Feel totally lost and helpless

Welcome to the forum!! This is a pretty great forum; lots of support here. I'm sorry you don't get that from the people around you. Some here have had that as well.

I've had c. diff 8 times - not fun! Have you heard about fecal matter transplants (FMT)? I had one last year because my c diff because resistant to all antibiotics. It seriously worked miracles.

What biologics have you tried?

And I also don't believe CD is all I have. I really am wondering if I've developed another autoimmune, but every doctor I've seen had just shut it down. My feet and ankles are EXTREMELY swollen, I'm so tired all the time that I could literally sleep all day (and I'm the kind of girl who used to be up at the crack of dawn ready to go the whole day), I'm very sensitive to sunlight, and just ALWAYS in pain. I don't know what else to do to be taken seriously but I wonder about lupus or some other condition. Has anyone has this problem? I'm really hoping once I see somone new that all this mess will be fixed :/

First off - BIG HUGS!! You are not alone.

I have all of the same issues. Joint swelling, light sensitivity, constant pain - everywhere, etc. These are all secondary CD issues. I have not had any luck with any meds/biologics. I have been researching marijuana, but not legal in Texas - yet, to help with the inflammation thru out my body. Unfortunately, I am having the rest of my colon removed on 11/11, the scare tissue from years of inflammation is closing off my colon and no way of fixing it. So I recommend trying to get control of it sooner rather than later. The transplant sounds like a great option for you. Keep trying doctors until you find a good fit - very important. The Crohn's/Colitis foundation is a good resource for doctors.

My family wont even admit I have an illness. Thankful my husband and his family are great, but I understand your frustrations. I was told once "a bad relationship is a bad relationship no matter who it is with and you need to get rid of bad relationships" it was a tough lesson, but so worth it in the long run. You're young and its hard. Try to find s support system and tell those who don't support you to "Suck it"

Welcome to HW. You will definitely (!) get alot of support here.
Your story is so unfortunate. So sad that even your own family will not give you the love and support that you deserve from them.

I have no experience with C-diff, so will defer to others here regarding that. As far as your treatment for CD, I really think you need to just keep trying. When you make your move, hopefully you'll be referred to a new GI that will meet things more head on. It might be worth at least trying Humira. If not, there are many new treatments on the horizon. One to consider might be QUbiologics. Also, there might be trials going on in the area you are moving to.

As difficult as it might be, you really need to continue pushing for the best care possible. You might even consider a trip to the Cleveland Clinic, or the Mayo clinic.

Good luck, I'm sure things will get better soon. Try to stay positive, as difficult as it might be sometimes. Keep posting updates. You'll get plenty of good advice here.

I'm sorry you have to wait a couple of weeks before moving. Good luck to you and I hope your doctors listen to you better in Mass.

You have come to the right place for support. It is unfortunate that the people in our lives we are closest with sometimes show the least compassion and understanding. My mother-in-law advised my husband not to marry me because I would probably be a burden to him since I have Crohn's disease. I'm glad that he fell far from the tree, he has never made me feel like a burden even though he has picked up my slack many times when I'm not well. I hope you can find some people that will be more supportive and some relief from this dreaded disease.

Hi I'm new here. I'm also looking for support. I was recently diagnosed in April 2015. Since then I've spent 5 weeks in hospital. I've had cdiff twice, analysis fissure with severe rectal bleeding, abscesses hemeriod (internal and external),,severe D, dehydration, severe low potassium, vertigo. I've had 3 surgeries. Now I'm dealing with major constipation. Possibly due to stricture. My family thinks I'm just lazy and complaining when actually I'm tired and hurting.

I'm so sorry you feel this way. It is a very isolating illness.

Wow, you've already been on and off Entyvo? How long were you on it?

Until you get rid of the CDiff, you'll continue to feel poorly, unfortunately. I also think you need to push for FMT! I hope you are able to finally find a good doctor when you move to Mass!! Hang in there

Sorry Bucko - not much help in the constipation depatment since mine always went to the other extreme, but what about some natural remedies? Prune/plum/apple juice, trrying to get more healthy fiber. Lots of fruits and veggies, or a teaspoon of melted coconut oil before bed with toilet sits?