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I was diagnosed in May 2011 with ulcerative colitis, although it has been a year I have only seen a slight improvement of my symptoms. I have horrific abdominal pain, awful joint pain and find everyday living to be strenuous and exhausting. I am 21, and I am just so angry with life right now. Everything is so hard and it seems like no matter what I do the symptoms still persist. I am currently receiving remicade infusions and I am taking Lialda. I was on 6MP which gave me pancreatitis and a lovely 5 day hospital stay. I just got put back on prednisone because I am bleeding again. For me prednisone is a love hate kind of thing. It usually makes me feel functional but the weight gain is awful. Last time I was on prednisone I gained 25 pounds which is a lot considering my size. My self-esteem plummeted and I just finally lost all that weight to turn around and do it all over again. I am feeling isolated and depressed. My whole life caters to this disease. I am becoming overwhelmed with the enormity. I am scared I am never going to find a husband or be able to create a little family which is one of the things I want most out of life. I guess I am just looking for some support from someone who can relate to how I feel and understands what I am going through.

CROHNSBOY83:

You pretty well summed up the way I and alot of us feel most of the time.The hardest part may be when you know just a few short years earlier some of us were healthy and active and shortly later,speaking from my personal feelings,I feel like a waste of space or like I'm getting in the way of everybody else who is on the go living their normal lives.Thi is a great forum.I'm glad I joined just to read others' ways of coping.Thank you all  :O)

You are never alone in our battle to live a normal lifestyle.I went tthrough Remicade but it stopped working & I continued to become worse until I had illeo surgery 6 years ago.I did well for a few years after but as a truck driver it became too much work & hours to do the job I used to do & was expected of me.I have been trying part time work but that does not give any health insurance and barely enough to pay for all of my medical supplies.Like the OP posted,I also feel defeated,useless,incompetent & basically lifeless over the past several years.So here I am joining this support group to meet others who have dealt with or are about to deal with life with IBD.I have no family or friends who understand my issues & I can longer deal with the emotional & financial aspects alone anymore.I just feel like curling up into a corner & dying sometimes but I know others have learned to cope with the same problems I have & I'm hoping to meet some good,caring people here.Thanks for taking the timeout to listen.

BamBam

 Reply posted for crohnsboy83.

I'm checking out your community as we speak. I think we can all relate and agree that emotionally IBD can be very hard to handle and I am a firm believer in talking about things.

Keep your head up! It will get better. I met my partner 2 years ago and while I was not sick then, she has been amazing over the past 6 months dealing with my disease and educating herself on it. I am dealing with the "Crohns blues" as I like to call them, and I'm having a hard time talking to her about it. Mainly, I know she worries, and I know she is starting to feel as hopeless as I do becuase she cant "fix" this.

It gets better! We all just have to keep telling ourselves that!

 Reply posted for cmk215.

I know what you are going through. I know it can be so easy to want to give up, feel defeated. I know what its like being ashamed and afraid that you will never be able to have a family of your own. I dealt with this feeling a lot in 2010 and 2011. I had a girlfriend in 2010 who after seeing me hospitalized for a couple weeks, receiving 14 blood transfusions because I would not stop bleeding, started to get scared off. Then her mother began filling her head with thoughts, telling her I would never be able to support a family because I would always be sick and I would die young. Unfortunately she listened to her and she broke up with me shortly after I was released from the hospital. I began feeling like no matter what I did, no matter how good of a boyfriend I would be to a girl that they would always leave me because of my sickness. I know that this isn't true though, deep down I have to believe it. There are people out there who are able to cope and deal with you being sick and will accept you for who you are. If you don't believe that then it becomes way to easy to give up and crawl into a hole and shut yourself off from everyone else. I have started my own community and forums, www.thecrohnscommunity.proboards.com , just launched it this week. My goal is to help people like us who are having a tough time dealing with emotional wellbeing as well as physical. Please feel free to stop by and let us know your story, its just a small community right now but I hope to help as many people as I can cope with UC and CD. I hope to see you on there, and keep your head up. Just know that you are not alone.

 Reply posted for cmk215.

If you want to talk text me 617-694-3754
Jordan

 Reply posted for cmk215.

I feel for you. I was also diagnosed with UC just a few months after you at age 23.  Went through the roller coast ride with losing weight from the disease and gaining weight with prednisone. It made me seriously depressed looking in the mirror at my chubby, hairy, pimply face.  I was diagnosed just 2 months after getting married and I just couldn't believe that my husband would ever find me attractive again.  Of course, this wasn't the case and he has been so supportive over the past year.  I understand where you're coming from.  I felt like damaged goods...like a defective model.  But what I felt and what my husband felt about me were two entirely different things.  You will find your match, and I'm sorry you are going through this.  When you go through this, you wish that no one else has to deal with what you're dealing with.

We want to have kids, but it's hard to think about starting a family when I still don't have my health under control.  Like you, I had horrible joint pain (knees), crazy abdominal pain, severe bleeding that resulted in two hospital stays.  The last hospital visit I was assigned a surgery team in case they needed to operate.  It's a lot to have to deal with at our age when we're supposed to be taking the world by storm.  I look at my friends who are starting jobs, having kids, living life and I get really jealous sometimes.

My dad also has UC. He was diagnosed at 18 and he's 60 now.  The last time he had a flare was like 10 years ago.  I look at him and it gives me hope that one day I can be where he is with his UC.  I see my uncle who had a colectomy and is doing great now.  Surgery is scary, but if you need it, you can get through it.  UC sucks.  It just sucks.  Hang in there.

 Reply posted for cmk215.

Don't feel defeated, I know it is easier said than done.  I have also been through alot, Remicade, Humira, Lialda, Prednisone, hospitalizations.  It is a lot to deal with but I want you to know that it does get better.  It takes time but you have to stay strong and positive (again easier said than done).  I have now had Colitis for 4 years and it keeps getting easier.  Don't get me wrong I still have good days and bad days but I have gotten used to it as my "new normal".

Remember that emotional health also plays a big role on this even if you may not think so.  You will be the only one to help your emotional health as well so again please stay strong and don't give up, I know it's easier to give up sometimes but it is not worth it!

Best of luck 

 Reply posted for cmk215.

Thanks everyone! It is really helpful knowing that I am not the only one who struggles with this disease everyday. And also that many of you have found loving and caring partners who stand by your side through it all. I hope to be so lucky one day. Sometimes I feel so alone it is unbearable. My doctors are now talking surgery which scares me to death. I recently started the SCD diet. I am on day 3. It seems this is one of my last resorts so hopefully I can find some relief. I just want my life back.

 Reply posted for cmk215.

I totally relate to how you are feeling. I have Crohn's & feel like it runs my life too. Most days I have to force myself to get out of bed. It gets really depressing & annoying being in pain all the time. But we have to stay strong & don't give up girl! Maybe they will find a miracle drug soon!

 Reply posted for Cnrusso90.

I totally understand your concerns.  I was diagnosed in 2004 and still struggling with my emotions involving the disease.  Currently, I have been in an intermittent flare for the past year....the minute I discontinue the Prednisone, I immediately flare up again.  The 30lbs weight gain during the past year has been very depressing and I feel like a stranger in my own body.  Fortunately, I found and married my husband of 2years who has been nothing but supportive and understanding.  I cry almost everyday because I feel that no matter what I do (being compliant with the my meds, exercise, healthy eating, massage therapy), my flare is not subsiding and my weight gain due to the meds is inevitable.  We would like to start trying to conceive, but I am reluctant as I am in the middle of a flare and am afraid of the medication side effects on the fetus.

Don't stress about finding a partner.....you'll find the person u are supposed to be with, someone who will accept u and your condition for what it is. :-)

 Reply posted for cmk215.

This was almost like reading my own story. I was diagnosed in 2008, my senior year, and was doing well until this year. My boyfriend and I had just moved in together and I had never told me I had UC, it was something I was ashamed of. I was afraid he would be scared off by it. However, living together makes it hard to hide frequent extended trips to the bathroom, lack of eating and rapid weight loss.

It took him awhile to come to terms with the fact that I am sick and will be living with this the rest of my life but now he has learned to deal with it and research it on his own even. Whenever I have a flare I get depressed and generally just crawl into my hole until I have to be social. I think you're doing the best thing though by wanting to talk about it. I didn't talk about mine for almost 4 years, like I said I was ashamed. However, talking helps so so much. You will find someone who accepts it too. 

We are so young we should be embracing life as much as possible even with UC, as difficult as that is sometimes.