Community Forum

Hi Everyone,

My name is Emily.  I'm 24 years old.  I was diagnosed with UC when I was 22.  I've had a hard time dealing with my UC at times.  I always want to know "why me?".    Do you have any ideas on where to meet new people? I think it would be helpful to become friends with people who have UC or CD since they would understand these illnesses better.  I've had friends who don't understand and stopped hanging out with me because I couldn't go out, eat pizza, drink, etc. when I was really sick.  I'm still worried about getting into the dating scene because of the illness.  I'm worried what will happen when a guy finds out about my disease.

I'm on Remicade every 8 weeks, but have had some issues with breathing difficulty and rashes. What the future holds for me scares me.  I'm working full-time as a admin asst., but I feel like my illness is holding me back.  Every time I get overstressed at work, I have to go to the bathroom and it is very embarrassing.  I dislike that others can eat foods that I simply can't or else I have issues-corn, nuts, citrusy fruits like apples and oranges. 

Also, any tips on exercising?  I have issues with gas and it's terribly embarrassing to workout when you are gaseous.  I've lost 50 pounds so far (was on prednisone when I was first diagnosed), but I need to lose more.  My goal is to lose 30 more pounds, but I feel like I'm stuck on a plateau right now. 

Any advice on living life with Ulcerative Colitis would be truly helpful.  I know that this won't be a walk in the park, but living a healthy and happy lifestyle would be the best gift I would ever get back.  I just want to be in remission for as long as possible. 

 Reply posted for Emily Kate.

Im 25 and have had it for 6 years or so. I will admit that the group of people I hung out with slowly changed over time. I stopped spending time with friends who were always out partying, playing sports and spent more time with the ones who had no problem just lounging around watching tv or playing video games. When it comes to understanding this I will say that I have only met one person who truly understands and thats because he has CD. My wife who has been with me since before I got sick still doesnt get it and she will admit it. We were dating when I got sick and she cared about me enough to help with bills since I was missing so much work so there is someone who is out there for you. 

When it comes to work dont stress, dont be embarrassed. Once people know about it they will be more understanding if they cant find you. My co workers understand what I have and that some days I will get paid to sit on the toilet. 

Oh how I miss some orange juice.  I do miss foods, we have modified recipes to deal with my issues and my wife has accepted that. Kroger Chocolate milk is amazing so I buy it when its on sale and its worth the gas. I bought some otc gas pills and it works like magic. Its trial and error and finding your boundries. 

You lost 50lbs and you need to lose more? My issue is gainging weight. I have finally gotten up to 170lbs and im flabby so im going to try and lose that the right way and not by eating a whole dominos pizza. I have learned my limits on working out to deal with my fatigue issues. Yoga also helps wonders with stress release. 

Tip for living with this is its going to be fine and while walking in the park make sure there is a nice wooded area so if you need to go you can, lol. (See laughter) The best one is when someone says poop, crap i.e. and you get on them for language and how those words are offensive to you and you will get a good chuckle. 

I hope I have helped. 

 Reply posted for Emily Kate.

I suffered from UC for 3 1/2 and then started researching online. My husband was my donor and it has now been almost 4 months of being back to normal, having normal bowel movements - no gas, no cramps, no urgency, no blood, etc.  I am back to eating anything I want after 6 months on the Specific Carbohydrate Diet.

If you would like to read my story and see links to other articles, email me.

Just don't give up thinking it is hopeless - there is another way. I am not on any drugs and completely symptom free.

These digestive issues are caused by a imbalance in the bacteria in your gut, most likely from antibiotic use or sometimes food poisoning.

Just google Fecal Transplant and you will find how it is being used to heal digestive issues - I had UC and it healed me.

Email me for a link to my blog - kwi_sky@yahoo.com

Teri

 Reply posted for Emily Kate.

Hi,

I'm in my 40s and have had this since I was in 6th or 7th grade (a very tough time to be told you're different and won't grow for a while!) but can very much relate. I think we all go through the range of emotions from anger to denial to fear. And working full time and trying to do everything our friends and colleagues do, and not seem different is very challenging. I am lucky to have a very understanding boyfriend/partner and my job is finally being flexible knowing my situation. However, it never seems that anyone truly understands unless they also have a chronic disease, that isn't visually obvious to others. People often don't understand that we can look fine, but not feel fine. or that commuting on three trains can be extremely stressful because we have to worry that a bathroom is nearby and available on short notice!

Hang in there. I'd like to say it's easy to find support groups in person, and there are some, but I haven't found that many fellow CCFA members who are into going to in person meetings. Probably because we are busy trying to do everything else. I like the online community a lot though. And I like the advice of the others who said you will find friends and family and a boyfriend who understand, and they aren't easy to find (unfortunately) but there are employers who also are great and supportive. One of my goals this year is to help those who are "non traditional" with our special needs, can work and be considered contributions and make a living, and get the support and flexibility they need given their/our unpredictable conditions. 

Finally, HUMOR and LAUGHTER are by far the best way to deal with it! If you can laugh about it, you will find others will too!

Hang in there!
Tracy

 Reply posted for Emily Kate.

Hi Emily! I'm 24 yrs old as well. Living with UC is difficult and at times I get so tired and just want to stay home and be left alone. Working and having UC is stressful. Many times I'm so embarrassed because my stomach will make noises or I need to escape to use the restroom. For me it's an embarrassing topic and having to bring it up to someone hoping they will understand is tough. I diagnosed with UC when I was 15 so you would think I'd be used to everything by now but I'm not. I'm still learning and having to decide what I can and can not eat. I wish I could meet new people who have what I have but I have yet to find anyone with UC. I do have relatives who have UC but no friends who have it. 

 Reply posted for Emily Kate.

Check out here for a brief article on exercise with UC:

http://evidencebasedibd.blogspot.com/2012/12/exercise-and-ibd.html

You aren't alone, and many of us wish that we had others to talk to with the disease.  Not so much to commiserate, but to just not have to explain when we rush off to the bathroom in the middle of a conversation, or elect not to have a slice of cake at someone's office birthday party.  It doesn't have to be someone with IBD for them to understand - I am lucky enough to have a couple of close friends that understand and are considerate without being patronizing or taking pity.  If you have anyone close you can reach out to, over time they will begin to understand if they care about you.

Dating is tough - I've hit the same problems you note.  All I can say is to get out there and give it a go.  Some folks will understand, some won't (and if you can figure them out quickly all the better).  The tough thing to time is when to tell them - I don't recommend a "Please to meet you, I have UC" approach, but you don't want to hold out too long.  If you can pick a good date where there won't be food needed (a movie with an aisle seat is good), you can get a date or two under your belt before an eating-based excursion.  Then, I would go with you have some "dietary restrictions" and provide details as they need them.

There are local chapters of the CCFA just about everywhere if you want to go to a meet-up.  I've done a few Walk for the Cure events and its nice to be around others that can relate.

Best of luck!