Crohn's Disease really sucks. Things do not get better

[demtenjeep]

http://www.gofundme.com/x4vujgs

[demtenjeep]

1. I am currently making an appointment to end my IRA

maybe that will come to almost a fourth which would be an awesome help

[Peregrine Took]

2. Have to go to an absolutely TOP gastroenterogist

the type they come from all over the world to study.

I have ulcerative colitits and my husband has Crohn's - we both have been in remission for years thanks to him.

[tblue37]

3. I have read that marijuana helps by relaxing the smooth muscles of the GI tract. nt

[closeupready]

4. Gawd. I hope you do get better, hon.

For a minor infection last year, I had to take an antibiotic that just DESTROYED my GI system - I stopped taking it and got better, but I feel for you, I honestly do. Your life essentially comes to a standstill and it is incredibly debilitating to have CD.

Hugs.

[demtenjeep]

12. yes it does

the pain is constant sometimes even worse

often I can't even get through a meal without running to the RR


Without the chemo I probably would be dead. I fear for what the future will bring because we started at every 8 weeks and are now down to every 4 weeks with a steroid dose before hand to help it last. Hopefully I live at least 20 more years and they can't go any lower than 4 weeks...what next?

[demtenjeep]

5. thanks guys

it is a very mean disease. Some days I just curl up with a heating pad and cry. Often times when I get that far with pain I end up in the ER getting shots of liquid pain meds but that costs usually 8 hours and 200 dollars

I live on 5 lortabs and 2 extended release Oxys a day and that is if the pain is normal.


I can not do the MJ because I still am trying to work. I can't afford to lose my job.

[demtenjeep]

6. taking care of these bill would essencially allow me to live

and have enough to pay my debt even when I can no longer work.

Thanks to hubby's awesome job and insurance I do not have to worry about insurance aside from co-pays and deductibles.

Some months it has to be a contest...do I pay a hospital bill or does a student loan get paid.

[demtenjeep]

7. I spent the last night debating on wether to go to the ER

or to stay.


I couldn't sleep, the pain was too great. I decided that if I could last though the night I would call the doc this morning if the pain was still there but sometime between 5 and 8 I got a little sleep and when I woke up, the pain wasn't as bad.

[sketchy]

8. Are you open to looking at diet?

If you have the time and energy to do some reading on this, it may be of help. It helped me.

http://www.breakingtheviciouscycle.info/

[user_name]

19. Highly recommended!

It helped my son and many others whom I've met.

[pnwmom]

20. It looks like the Fodmap diet, which is very helpful for a lot of people.

However, unless it is 100% gluten free, it shouldn't be recommended (as this book does) for people with Celiac. Even if reducing gluten can eliminate symptoms in Celiacs, the person can continue to have long term damage from continued exposure to any amount of gluten, including certain types of cancer and auto-immune diseases.

[RiverLover]

23. SCD eliminates all grains, all simple starches, etc

Its tough to follow, but there are many SCD recipe cookbooks & recipes on line. It can be done. Just need to stock up on almond & coconut flour, that's for sure.

[pnwmom]

24. Well, then it's harder than the Fodmap diet, but would certainly be fine for Celiacs. There is also

some research showing that some people have gluten-sensitive Crohn's disease, so the first thing might be to eliminate gluten and dairy from the diet, to see if that is enough.

[COLGATE4]

9. Have you looked into biologics?

My wife suffers from severe Chrons. She is able to function and is usually in remission by getting infusions of Remicade every two months. Other Chrons sufferers do very well with a once a month self injected dose of Humira. See a good Gastroenterologist who specializes in IBD.

[demtenjeep]

10. thanks. I do the Remicade (chemo) I am down to every 4 weeks started every 8 weeks at first

I have asked my GI doc about Humira but he is not sure it is for me.


I have to be very careful of what I take because I get pancreatitis often based on where the worst of the Chrons is and when it flares up (which is often) it makes things swell and blocks off that duct.

[sketchy]

11. kick n/t

[riderinthestorm]

13. Kick!

[demtenjeep]

14. so ...wow

a homophobe pizza place gets half a million in a day


a regular normal person hit with circumstance that really sucks..........

[closeupready]

15. In a fair society, someone with a chronic disease

wouldn't have to crowd source his or her health care, or expenses related to same. The disease would be cared for under the auspices of a single payer health care system.

In the US, however, it - predictably - isn't like that.

[marions ghost]

16. Yep

--America is a brutal place.

[demtenjeep]

17. yea

and it probably isn't going to work anyway so I have been reduced to shame and this

[mmonk]

31. Unfortunately.

[riderinthestorm]

18. I'm sorry. Your blanket project was such a hit here

try to keep the faith and hold on.

Another kick!

[demtenjeep]

21. I am very thankful for that

I guess because it was for kids



As I sit here with a heating pad on my side I am reflecting on how great that was and how much the kids loved it.

I have material stored at school for the next semester=probably around November. I just hope I am there to watch it happen.

[riderinthestorm]

22. I linked you to another funding request

http://www.democraticunderground.com/10026896990

Cat vet care requests are always a magnet so why not?

[demtenjeep]

25. aw thank you

I know this is probably a long shot but I have faith and frankly no where else to turn.


I've been called greedy and selfish and was told to just take bankruptcy. I don't know what else to do. My car is 10+ years, my home was built in 68 needs major repairs that we can't afford to do.

Daughter has been refused funding for her last year of college because someone decided she has taken too long (never mind her fiancé died during the middle of one of those years)

just seems like the walls are closing in and I'm not strong enough to keep them apart

Every day that I miss because of Chemo or illness I lose 268.00 a day three days in a single month...that is a house payment

[mainer]

26. Hope you know about this:

http://www.boston.com/business/innovation/blogs/inside-the-hive/2013/09/16/parasite-holds-promise-treating-crohn-disease-multiple-sclerosis/mUoVpso5kF05wOvIYYEQEK/blog.html

[demtenjeep]

27. I have made some changes

https://funds.gofundme.com/dashboard/mycrohns-sucks

I ended my IRA today and that was about half of what I needed.

I am more hopeful than the last two days.

[greatlaurel]

28. Kicked and Recommended

Good luck and hang in there. Crohn's is such a nasty disease and so painful. Like so many of the autoimmune diseases, the pain and damage do not show on the outside.

Take care.

[mmonk]

29. Best of luck. My youngest son has Crohn's.

We're in your corner.

[a kennedy]

30. my sister had that horrible, horrible disease, she died of melanoma, but to have crohns too......

[demtenjeep]

32. thanks for all your prayers

things always work out.

We had some great things happen and all the bills I was worried about except for one were taken care of.

I will be closing the account and paying it forward once I get that final bill taken care of.

Thank you again. You are all awewsome

[Ex Lurker]

33. One of my best friends had it

Best wishes.

[scarletlib]

34. Dear demtenjeep, i do not have Crohn's disease.

However, i am diabetic. The diet recommended to you down thread by Sketchy is very similar to the diet I am on. It is called LCHF (low carb/high fat). AKA the Atkins diet, Paleo diet etc. On this diet I control my 'sugar' completely and do not have to take any medication.

This diet seems to work for many medical conditions. And there is research if you will look online--google Crohn's Disease and LCHF and numerous links will appear. I also recommend the book "Grain Brain" by Dr. David Perlmutter. He discusses the effects of gluten in the body and the inflamation it can cause in the digestive system. Much more can be said but I hope this helps you get started.

Good luck to you.

[vanlassie]

35. If it was me, I would obtain human breastmilk, preferably fresh from a family member living in my

general environment. Otherwise from a milk bank. Yes I would.