Community Forum

Hi,

I have been battling UC for 6 years now and have only been in remission once for a year, in 2008.  I am 22 years old and I met my fiance when I first went into remission.  We have been together for about a year and a half.  We have been living together for about 6 months and everything was going really well.  I began to flare in August 2009 and have been rapidly going downhill.  I am now on steriods again and if this doesnt work I am most likely looking at surgery.  My disease now has me to the point where just leaving my own home is a battle.  I have to worry about the urgency, pain, and the possibility of having accidents.  It has started to really affect my relationship.  I think he is bored and feelings like I am restricting him from doing things.  What he doesnt understand, now matter how many times I try to explain, how difficult it is to leave my home and try to live a normal life.  Everywhere I go the first thing I look for is a restroom and if I dont find one I start to panic.  I am in incredible pain all the time and just keep hoping that eventually medication is going to work.  It is starting to effect my emotional state.  I have become moody and exhausted.  I try to control my moodiness as much as possible.  I feel it is unfair that I have to sit at home alone while he gets to go out and enjoy himself but at the same time I feel it is unfair that he doesnt get to because of me.  I feel like the clock is ticking before he has just had enough of doing nothing.  I dont know what to do.  Does anyone have any advice on how I can keep things interesting or put a new flame in my relationship before it is too late?

Thanks,

Stephanie

 Reply posted for jenmmk30.

Things will get better?

Are you the creator himself/herself? How do you know this?

If you are so certain, can I get it in writing that "things will get better?"

Are you a real estate agent? I have them tell me all the time "This house is a great investment and you will make money off it." So I say to them, "Can I get that in writing?" They respond with a blank stare. Because they are just trying to sell me on an idea and they can't guarantee me crap! If they could they would put it in writing with a guarantee.

There are no gurantees that things will get better. It's nice to think ositive, but if we all that positive and that worked then there world be no illnesses, wars, poverty, etc. Where there is a guarantee is that we have the choice to repsond to what happens in or lives. That is called free will. The creator gave us that. And, understanding that is called living in the moment and appreciating every moment we have.

Good luck with your things will get better theory. Look me up in 40 years when you have lost some of your abilities and loved ones, and we will discuss the matter.  : )

 Reply posted for sap259.

I  have had both UC & Crohn's for 16 yrs. I've been thru it all, believe me I have.I am sorry to hear about yur troubles. I wish I could snap my fingers and take away your illness.

I can relate to having relationship issues.I lost the love of my life because I couldn't b there 4 her all the time & go out with her to social events, road trips, and etc.

I think Das gives great advice.I have pooped just about everywhere. In alleys, in the woods, in small garbage cans. It sucks I know but big deal!

Here are my thoughts.U have a serious illlness.It affests yur life.U have 1 life to live.Life can be short.U should know this better than any healthy person.I say (I am not a doctor or telling u this is exactly what u should do...it's what I do) live life to it's fullest...enjoy every moment.What I mean by that is this: I have traveled around the world for 3 years to over 40 countries, skydived, raced motorcycles, snow skied off massive cliffs, etc. you get the point.What I do is I take my meds and I take them in hi doses so I can enjoy the moment and enjoy life.My doctor says I have decreased my life expentancy because of the hi doses of strong meds I have taken.I have peripheral neropathy, arthritis, liver problems, soft bone disease, & a few other minor things.I am 35 years old.My motto is 50 good yrs of joyful living & living life to it's fullest is better than 80+ yrs  of conservative boring existance.

Bottom line is no one wants to sit at home all the time with a mopey popey sick person.People like to be active.It feels good to be active.It feels good to get out.

So, do whatever it takes to feel better and get your ass out there and live life.If u do that I promise u will still finish the race with the so called healthy people the only difference is you'll be wearing a diaper. LOL  :  )

Now go out there and kick some a**!!!!!!!!!!!!!!!

 Reply posted for marilynaz.

You deserve happiness!!!! Don't let your illness stop you from living life. That Mr. Right will come along when you least expect it. He will love you for you & accept your illness. There are still some good men out there. Keep your chin up!!

 Reply posted for sap259.

I just wanted to say that dealing w/ Crohn's or Ulcerative Colitis is very devastating. If someone loves you for you, then they will have patience with you for bathroom breaks, in the event you need to change clothes, it should be no big deal. I am getting married in April 2010. My fiance & I have been together for about 6 yeas now. He is understanding about my Crohn's. I have had Crohn's since 1990. I'm now thirty. I take remicade & methotrexate. Try & keep your chin up!! I know it's hard. It's part of life & unfortunately we have to deal with the cards we are dealt. Things will get better!!

 Reply posted for sap259.

Hi Sap,

Try the Specific Carbohydrate diet or just eating low carb with plenty of good fats for energy (cold pressed oils, butter, animal fats and fish oil). It really does work. I was in a similar position to you, with UC  in a constant flare and my doctors starting to talk about surgery, but now  I have a very normal life on slow release mesalasine and occasional pred enemas. I have not taken any steroid tablets or stronger drugs since I changed my diet three years ago.
Within a few weeks of starting my head cleared, my energy came back, skin problems resolved and  I had less achiness and fatigue. Over the following months my weight returned to pre -uc level (it dropped a bit too much and then stabilised) and the uc improved slowly but dramatically. If you do try diet expect a few ups and downs on the way. I had to be very strict with SCD but can now go out for a meal and enjoy almost anything on a single occasion.

Great advice from Das. I can almost laugh about some of the situations I have found myself in!  Thankfully,  much less common now.

Lots of  good wishes for better health

 Reply posted for sap259.

Hi:

I wish I was as strong of a person that the posters here are. I'vr been alone for 21 years. My husband lived through 2 surgeries with me, but my life with my Crohns has been so uncertain these past 2 years, I wonder if even he would have stuck with me. I don't even think of going out with someone, much less get into a relationship.I might consider dating another Crohns or UC patient.  I've come to accept my life for the remainder of my time on earth as being just me and my cats. I wouldn't ask anyone to understand because I feel most people say they do but really don't and wonder what they got themselves into.   Marilyn 

 Reply posted for sap259.

Hi,

I was in a relationship for about 11 years. For that 11 years, I've been a real trooper when it came to going out with my gf. No matter how much I was hurting, I never said, "No, I don't want to go out because I'm not feeling good". I just went and hope for the best. Of course, best rarely came in our condition. Urgency, panic attacks, frequent bathroom breaks and accidents were frequent. I always carried extra pair of pants and underwear when the accidents happen. Oh and the pain from the fistulas was sometimes unbearable. But I stuck it through. I broke up with my gf about 3 years ago but still kept in touch with her. Recently, I went to go house sit for her and we discussed about how we dealt with my Crohn's. As it turns out, yes, she was impatient at times when I had to go to the bathroom alot and the frequency of the accidents. She also felt very embarrassed when the waitresses at the restuarants would come up to her after the meal ask her if she was done with the table. I didn't know this at the time because I was in the bathroom, pooping my guts out. Our relationship kinda ended badly because I was in a serious depression and felt worthless and broke it off. However, years later we have come to a better understanding with it. For example, she wanted me to come see her in a show, had tickets and everything but I called it off because I wasn't feeling well. She felt disappointed but proud that I stood up and recognized that I wasn't in a condition to attend.


So my advice to you is that what we have isn't  something that can not be taken in so quickly. It's something that takes time for everyone around you to adjust to. You will find people who are very understanding and help as much as they can and people who will help out eventually when they realize how bad this thing is. Best way to cope and find solace is to find more people who are going through this and ask for patience from people who aren't.

 Reply posted for sap259.

Hi SAP==

 You have my sympathy. It is REALLY hard to have a sense of humor when one is having an "OOOPS, I just ---my pants" moment. And, unless you have this stupid disease it IS hard to understand. Just know that you are not alone, and that the disease is not who you are, it is just something you have.  I know I have had this for a long time, but was just recently diagnosed.  I have been reading everything I can find, but the best message was what was posted before me (and I have found it listed in many places). just keep a change of clothing etc etc and know where the restrooms are.  Good luck and hang in there.

 Reply posted for sap259.

Everyone with IBD deals with the issues you are struggling with ... have had Crohns for 23 years (am now 47) so I know where you are coming from. I have been married to the same wonderful wife for 21 years. Hope I can offer some hope, guidance and practical tips.

First, as far as "accidents" go, you need to lighten up about the possibility of them. Its not fair to limit yourself and those you are close to just to avoid not making it to a bathroom on time. I have used the woods, car (just pull over open the front and back door on the same side, and you have an instant stall) and other places. And you know what, who cares if someome sees you going while you are out and just cant make it to a rest room in time.

Humility is an important part of coping with IBD. Keep toilet paper with you in the car, backpack or elsewhere. Thats enough to keep me from getting anxious about needing to go at the wrong time. You can find places to go most of the time and if not, well you have some wash to do. Keep some handi-wipes in the car, a plastic shopping bag, air freshener and a change of clothes. No big deal. If you mess yourself, just clean up and move on.

If those you hang with love you, they will understand your needing to plan ahead and if you dont make it to a rest room they of all people will understand and support you.

One time I had to use the ladies room because the mens room was occupied. You know what? Even when I came out and got a wierd look from a lady waiting life went on and it was not a big deal.

So keep t-p handy, know where bathrooms are and if you cannot get to one improvise. You will laugh about it and will enjoy your new found freedom. More to come later on other issues you mentioned. God loves you!