Feeling troubled

[George]

I've been trying to keep it together for a while now, but I'm not succeeding. I wish I didn't have IC and I wish my life was back to where it was 2 years ago prior to IC. I've just started Elmiron and I thought I might be winning there but I feel unwell taking it. I just feel nauseous. My domestic situation is that I'm living out of a suitcase at a friend's place and that arrangement may finish sooner than later. I'm trying to find a new home after having to sell my apartment after a relationship breakup. I also have other issues which I don't really want to mention here at the moment. My relationship ended because of my illness and I just don't know whether I will ever be able to really have another relationship again. I just wish I could find a little comfort at the moment. I'm lonely and I just don't have any familiar things around me. Nor is there anyone like me nearby that I can talk to. My friends just don't simply understand what it is like to have a lousy bladder. How am I supposed to ever meet someone special with a problem that like this. I don't want to depress anyone by my post. I'm just so unsettled. I want just something familiar around me. I know this will pass but I just feel unwell and I think that is making me just feel so down.

I had dreams of wanting to travel. But I really think it would be so difficult for me with a long plane flight, and having to find a bathroom all the time every hour. Just trying to find peace and quiet to use a stall in a crowded men's room can be difficult for me. I usually know all the restrooms in the city where I live. But the thought of travelling to unfamiliar cities and not knowing where the nearest bathroom is would leave me just so anxious. So I'm not sure whether I'll be able to travel in the future and see the world which was something that was so important to me.

Thanks everyone for listening. I'll snap out of it soon.

George

[evanseri]

George,
I know how you feel, but I am sure things will get better. I have had this disease for about nine years now. I have had good times and I have had bad times. I know the depression and anxiety it can bring and most of the time it feels as though no one understands. I have just recently found this website myself and I have found it to be quite nice to talk to others who may actually understand. I have been pretty down myself lately because I have been having lots of pain and I am so afraid that I will never feel good again. It makes me really depressed, but as all of us with IC know you have to try to be positive and keep hoping that something will help. I am sorry to hear that you have broken up with someone because of IC. A good partner and the person you will truely be happy with will love you for you, and not punish you because of a disease that you cannot help. You will find someone, it just might take time. It has taken sometime but my fiance is finally starting to understand how much this disease actually effects me. He has held me as I cry and listened to me rant and rave about how unfair it is that I have IC. I too wish to be back in happier times. And even though he is very supportive nothing will take the place of talking with others that have the disease because they are really the only ones who actually understand. Please keep your head up and keep the hope alive that things will get better. As my favorite saying goes "this too shall pass". Things will get better and you are not alone.:)

[Kip]

Hi George,

I had to have life saving major surgery 8 weeks ago, bowel resection, bladder resection and urinary diversion created via a stoma. 2 days before my surgery I got made redundant from work, 3 days after my surgery my partner of 9 years left me, asked the head nurse at the hospital to tell me that our relationship was over. My partner also told me that they found me repulsive, disgusting and did not want me back in our house with my stoma. It was hard as all those thoughts were already going on in my head and then to have someone you love and apparently has loved you, say those things is quite devastating.

I have lived with my condition for a long time since I was 18, I am now 33. I had not told my friends as like you I felt awkward discussing something like this with them as it wasn’t something they were experiencing. Unfortunately I didn’t get a choice when I had my surgery as it is now more obvious that I have problems and so I decided it was about time I did tell my friends. My friends have been fantastic and I wish that I had told them sooner. They have asked to see how my stoma works, will I show them what I have to do to look after it, and we have even come up with a name to call my stoma, “Davina”.

There is more light at the end of the tunnel. I have met another partner who accepts me for me, finds me sexually attractive even with a stoma and has helped me come to terms with a lot. Has asked for all the information possible to understand my condition better, attended hospital appointments with me. George, you have to accept that your illness will be part of future relationships because it is part of you. Knowledge is power without it your partner will not understand and will feel powerless to help you at the times you really need help so bear that in mind, let people in be it friends, family or a future partner.

Your illness does not have to dominate your life; it has to fit in with your life. I have been able to work full time, in a very senior position for a long time despite having to catheterize 30 times a day and 10 times at night. I have only had one episode of sickness throughout my employment and that was to have my surgery. I also have other significant health problems. I have been able to compete at national level for the British Cycling Mountain bike team winning the championship last year. In order to do that I have been very disciplined with my condition, preparation before events/traveling, listening to my body. It’s is not easy at times and is daunting going somewhere new and not knowing where the bathroom facilities or how clean there are going to be. I used to carry around a portable toilet in the back of my pick up truck; the pick up part has a Truckman top so it looks like a big Jeep, so I got the windows tinted so that no one could see in. If I wasn’t driving I would ensure that I had contacted the tourist information about where disabled toilet facilities could be located, I used to takes a change of clothes and alcohol gel to cleanse my hands prior to catheterizing.

Prior to my surgery, for two months I was virtually house bound unable to go anywhere as I was in so much pain, I wasn't able to sit down as my perianal skin had broken down completely. Now I feel so different two months later.

Regarding long haul flights you could get round the bathroom issue by using a urinary sheath.

These is a testing time for you right now, but write a list of the thing you want to do and then find a way to do them. Don't live your life with regrets. Relationships come and go, as do jobs, you only get one life make it what you want it to be.

Best of luck

Kip

[evanseri]

Wow! Kip you are an inspiration to us all. Thanks for the remarkable and couragous story. It is stories like yours that make me realize that i don't have to let this disease control my life. Thanks for sharing! :)

[sandramac]

:grouphug: :grouphug: Just wanted to send you supportive hugs George, as we have all been there and things will look up soon! Hugs Sandra:cat: :cat: :cat:

[ICNDonna]

One thing you might try is to empty the elmiron capsule into water and take it that way. Some people find it's the capsule itself is the problem. You just discard the empty capsule.

I hope you find a place of your own very soon. You'll feel more relaxed in your own home.

Warm hugs,
Donna

[traceann]

George, all I can do is send you big warm fuzzy hugs! I think at some point with this disease (or another) and just plain lousy life circumstances, most of us - I know I have - have been where you are in how you feel. It can look so damn bleak sometimes. When I was with my first fiance, erm, I should say had just been dumped by him while I was still in the hospital, I had just had surgery for my appendix and they discovered trouble with my intestines so I lost a bit of them - they then told me that they thought I had Crohn's, and then after getting out I was not healing properly after the surgery - so a "simple" procedure became not so simple. I can remember just losing it in the doctor's waiting room while waiting for my check-up appt, I could not stop crying - all I could think of was here I am told all this awful stuff and I was dealing with it all by myself. I am sure the people must have been freaked out in the waiting room, seeing a girl bawling her eyes out, lol. It was at that point, I think I was basically on "suicide watch", I don't think I was that low - but I was LOW, but I frightened my mom and my doctor quite a bit by hopeless and depressed I was. Unfortunately, for me there was no one thing to snap me out of it - it came gradually. It came when I started healing and feeling better (that was a long process too, ugh) - my mood started to improve when I saw me start to improve. It was one day at a time. But in the moment you don't think things will ever ever get better. No one could have told me that they would, I was so convinced I was doomed.

The same reaction came with my diagnosis of IC - while I was thrilled to have a name for it and get started on medications, I was angry and depressed all at once by how much pain and misery I was in. I didn't think I would ever have a life again, I was positive that that was a good as it got. My husband had had enough of that attitude and started to literally force me to be positive - he'd make me say "I will be fine!" over and over again until I sounded like I believed it, lol. And I didn't really, but it was that philosophy of doing it enough to where you start to believe it kind of thing. As corny and hokey as it may sound, that shift in attitude made a huge difference in how I felt and how I improved. Granted, wasn't overnight as I'd wanted, but it helped.

Please don't ever give up on your dreams of travel or anything. Use them as a purpose - your reason to fight and get to the point of making them real. Every day you are one day closer - just know you WILL achieve it. And think that, ok right now at this moment I may not be able to - but I will be able to someday. For me, my motivator was wanting to eat my favorite foods again, lol. Kinda simple, but it helped me focus on doing what I had to do to get myself to that point! ;)

Just know that no matter how you feel, you have us to vent to and to hold you up when it's a bit too much for you to do by yourself. There will be better days - I am sure of it!!!!!!

Love and Hugs,
Tracey

[ads]

George,
Maybe traveling and getting into a new environment even for a short time would help you. Over the years, I have had to learn to travel in a great deal of pain/urgency for medical appointments. Travel must be done differently with a chronic illness. Please make allowances to make yourself feel as comfortable as possible. I had to learn that the hard way. It is a killer to purchase a more expensive flight because you can't take the longer one or spend an extra day coming or going for rest, so you can bear to get back on the airplane. If you do plan ahead and take very good care of yourself, then a travel can be good for the mind and body. There are many lists and tips on the message board and website about travel.

I noticed you said you were nauseous while taking the Elmiron. It is difficult being single, so are you eating enough healthy food? Even though it may seem like you are it can be easy to get malnurished when one doesn't feel well and has to take care of their own food preparation or gathering (LOL, yes it can even be hard to eat out at times...) If you don't have food to cover the meds it can cause problems. Yes, the bottle may say it is OK to take on an empty stomach, but with our sick bodies it just might not work well. Just a tip I learned from my stupid mistakes...

Best wishes,
ads

P.S. I am single too and while no person is exactly the same as I read you post I could relate to the loneliness you expressed. It is terrible! If people have a wonderful support system that is terrific, but sometimes it just isn't there for some of us and we have to find our own inner strength. I wish you the best and hope your IC starts to improve and you feel better about your life in general, until then just take it a day at a time and cope. One day is a lot easier to handle than your whole future. There is plenty of your life left to think about the future! Again, sending you my best wishes and hope.

[ICLori]

Hi, George, (((HUGS))) I'm so sorry for everything you are going through. I wish I could help you find a new place to live...I just think once you have your own place, you'll feel much more settled and secure, and things will start to get better then. It's so hard having to deal with all of this, plus the grief of a break-up, plus the pain of IC, plus the fear that the Elmiron won't work for you.

I agree with everyone, it might be best to empty the capsule in a glass of water, or even take it with food until your body adjusts enough to it so that you aren't sick anymore.

I have found with meds that the side effects generally go away within a few weeks, and it was certainly that way for me with Elmiron. So please hang in there...maybe just take it with some food for the first couple of weeks, until your body is used to it, then you can try taking it "full-strength" so to speak.

I'm so sorry you are down - I can understand, who wouldn't be with all of this? I wish that I could help. I hate feeling sad and depressed, it's awful, and I feel so bad that you are going through this.

Hopefully each day will get better - we have to hope for that - and hopefully you'll soon find your own place and that will be exciting. There's just something wonderful about having your own space, your own place where you feel safe, like a cocoon.

And I'm keeping my fingers crossed that the Elmiron will kick in soon for you, that you will be one of the lucky ones who gets better within weeks of starting it...wouldn't that be wonderful? It sure is something to look forward to, isn't it?

I know you must be so tired of hearing this, but please hang in there a bit longer...things will get better, I'm sure of it!

And boy Kip's story is very inspiring, isn't it? I guess we have to do that, we have to fight against this disease and not let it take everything in our lives away from us...it's hard sometimes though.

Things will be okay. We hang in there today and do what we need to do to take care of things and of ourselves, and tomorrow is another day - a better day hopefully.

Blessings and hugs,
Lori

[George]

Thank you everyone for rallying around and sending me support. I do appreciate it. We are such a close ICN family. Well another day has arrived. The sun is shining here so that is a good thing. I appreciate everyone sharing their stories and encouraging me. I think I was just feeling sorry for myself last night. I've just been living on frozen microwave meals out of a cardboard box for a while now, and just staying in someone else's home and feeling so nauseous it all just got to me. I can't remember the last time I had some fresh fruit or vegetables so I'm not really looking after myself at the moment. The last thing I seem to feel like is cooking a meal for myself, particularly with this nausea. Anyway I'm going to try take the Elmiron out of the capsule and see if that helps. I had such high hopes for Elmiron. Okay, well I'll stop the pity party and put one foot in front of the other and attempt to move in a more positive direction today. I think the thing is trying to accept that I have IC and it is part of my life. I just keep resisting that and want to be like I was before.

Well everyone, thanks so much for sending support so quickly and sincerly. The boards are such a lifeline to me at times.

Your friend,

George

[traceann]

George, I think I speak for everyone here - no thanks necessary!!! ;)

Yes, it's hard to feel your "best" when you aren't eating the best, aren't feeling the best etc. I know that for me, just cooking a good meal is a "comfort activity" even if I don't eat it, it's my stress reliever. It's crazy, but the first thing I did when I found out my father had died was start to cook... It's a great tool for me, :)

And yep, try taking it out of the capsule. I had heartburn troubles from it, and once I started doing that, that went away. Also, I too sometimes had nausea from it, so I took it with a light snack, a little food seemed to help as well!!!

BIG hugs to you!!!!!!!

Tracey :)

[ads]

George,

Good to hear from you. I am glad the sun is at least bright outside. Hang in there. Provide the best care you can for yourself. I know it is tuff being alone so it requires a lot of extra effort. (I wish there was a good meal service in your area, where you could have meals brought in until you feel better. There was one in NYC that wasn't just your average type of home meals, but very healthy for people with chronic and terminal illnesses.) You are in our thoughts.

ads

[George]

Thanks Tracey and Ads for your thoughts. I'm moving forward as best I can. Still got this nausea despite taking the Elmiron out of the capsule. However, I'm going to try and prepare myself a nice dinner tomorrow night. I don't know what to make as I have lost all my confidence in the kitchen, but it has to be better than living off toast or microwave meals which I am having at the moment. Any suggestions for something easy to prepare would be greatly appreciated, lol.

Thanks again everyone for your kind thoughts.

George

[ads]

II don't cook very well and don’t have the energy for it, so I am a Trader Joe's fan. They have a lot of natural prepared foods and everything is listed clearly on the label. Even their frozen dinners taste like a real meal.

I find it simple to pick up prepared foods at a good grocery store or better yet Trader Joe's or Whole Foods, but it is kind of expensive.

If you like fish the guys at the counter can tell you how to cook the different kinds and usually give simple instructions, then proceed to the frozen food section for a bag of vegetables. Ice cream is an easy dessert if it fits with your IC diet.

I apologize for not being very helpful as cooking just isn’t my thing.

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[traceann]

Hmmmm, what's your favorite comfort meal? Maybe you could build on something from that starting point? (and depending on what your bladder likes, lol) I always like a nice grilled steak or grilled herbed chicken breast with some fresh/frozen veggies on the side and maybe some herb roasted potatoes... (I use my cast iron grill pan, lol)

Have you tried a light snack with the Elmiron? That helped me greatly, just some crackers or I'd have some mozzarella cheese (like a piece of string cheese), just a small amount to have something in my stomach when I took my dose.

Do let us know what you come up with for dinner!! ;)

HUGS!!!