sick of uc interfering with my life

Once again my son has a field trip to the pumpkin farm and he comes home from school and says mom and dads can come I want you to come. The place is at least 45 minutes away on a bus. Last year I followed the bus. I will do the same if the teacher is okay with this ( I just say I have a medical condition and if I need to use a bathroom I need to be able to stop) I would go on the bus if it was less than 15 minutes away but not 45 minutes. Then my son who is five says I want you to come on the bus with everyone else. It just sucks he doesn't understand. Neither does my older son and I'm just sick of uc interfering with my life this isn't the only time this has happened. it has been with other stuff also. It is just a bumer. Sometime I wonder why I don't just have the surgery. The remi isn't really working and I know i will eventally but I'm scared of that also. I just sucks not only do I suffer but so do my loved ones.

Ask yourself how much more of your life are you willing to compromise or miss out on?

Sue

Sounds as though you answered your question already...you have a lot more on your plate with family and commitments to at least have you seek consultation regarding surgery.

I seem to remember last year's struggle with the bus/car decision...did you take Imodium that time? You could take it this year at least to get you through the day.

If the remi isn't working, how does your husband/family feel about you having surgery?

q

I have never tried immodium becasue the pa told me not to use it. Constipation issues after. My mom keeps telling me to use it though. Last year for the pumpkin farm I followed the bus because it was far away.  Last year I was not bad like I'm getting now. With me having issues in the morning sometimes it makes me very uncomfortable. On all the other field trips I went on the bus if they are less than fifteen minutes away.

Quincy- I just posted another post but i am looking into surgery. The remi isn't working they think I developed lupus on it. Will find out the end of the week. They want me to try a trial drug and it is a spin off of tysybri which has cause something like mad cow diesese in 42 patients Two fatal. Now she said this new drug has an extra componant that they think makes it go just to the colon (not all over the body) but she said we won't know for years if someone developes mad cow on this. I think not.. I have a month before I see her and we will talk to a surgeon. My husband said I don't want you to have either. I said well not an option. He said no on the trial drug though it is my decision.

Thanks everyone

I'm sorry you are facing such frustration. Regarding the pumpkin trip, just know that kids are very resilient, and they can't get everything they want from their parents, for all sorts of reasons! But they will lay the guilt trip on you. Don't force yourself to go on the bus. You'll probably be miserable with worry, even if you are having a good day. And what if you need to stop, how much worse would that be for your kid! Drive your car. Give yourself peace.

I also hope your husband supports your decisions, and that he understands adults can't get everything they want, either! We know that too well.

How I got rid of my UC:

I was lucky to be in europe when my uc started. I was told to order Silver water and to take it as follows:

before breakfast I swallowed about 4 table spoons (your might need more or less) of silver water and right away a big gulp of water (room temp) so it gets down to the stomach asap.

The same in the evening before going to bed.

After about 3 days my urge for sugar stopped!! And after two weeks my pain was GONE!!!! I kept this up for a total of 3 months.

This was in 2003 and the next time I took it was last year when I got a stomach flue and it flared up a little.

So read about silver water and try it. What also helps is to stay away from lactose!!! Lactose free milk and so on are so easy to get now a days and
it tastes great.

If it works for you spread the word

good luck

anunakki

Eva Lou- I can try humira she said (this was my next choice after the remicade failed) but they think I have remicade induced lupus, i will find out by the end of the week. If this is the case I can never be on a TNF blocker again(remicade, humira, etc.). She said if I don't have lupus she will give me three months on humira and if it doesn't work than the trial drug or surgery.

Peety-My husband has been supportive but he hates it too. He doesn't tell me what to do and he just listens but with the trial drug this scares him and so does surgery. He has health issues too. He is on S.S. because he has major back injuries from an injury he got while in the army. It sucks with us both having health issues.  he said to me once i can't stand the thought of you being sick and I couldn't deal with it if something happened to you. I have it in my head he will leave me if I need a permanant bag or if something else happens or he will think I'm nasty. He has never said anything bad but I feel this way.

yeah my husband was looking up drug induced lupus from remicade and then he came across all the side effects of remicade and he said do you know people have died from this, and it has this side effect, and this one. He says this is serious stuff. I said yes i know and he said I'm starting to think even if you have a permanant bag it would be better than sitting on this drug or doing the trial drug. It is just hard for everyone involved. We don't like either choice I have to make. I also know I'm not the only one. I have been so tired that I can hardly function. It is horrible. like today I slept 10 hours last night and than I took a nap today for two. I'm so tired right now I could go to sleep. It is just interfering with my life so much. I would love to feel "normal" again. You take that for granted until you get sick yourself.

WIMOMOFTHREE - As a jpoucher who was in your shoes last year (anemic, failing remi, and given the option of humira, trials, or surgery), I took a look at all the things I had missed in the last year and decided that I wasn't willing to give up my quality of life anymore.  I don't have kids, but just the list of things I missed or couldn't fully participate in was long.  My GI gave me all options, but in my case he recommended surgery.

I had always assumed that I would have surgery sooner or later - but I had hoped for later.  Having surgery (and I am a 3 stepper) was the best decision of my UC life (for me).  It is different for everyone but I can honestly say I wish I had done it sooner and hadn't gone through the mess that Remi became for me (bad allergic reactions).  My hubby wasn't thrilled w/ the bag, but he also said that he knew that it was temporary and if it was perm he would have adjusted.  I know that if I have to I can go back to it and we will be able to work w/ it with no problems.  While there are people that have had problems w/ their pouches, there are many reasons and solutions for this.  If you opt for surgery and find a good CR surgeon, I believe that the chance of many of these problems can be greatly reduced.

I went from Remi infusions every 4 weeks and 20-30 pills a day plus iron infusions as necessary to nothing (once I got off pred).  Now I take 3 pills a day - voluntarily.  That's just one of the many bonuses of being colon free for me.

Just my 2 cents.

BTW - I'm in WI also - Milwaukee area.  If you'd like someone to meet face to face (if you're in the area) or to talk/email with let me know.

ducridr-I live in West Allis. Who do you see for a gi and where did you go for surgery. I see a GI out of Froedtert I really like her. She said they have surgeons there that they highly recommend that have done thousands of surgeries for jpouch, bag. I would love to meet sometime.

WIMOMOFTHREE
Go to the ostomy forum and read how we ostamates feel about an ostomy. It's not a bed of roses but it gives you your life back. It ain't that bad. It's really pretty good.

Dan

rpgdancer

Read my post. It's right above yours.

Dan

your appendix is attached to your colon, actually when you have your colon removed they take your appendix too!