Bad Day

[kwiatek7]

Beth, I am sorry that the past few days have been rough on you. You should not have to deal with this as you struggled long enough. I hope you can move up your appointment and that you don’t have c-diff again. I also hope the GI can give you something to make you feel better and figure out what’s causing you all this pain/discomfort (maybe the food you ate like others have pointed out). I will keep you in my prayers. Hang in there!

Hugs,
Agnes

[NanciT]

I'm so sorry Beth, I hope you can get into see the GI today. Thinking of you and hoping you are feeling better soon!

Nanci

[beth22]

No test results, but I do feel better today (3 day rule I guess). Had M this morning, so that is not good, but I have had it with c diff and without, so the test will tell. Saw my regular GI who is going to run some blood tests for vitamin deficiencies and ordering a stool analysis from Genova per my request. It will tell if I have any good bacteria that has established itself or not. Meanwhile, just wait for results and will see motility specialist in a few weeks. My donor if I need to do transfers will be gone for two weeks, so that is not helpful, but hopefully I won't need to do any. Thanks for all the prayers and good wishes. I sure do feel frustrated. I pray every day that someone will come out with something soon to knock out the spores or this will be with me the rest of my life.

[justme]

Beth: I'm so glad you are feeling better. Hopefully, this is just a temporary set-back. Your last sentence was a poignant reminder of the anvil that is hanging over our heads, just waiting to drop. BTW, regarding a vaccine, the University of Hawaii has been asking for volunteers to test a vaccine that is being developed. The participants must be between 65-85 and, must never have had an episode of C.Diff. Unfortunately, if not for that last little caveat, I'd be first in line to apply.
Take care and good luck,
Anne

[notheidi]

Hey Beth,

I hope you feel better soon. The rollercoaster of c diff is so hard to take. It will be good to get some data from the stool analysis so you are not navigating in the dark.

Try not to project into the future about the possibility of having this forever, though that is always how it feels! Maybe try to think of other things that felt like they would be forever but then suddenly improved, and remind yourself that this can be like that too.

[beth22]

Thanks, Heidi. I try to stay positive, but it is hard when I watch everyone eat what I had no problems eating 7 years ago and not a day goes by without some digestive problem. I wonder if my intestines are so badly damaged that there is no going back to that time. Don't know. I try to do the best under the circumstances, but you are right. My husband's cousin, who is a year younger than I am, was diagnosed with colon cancer and had to have chemo and radiation and is scheduled for his surgery soon. He has to have part of the colon removed and wear one of those bags for about 2 years and most likely have more chemo and radiation after this surgery. So, I try to put things into perspective. It is still hard to accept though.

[Bobbie]

Talk soon. May tomorrow be a better day.

[NikaNik]

Hi, Beth! Just wanted to reach out and let you know I'm praying for you. For a negative c diff test and for your doctors to help you so that you can eat more. It seems like you've had so many tests. Have the doctors suggested anything else to you at this point? Hugs!

[beth22]

The test from Sunday was negative for c diff and parasites. Culture is still pending. The sample I took yesterday that was covered in M should be ready in a day or two I guess. I took that one to Quest.

I have to have my blood tests for pancreatic enzymes. Was sent up to lab yesterday, but the wait was really long and I was parked in a one hour zone and had already gone over the time. Will do those today or tomorrow as well as the tests for vitamin deficiencies. Last lipase test was high, so it is probably pancreatitis again. I will talk to the GI motility specialist about it at my next appointment to see if anything can be done or if there is anything I can take for symptoms if that is what it is.

[Lisa33]

The negative for c-diff and parasites is definitely a good start! Thank goodness! That must be somewhat of a relief for you. I know how frustrating this must be for you. Nothing like spending these summer days back and forth to labs and doctors. I will continue to pray for you that the doctor can do something to help with this reoccurring pancreatitis. Maybe there is at least something to alleviate the symptoms. Are you at least feeling any better today?

[beth22]

Yes, I did feel better today. In fact, now I am back to C. But, I was able to do a couple of errands, go see my mom and then drive with my husband for 2 hours in rush hour traffic to go down to my daughter's to help with something and then we went out to eat at Outback. Hopefully, the food will agree. Tomorrow will tell and I am going to get the blood tests for the pancreatic enzymes tomorrow as well. My appointment with the GI motility specialist got bumped up a week to the 21st, so I will discuss all of this with him. He did my upper endoscopy in April, so he would be a good one to talk to. The other GI is having Genova Diagnostics send me the stool test kit that will test for yeast and good flora as well. Maybe it will give some insight into all of it.

Thank you all for your good wishes and prayers. Sometimes when you are chronically ill, it feels so lonely. It's as if the rest of the world is living their lives and you feel like you are on the outside looking in and not able to participate. I've felt that way too long. Something has to get better soon!

[Lisa33]

I'm glad you felt better yesterday and hopefully the trend continues. Hopefully the GI can come up with something to imrove things for you. Nobody should have to live chronically ill. I will continue to send good thoughts and prayers your way. Stay positive and enjoy the good days!

[sevla]

Hi Beth, I am glad the test results came back negative. That's a good start for sure! It is also a food thing that you seem to be on top of things and will hopefully get more insights into the whole thing. I am so sorry this has been going on for so long for you. I can only imagine how lonely it sometimes gets. This might sound silly but one of the things I did when I got sick was to close down Facebook for a few days because I could not deal with seeing everyone else enjoying life and moving kn with their lives. I just felt sorry for myself all the time and angry. We are all told many times to make the best out of the "now" but it's hard. Try to stay positive and live in the now - the future is uncertain for everyone on this planet.

Know that we are all here for you. It will het better and new drugs are on their way soon!
Sending positive thoughts and hugs.

[notheidi]

C diff is it's own, unique kind of suffering. I totally hear you about how lonely it is to feel chronically ill!

Most people don't understand c diff and how bad it makes you feel and how it can affect your quality of life. Cancer is a terrible illness to have, and yet one small positive thing about it is I do think there's more social support and recognition--everybody knows to some extent what it means and has at least some kind of vague idea what people go through with it. There are cancer support groups, cancer walks, and large cancer advocacy organizations.

By comparison, c diff feels like "a dirty little secret." But definitely less of a secret than it used to be.

[beth22]

For cancer you can at least tell people about it - that you are having radiation or chemo, but in 2008 when I had my first FMT, my husband didn't want anyone to know and I felt very awkward talking about it anyway except on the site. I did tell one or two people, but it was not until it became more common that I felt I could share more. Obviously cancer is more serious than c diff in most cases, but I guess each illness has its own set of psychological issues attached to it. I'm just grateful that I can share here. I'm also thankful that the c diff tests were negative. Now if someone could only figure out why I have this discomfort and pain all the time that would be helpful. Also, why I still can't eat normally since 2008.