Not so typical case of Crohn's

[jaclynnbaker]

Hello all... I am new here and have been browsing and reading posts a bit and have decided to share my story. What of it I know anyway, as alot of my health remains a mystery even to my DRs.
I am 27 yrs old and was diagnosed in February 08 with Crohn's Disease after experiencing nausea, vomitting, gas pains, pressure, bloating, and constipation. Since then it has been a rollercoaster ride of bad and worse. I suffer from a stricture in the small intestine area and a fistula connecting to my bladder which both cause chronic pain. I have dealt with blockages, abcesses, infections, along with normal flares over the past year or so.
I am currently at the University Hospital in my state for the 6th time since diagnosis as inpatient. I take Pentasa, Nexium, Prednizone, oxycodone, gas meds, stool softners and laxatives, as well as probiotic Crohn's meds (Digestive Advantage). The only thing that seems to bring relief is the oxy and the prednizone. I am fed up with Prednizone though and am looking desperately for a way out of it. I believe the game plan for this hospital stay as of now (day 13) is to taper off prednizone, start encort (have already started flagyl) and try to acheive remission to get off encort to go under the knife for the fistula, eventual goal is remicade. I have a few questions for all of you about my current state...hoping to find someone who is here or has been here where I am who can provide me with support, encouragement, and advice. Thank you so much for taking the time to read my story...

1 has anyone tried low fiber/low residue for stricture and to avoid blockage?? what other "diets" are recommended for this complication??
2 what do you do when the doctors will not provide you will adequite pain meds out of fear of "shutting down" the bowels??
3 how do you deal with the stress and anxiety of having this disease and people constantly asking how you are and you don't even know what to tell them??
4 how do you stay strong and support yourself mentally and physically when NO ONE in your life seems to understand or "get it"
5 should I be concerned about encort or remicaide
6 has anyone tried LDN and why does my GI say that would be the 5th step when he has never even heard of it??
7 what have you been told or discovered about eating things such as buffet food, leftovers reheated, spicy foods, sushi, and "gassy" foods??

Again, thank you for reading and I hope to hear from someone soon. God Bless!
Jaclyn Baker

 

[ErinDF]

Hey there Jacklyn,

So there is TONS of information on here about almost all of the questions you've asked.

Under the treatment tab you'll find tons of info on diets, pain meds, and LDN/entocort/remicaide (especially LDN).
Under the support tab there are lots of discussions about feeling isolated and misunderstood with this disease...unfortunately this is a quite common experience.
Under food and diet there are lots of threads about foods that do or do not bother people (and if I may summarize...its different for everyone. When I'm flaring one of the only things that doesn't bother me is McDonald's double cheeseburgers...you can imagine that this is not true for everyone).

Good luck...and feel free to ask any more specific questions you have as time goes on.

 

[Colt]

Your questions have all been answered here already and will all be discussed again and again. It's a lot to cover for one thread. We'll get to all of your questions, it may just take a little time and/or a little bit of reading other people's posts. I'd drum up a 10 page post for you but I've not been feeling well enough to do that lately and it's bed time.

I am curious though, what state would that be?

 

[D Bergy]

Welcome to the Forum.

Lots of info here, but it takes a while to find and see it all.

Food allergies are mostly individual, so it is not really possible to generalize on foods that bother everyone. It is my opinion that a diet high in carbs from grains and sugar are not going to help out anyone.

If your doctor has never heard of LDN he has no basis for his ranking. It is a bogus answer.

Some doctors feel that LDN is only appropriate for someone with moderate to mild Crohn's. I used to think that was true at first glance for probably the same reason they do. It is not a hard hitting drug, and would seem not suitable for a more severe case. Big guns for big game.

I have thought about that for a while, but I can not really justify that reasoning any more. It is more a matter of if you respond well to it. If it corrects the imbalance of the immune system I do not think the severity is the main concern. Like other drugs, it is more important if it works in your individual case. Since there is no way of knowing how any individual will respond to any given drug, your only way of knowing is to try it.

It may be beneficial not to start LDN when you are in a full blown flare. It does not work real fast, and there is no point in prolonging suffering waiting for it to kick in.

Possibly there is another reason that I am not aware of for this proposed use of LDN in mild to moderate cases. If there is, I have not heard of it. I would like to know the source of this directive.

As far as others understanding the disease, I do not expect them to. I cannot know what it is like to have Cancer, and I don't think it is possible for me to understand that without having it.

If asked, I say fine even when I was sick. If I could not get away with that answer, I would say, I have been better. I do not elaborate, because most people are asking out of politeness, and really do not want a detailed explanation of my bowel problems, and I really do not want to talk about it either.

I do not talk about it unless I have to. I come here for support from others who do understand because they have the same problem.

The SCD diet has had some success. I do not know much about it, but you will run across people using it here.


Dan