But it's not- no one's life is. Who knows what the future will hold, really. Even the best laid plans go to waste. Try to enjoy the simple things- a hot cup of coffee or tea, a good nap, the sunshine. Yeah, it's sappy, I know. And if worse comes to worse, just go thru the motions- don't feel, just do- get up, do your AM thing & do your day to day thing. Don't think so much.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/14/2009 8:02 PM (GMT -6)   
Fremen,

I certainly understand your feelings. I am 23 and was dianosed with ulcerative colitis when I was 14 years old. I mean, it's hard enough being a teenage girl, but with a disease like this? I was pretty sure it was the end of the world. And sometimes I still feel that way. When I'm running to the toilet every half hour, all I can think about is the future and, like you said, it doesn't look too bright sometimes. The thought of meeting a new boyfriend and having them around while I'm like this is just mortifying. It's hard to make new friends or enjoy social outings because I'm constantly worried about needing the bathroom.

It's really, really easy to get depressed about.. well, everything. I mean, this isn't the prettiest or easiest disease to live with, that's for sure. Then again I suppose no disease is. I try and tell myself it could always be worse, and that's certainly true, but it doesn't make our suffering any better. I think the thing that keeps me going is a) fear of death and b) SOME hope for the future. Things just can't be bad forever. Maybe they will find a miracle drug, or maybe we'll just go through with the surgery and get it over with, which in the end wouldn't be so bad. But you've got to just think that things can and will get better with time, and just let it go.

I've been reading a lot of books on Buddhism. I've never been a spiritual type, but their viewpoint just makes SO much sense to me, and I've felt a lot better about life since getting in to it. I wont drone on about it here in case you're not interested, but it's something that's helped me anyway.

Also, the depression board on this site is full of GREAT people and it's one I frequent often, if not to post than at least to read. They always have great advice, maybe you should copy and paste this post into one over there for some other perspectives.

Either way, I hope you keep coming back. Maybe HealingWell could be something that could help you come to terms with things.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/14/2009 8:17 PM (GMT -6)   
You are talking to us about your feelings, and I think that's a good start. I had pretty sad periods in my life, but am glad I hung in there, because life became fun again. When I get frustrated with something, I ask myself, will this matter to me a year from now? or 5 or 10 years from now? I know if must be frustrating to be behind in your plans, but after you are able to finish school, and several years go by, you'll realize the time lost was not that significant. What are you studying?
I also don't like my mother very much, I know how that can feel so wrong or sad, but it is what it is.

I don't know about what options are right for you, or how much pain you have to be prepared for with surgery or Remicade, but it sounds like you have a lot of motivation when your just feeling better, so I hope you can get there somehow soon.

Keep in touch.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 1/14/2009 9:59 PM (GMT -6)   
I think we all face a lot of challenges and what probably bothers me the most is the unpredicitability of the future. I wasn't afflicted with this illness until I was done with school and for that I consider myself fortunate but I face a lot of the same issues as some of the younger people I see on this site. I am worried about relationships and finding a companion that is willing to accept me with all my issues. It is not easy to see yourself as attractive and desireable when you are running to the toilet every 30 minutes. I don't know how I keep myself from falling into a deep depression. It's kind of interesting because I've never been the type to be able to deal with something like this. I don't see anything specific that is worthwhile in my future. I have completely gone off path on my goals because I have lost all determination due to lack of energy and desire. I don't have children and to be honest, I don't intend on having any because I have seen so much suffering in my life, I don't want to bring another person into a life even remotely simiar to the one I have lived. Sometimes I ask myself what keeps me going and I guess it is mostly the love I feel for my dog and my family. I don't want my family to get upset or worried over me. They don't know I am sick and I worry it would be physically painful to them if I let them in on my problems so I have to act like everything is great. I think it is most important that you are passionate about something in your life. Whether it is your dog or nutrition or desire to help others or art, you have to allow yourself to live and love and enjoy yourself. I hope you find your passion and continue to complete your education. Stay focused and follow a path that makes you happy.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/14/2009 10:40 PM (GMT -6)   
It always comes back to the fact that it could always be worse and unfortunately for many in this world it is : (

When I am truly feeling my worst and the pain is almost unbearable and I have almost no energy I think about the poor souls that have UC and are living in pure poverty with no meds, no supplements, no GI docs, no heat, no a/c , no tv etc etc...or having UC and being blind(my God imagine being blind !)...the cancer patient that has 3 mos to finish their lives on earth...oh boy : ((((

We are so blessed compared to many others out there.


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days


JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 1/14/2009 11:38 PM (GMT -6)   
I have had this disease for 27 years, since I was 8, and I understand completely what you are feeling. It can be such a humiliating and depressing thing to go through. What has helped me over the years is always looking at the sunny side of life. I made it through adolescents, college, dating, husband and children all just fine by keeping a positive attitude and not being ashamed of who I was. Be open and honest with people. You'll be surprised how very understanding people are. Learn to accept each day for what it is and do not be apologetic for the bad days when you have them, Take care of yourself first and foremost. Find someone you know well and can trust to confide in. It really helps to have a buddy who will listen to you without judgment. Most of all, everyday, find humor in the disease. My multiple trips to the bathroom everyday afford me the time I need to read the paper or a good book. Quality alone time.
I wish you well.
 


novus99
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 1/15/2009 12:31 AM (GMT -6)   
Fremen you wouldn't happen to go to York in Toronto would you??
Just asking because I have some friends that go there and the TA strike canceled this academic year.

Anyways, I'm in a similar situation to you. I'm 19 and graduated high school last year (diagnosed with proctitis/UC in 2001). This year I had planned to work and go to univ next year. My plans didn't work out either. I've been in a flare-up for months and I'm 20lbs underweight, I have very little energy and no meds have worked well for me so far. I'm probably going on Prednisone this week or next. This flare-up has gotten so bad that I honestly can't work and haven't since last october. I basically have no life now and I am depressed.

I don't know if there's a point to this but here is the best advice I can give you:

1. see a psychiatrist. depression is a side-effect of UC for a lot of people, especially young people like you and I

2. http://www.toronto420.com/crohns/index.html [this option may not be right for you depending on the legality and availability of cannabis in your region]

Try to keep your head up and remember you aren't alone.

JM21204
Regular Member


Date Joined Dec 2008
Total Posts : 254
   Posted 1/15/2009 12:39 AM (GMT -6)   
There are absolutely days that I am miserable and depressed about this. I think about it all the time and how much it's hurt my plans in life. The thing that put it in perspective for me was day 1 of my diagnosis. Long story short: very sick, lots of pain, suffering and weight loss, no idea what is wrong with me. Can barely walk by the time I get scoped and immediately admitted to the hospital in the first room they can find for me. Where was my room? The cancer wing. I was the luckiest person on the floor - at least what I had wasn't something I could die from! I bet they'd all have traded places with me in a heartbeat.


33 yr old female
Diagnosed with Pancolitis in 1/2007
Baby due 3/2009
 
1600 mg Asacol a day
Ferrex
Pre-Natal Vitamins
Lovenox
On and off Prednisone, 40 mg then taper
 

Post Edited (JM21204) : 1/15/2009 5:04:22 AM (GMT-7)


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/15/2009 2:04 AM (GMT -6)   
Fremen, I am glad you are able to reach out to us. It stinks when people (especially family) don't understand what you are going through. You sound like you have a lot going for you. You are determined and self-sufficient. That's more than many 21 year olds I know.
It's very important for you to find someone to talk to. A friend, a clergyman (whether or not you believe in God or belong to a specific religion), a teacher, a therapist. Getting some of the anger, frustration, and sadness out will help a bit. Many here take a mild antidepressant.
It stinks that you were dealt this nasty disease. Rather than dwell on what could have been, what might have been, what should have been if you didn't have UC, work on getting healthier and keep going. Other kids your age may not have UC and may be living a happy-go-lucky life but it doesn't make it better.
Both my kids have IBDs. My 17 year old daugther just had surgery. Her life will never be the way it was before UC. She accepts the fact that she has a "new" normal. She missed out on alot the past few years because of this disease. She knows she can't get it back. She can only move forward.
Try to take some of your time and volunteer. If you like animals, help out at an animal shelter. Volunteer at a senior center. Anything. And it doesn't have to be alot of time. It just seems that helping others keeps your own life a little bit more balanced.  
As for delays in continuing your education...there is no rule that says you have to go on to college and get your degree by a certain age. Nowadays there are more and more older people (ones not just out of high school) who are in college. In some ways, that is better. These people (you included) have experienced a bit of life (good or bad) and can bring a new perspective to school.

--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/15/2009 10:46 AM (GMT -6)   
The worst thing for me would be to feel like I had no hope and no control over my life and health. The first GI I saw when I was diagnosed with UC made me feel this way. She pretty much told me "you have a chronic disease, there's nothing you can do, you'll be on medication the rest of your life until you get sick enough to have your colon removed." This is a very negative and hopeless message. She seemed surprised when I burst into tears.

There were times when I felt depressed and discouraged, but I felt better by taking control of my situation. I found a lower stress job with an understanding boss. I armed myself with knowledge and read everything about IBD I could get my hands on. I found another doctor. I kept a food, medication and supplement journal to track my progress and reactions. I prayed alot and relied much more on my faith than I had when I was well. I began mindfulness meditation to control stress and anxiety without additional meds. I began taking several supplements to reduce inflammation and restore healthy gut ecology. I changed the way I eat. I began lifting weights regularly. I began to feel better and better. This is not to say a UC diagnosis isn't life altering, but you do have alot of control over your health and you do have hope. After a couple of years of struggling, I've found the combination of things that helps me maintain remission and UC is no longer a factor in my life other than my involvement here and as a moderator on another IBD forum.

My advice to you is to get counseling. There are clinics that can provide help for free or at reduced cost, based on your ability to pay. Finding a counselor with experience working with folks with chronic health problems would be great. Find a loving and supportive church family in your area. This can be a surrogate family for you and a lifeline of love and faith. This will probably be unpopular advice, but considering your comments about your mother and your home life, you might consider putting off school for now and looking for a job with the intention of moving out asap. Stressful home life is going to prevent you from healing. Find a small place you can afford that will be your peaceful retreat. Find friends and relatives that can be supportive. College or university will always be there for you and you can return to school anytime. The right employer might even help fund your return for a degree. Right now, your top priority has to be getting the help you need to get well - both mentally and physically.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 1/15/2009 11:57 AM (GMT -6)   

I have often thought about it this way...and maybe to some it's a load of garbage, but it's helped me.

I feel that, although unfortunate, we have this challenge because we CAN handle it and ARE storng enough. You look at the healthy person beside you going about their day as if nothing is wrong. It is very possible that if faced with what we are faced with, that would be the end for them. We have to think that everything happens for a reason. For one reason or another, we have this challenge and that's exactly it. A Challenge. You CAN deal with it and sound like you're doing a good job. If you need to talk to someone or come on here to vent, that's a way of doing the challenge, but you're doing it. You will succeed, but you just have to accept your challenge first...and fight it.

There is always someone facing a challenge that maybe WE couldn't handle either, and that's why it wasn't given to us.

Hang in there bud. You'll be fine. Keep coming on this site. There are great people here to help you.

PS - you said you put on muscle mass really fast. That's one thing you're better at than me already. Any suggestions?

Cheers


Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - currently feeling ok
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg 45mg 40mg 35mg day - Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 1/15/2009 1:02 PM (GMT -6)   
Hi there I hope you,have been helped by the replies you have received if only to know that you are not alone,I think since you've been diagnosed,like myself you have not acheived full remission,and sometimes it is difficult to find any positives,I became very depressed thinking that I would be suffering like this for therest of my life or having the surgery which I hate the idea of aswell.I also think its very difficult for family members to really understand what your going through so try not to be to hard on them.
I liked the reply from the young lady who said that Buddism had helped her,and I can understand why I think you should,maybe look into some sort of emoitonal healing to help you come to terms with what has happened to you over the last year or so just the hospital experience can be traumatizing in itself, after you accept what has happened to you,and the fact you have a chronic condition,Ithink things will get easier for you,try not to look around at everyone else and think,why me,most people endure enough suffering in their lives I dont know anyone who,s walked a smooth easy path with no pain and frustration,and I know a lot of people who have endured a lot more than me.
Take care this forum I have always found great and the courage, and kindness of poeple always amazes me
around here you will always find someone who's been through the same,and understands what your going through that in it self has helped me see a bit of light at the end of the tunnel

hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 1/15/2009 1:46 PM (GMT -6)   
I saw a cd cover the other day with two stick figures. One was being rained on and was crying her eyes out because she was getting wet. The other one had no arms or legs and was perfectly happy. The name of the album was "'some people have real problems".

It made my day.

Yes this disease can make you feel like your life is over, but sometimes you just have to adjust your life. You don't really have a choice. I think it can feel so hopeless but then one day you wake up and you realize that you are okay. Your still alive.
Jessica 27/F
Remicade
Entorcort 9ml
Lialda 2.4GM
Citalopram 20 MG
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal, Culturelle, dicyclomine)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 1/15/2009 9:17 PM (GMT -6)   

Hey Fremen, I understand where you're coming from. I've had this stupid disease for over a year and I still have days where I get depressed. I think about how different my life would have been without UC, how it's unfair that I had to get it and now have to be jealous of healthy people my age who are enjoying life, the fact that I had to give up going to my first choice college and now can't pursue certain careers, etc. And honestly, some days I feel like I have nothing to live for b/c of the things mentioned above; I only have my parents, brother, very few friends, and that's it.

But I guess what keeps me going is the fact that maybe the future will be much better than this--maybe I'll find someone who will love me and maybe I will have a job I'd enjoy. And also the present could be much worse; I could have had no insurance, I could have had cancer or something else without a cure, I could have been living in a 3rd world country, etc.

If you have the money, I'd suggest seeing a therapist; I personally enjoy it and definitely helps me to sort out my negative thoughts. Just try to live in the moment and keep coming to HW for any questions or venting!


Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 

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