Crohns and Colitis Exchange

There is no simple solution to what you're going through. We all have gone through this, maybe in different ways, but we have gone through it.

I was diagnosed with UC about 3 years ago, and I felt like I was being held hostage in my own home. I didn't want to leave the house and had a terrible, terrible time accepting this disease. My family was absolutely wonderful...they probably didn't really understand what I was going through, although my husband accepted it better than I did. But my kids and grandkids would come over, and never try to force me to leave the house. Just having them around was good enough for me, although I was constantly running for the john. That didn't bother them, and we all made jokes about it. My two older grandsons would say things like "OK grams, we're timing your run to the john". The laughter seemed to help with my attitude, but not the diarrhea. Thank God for them. And some of my friends were more understanding than others. Unless they've been there and/or done that, it is not easy to understand. Not for us, and of course, not for them either.

When my GI Doctor finally found the right combination of meds to control my UC, I gradually found the confidence to accept my disease and get on with things. Now, while I'm in remission now, I still have the question mark in my head about whether or not I will have an occurance while I'm at Wal Mart or at the mall. It's just something we learn to live with. So far so good. I've been in remission for about 7 months now, but we just never know when this will come back with a revenge. We just accept it, make the best of it and get on with things. I did lose some friends who thought I was just a hypochondriac, but I don't need friends like that anyway.

So, my advice to you is....as difficult as it is, accept it as best you can, don't try to hide this from family and friends, keep in touch with your physicians so they can help keep track of what is going on with you, but most of all.....accept it (I know it's difficult at times), and most of all, THINK POSITIVE. This really does help. And laughter is so important. I cannot stress enough how much I appreciate what my grandkids have done for me. We laugh all the time when we're together.

Keep us posted. We all care on this site so much. And remember, think positive, not negative. And laugh as much as possible. Just little things can make you laugh. And God bless. We've all been there, done that.

Thank you for your story, it really is encouraging. My family lives 9 hours away, so I don't have that blessing in my life. I try to rely on God for everything, but it's really hard to figure out why at 31, I feel like my life is ending. I'm allergic to all meds so far, and the next step I have to consider is Biologics. Until then, I will keep trying to keep friends in my life. Thank you for your encouragement.

A phone call to family is helpful too. Have you tried probiotics? Dr. Swanson's Ultimate Formula Probiotics worked wonders for me. About a year ago I added them to my UC meds and the difference was amazing. I realize that they don't help everyone, but they help more than not. Many on this site have been using them with success too.

You can order them on line at swansonsvitamins.com. $14.95 a month's supply and $4.95 shipping. That's for one or more bottles. It is always just $4.95.

Remember that we are all here for you because we do understand what you're going through. And family is important, whether in person or on the phone. And some friends are much more understanding than others. And you know who they are. Again God bless...prayers help a lot as well as positive positive positive thinking. Keep in touch.

I understand where you're coming from Luna. I've lived with Ulcerative Colitis and now have the less than satisfactory cure for it aka a J Pouch. It depresses me a lot too. My life is more restrictive with it too & I fear it will never be the same again. If I had to do it all over again I would have just kept my diseased colon and search for other alternatives. Although that was over 20 years ago and I sure wish I had the internet to work with then. I only wish I could have tried this http://www.medscape.com/viewarticle/478342 It's not a sure thing but at least there's no damage done. You see since my colon is amputated now there's no turning back. I learned the hard way just how dependent my body was on the whole thing. By chance if you live in the Chicago area I'm open to meeting with you too.

How long ago were you diagnosed? And are you comfortable with the physician that is treating you? I don't know how long Miserable SOB was diagnosed before he had the J pouch surgery, but that, I believe, is not something that is done relatively soon after a diagnosis. Again, I'm not sure about that tho.

But, there are many options these days. And as I said, if you're comfortable with your physician, listen to him, and by all means, let him know exactly what you're going through. Maybe counseling of some sort would be good for you. I know they have counseling groups in most large cities for just this sort of thing. Ask you Dr. about that....he/she would have all the information on that.

Good luck...and please, don't give up....we're here. Remember that. Again, God bless.

Thanks for the interesting article, and your empathy. Unfortunately, I live on the East coast, or I'd take you up on meeting.

I was diagnosed in January, and I am on my second GI doctor. I am comfortable with him, and since he used to work at the Mayo Clinic before moving my way, I think he is pretty well educated. I saw my dr. last month, and my next appointment isn't until the end of November. He is as stuck as I am with what to do for me. Since I'm allergic to sulfa drugs and mesalamine, and have had a severe allergic reaction to all the drugs he's tried so far, I am running out of options. The next drug option for me is Biologics, according to him, but he won't try them until my HPV (yay, another issue) is inactive. I get a repeat pap smear halfway through November, which is why I am going to see him at the end of November. He doesn't want to put me on Biologic drugs while I have active HPV, as I would then run the risk of developing cervical cancer, which would seriously complicate things more than they already are. My doctor is as frustrated as I am.
I just keep praying because I don't know what else to do...and yes, I do take probiotics, but I will check out the website you suggested as well. Thank you.

It's frustrating, I know. But there is something out there that will help you, be it Biologics, or whatever.

Diet is also very important. Has your doctor advised you on this? The best I can do, diet wise, is if something bothers me, I don't eat it. But then again, true to form with this ridiculous disease, there are times that I want to eat something that caused diarrhea before, and then it doesn't cause it when I try it again. Makes no sense, I know, but then again, does anything about this situation make sense? Same old, same old. We just never know on a day to day basis what we'll be confronted with next. Every day is different.

Hang in there. I know that's easier said than done, but be strong. Keep us posted....we are so interested and concerned with what you're going through. God bless.

I hope things get better for you. I was HPV positive back in 2007 and have been on Remicade since like 08-09. I haven't had any abnormal tests since, thankfully. And to answer your initial question. I do get down sometimes. Being in your first year of marriage is tough when you're sick all of the time. My husband has gotten frustrated a few times this week with me being in bed from C Diff. In the end I know he understands that it's not my choice. Luckily we have a really great support system- I'm a long ways from home but have a ton of great friends here. Plus we have a strong faith (my husband is a pastor). So I know in the end it's going to be ok. Like I said in another post.. In heaven our bodies will be perfect- no more sickness no more pain. It's something to look forward to.

Thanks for the encouragement. That's awesome that your husband is a pastor and that you have such a great support system. I don't have that here, and my family doesn't live here, so I am envious. I feel like a social disease, not just someone with diseases.

LunaNatasha

I have just joined this organization in order to find people out there that have the same condition I have in life. Chrons. No one, (at least that is how I felt) no one knows what life is like as you first, find out about the diagnosis, then beginning to TRY to understand what is going on, as well as every other thing that life throws our way! At times, I didn't leave my bed/couch for about 20 hrs...sleeping! How could I be this tired, I asked myself? My conclusion was two factors, I wasn't taking care of myself the way I should've been, which to me, is a LOT of work to eat and live healthy. It is a different lifestyle. And speaking of a different lifestyle, our condition makes our lives take a turn towards a different type of life. I remember THE DAY I was finally diagnosed in the hospital due to a flare up they found out finally instead of saying I only had IBS, they started me on many kinds of medicenes for it including steriods that made me fat with a puffy face (just in time for my semester abroad in Espa?a!!!) But I just faced what I had, and at that time I still had faith on having a "normal" life...whatever that is. Well, as of now, I have rejected every medicene so they put me on Remicade every two months, and if you know Remicade, you know the price is crazy!! The Remicade helps, but I had to jump through so many hoops in order to recieve medical assistance through the state as an independent adult, which is usually a rare thing, But NOT IN MINNESOTA!! Their healthcare assistance. Such as in North Dakota (where I am from) don't give assistance to any adults that are 21 years of age and they would only receive help IF THEY ALL OF A SUDDEN HAD A DEPENDENT!!! WTF!! so yes, I am sure that many women may have chosen this same path, I however did not. I talked to my counselor and she pointed me towards Minnesota Care and from then on, my medical bills have been under control but I guess, what I am trying to get to, is that after EVERYTHING, here we still are...we make it day to day and I think that just knowing that today is a good day and make the most of it, and don't worry so much, that is my problem, I worry about spending time about worrying! lol! Well, if you find any of this info or anything interesting you should blog back and somehow without everyone seeing, we can exchange e-mails...right? I don't know I am so new to the website. Well, anyways, I don't have internet access in my home but I go to the library or to YES, my mother's house to use her computer. I will be checking to see if you have posted back and if you want to talk more...

I'm from ND and have medical assistance under the patient advocate foundation.. I don't have dependents and make a decent living.... you can also get assistance from the people that make Remicade, if you talk to your doctor they will more then likely give you the info for it.. It's pretty easy to get accepted actually.

this was kind of interesting to me. I live in ND also, right across the river from MN. When I called ND about getting any sort of medical help with bill and such, they guy told me to move to MN and get MN care my only option. So if you could give me any info on how to find out about the medical assistance in ND that would be great!

The assistance I have is for your copays for prescriptions or Remicade... just search Patient Advocate Foundation and look under co-pay relief. It's a lengthy application process, also if you have blue cross blue shield for insurance I recommend joining their accordant care program, they willl also help you find assistance in other areas. There is also Remistart, your doctor should have more info on that. It basically covers a certain percentage of each Remicade dose. I chose the Co-pay relief because it'll pay for all of my Crohn's medications, or at least up to 2500 a year.