Supplements that helped me

[caledon]

Here is my story:
I used to go to the bathroom 1 time a day.
Started having diarrhea overnight. Ending up going to the bathroom 2-4 times a day with urgency.
This went on for about 1 year as I hoped my body would heal itself and it never did.
Went to a doctor and got a colonoscopy. He said my entire lower intestine was inflamed except the bottom part (I read this is usually crohns colitis, but who really knows). I am prescribed Lialda 2x.
After the colonoscopy I am going 20x a day. I lose 20 pounds in about 1 months time.

I start taking these supplements:

• Udo's Super 8 Probotic - I read some forum post where a girl was sick and she took this along with high doses of Flagyl and Nancy's yogurt to cure herself.
• Vitamin D - I saw a study that this helps.
• Florestor Probiotic - I saw a study of people going into remission by taking 3 of these a day.
• Krill Oil - Everest brand (it is supposed to have the most).
• Centerium multivitamin - I do not know if these help, but I wanted to list everything I take.
• Vitamin C - I do not know if these help, but I wanted to list everything I take.
• Vitamin E - I do not know if these help, but I wanted to list everything I take.

I avoid these foods:

• milk
• Spicy Food

Cabbage may also help.

I now go to the bathroom 1-2 times a day without urgency. Unfortunately this means I did not achieve remission (it used to be 1 a day), but it is a huge improvement in my quality of life and I just wanted to write this here in case there is anyone else like me out there that this might help.

 

[Jennifer]

He said my entire lower intestine was inflamed except the bottom part (I read this is usually crohns colitis, but who really knows).

Hi caledon and welcome to the forum!

So you're still undiagnosed then? It could be Crohn's colitis or it could also be Ulcerative Colitis. With proper testing your GI should be able to tell the difference. Were biopsies taken during your scope? Have you had any other tests done? I'm glad that you are feeling better but I also hope you continue testing to get a concrete diagnosis.

 

[caledon]

Thanks for the reply Jennifer!

My GI told me that they really do not have a good way to tell 100% for sure. The biopsies were inconclusive. He also said that there are times when they think it is Ulcerative Colitis and take out the lower intestine only to find out that it is crohns disease.

I moved and have a new GI who also does not seem to care which one it is with the idea that the early treatment for the two are the same.

I will most likely choose to have a colonoscopy this year. Maybe they will see something that will allow for a more conclusive diagnosis.

Of course I am not a huge fan of doing a colonoscopy due to how sick I became after my first one.

 

[Jennifer]

It is possible to tell the difference (may take time but is possible). Also a GI saying that the treatment is the same, eh, that would bother me since the inflammation that Crohn's causes is deeper in the intestinal wall than Ulcertaive Colitis. So if you're given something like Mesalamine, that's topical, meaning it works on the surface, it works great for Ulcerative Colitis but not for Crohn's. http://www.crohnsforum.com/showthread.php?t=50253

To tell the difference between the two, there are many ways listed here:
http://www.crohnsforum.com/wiki/Crohns-Disease-vs-Ulcerative-Colitis
http://ibdcrohns.about.com/od/ulcerativecolitis/a/diffuccd.htm

Perhaps a different prep for your next scope may help (in addition to the probiotics you started taking). What prep did you use last time? If you don't remember the name, was it a large jug of nasty crap?

 

[purdueCrohns]

Mirolax/Gatorade prep for the win!

I would go to another doctor and get a second opinion. Crohn's and Colitis have SIMILAR treatments but they are no means the same. TNFs are not as effective on people with Colitis.

 

[Jennifer]

I actually haven't done the Mirolax/Gatorade prep but heard a lot of people recommend it. Best prep I have done though is Suprep.

 

[purdueCrohns]

Just stay away from Fleet. I am pretty sure Fleet is 100% natural alkaline battery juice

 

[caledon]

I must have crohns. I would swear Lialda does nothing for me what so ever. I will check out those links.

I feel like it was Mirolax/Gatorade and ducolax. All I really remember was the gatorade and ducolax.

It made me so sick. Going to the bathroom 20x a day was life changingly bad. I really am afraid to get another colonoscopy.

I will check out those links. Thanks for posting them.

I wonder what really makes for a good doctor? How can you tell that one is better than another?

I read one of the preps can sometimes cause kidney failure. Scary stuff!

 

[purdueCrohns]

The kidney failure from prep is only for people that don't drink enough water. The reason you do the gatorade mix is because it makes you drink a lot of fluid to go with the laxative.

It is hard to find a good doctor... it really is. You want to find a doc that is a research-oriented doctor. They stay on top of the latest treatments and findings. If you're in the US, I may be able to help you find one.

 

[Jennifer]

A good doctor will spend time with you and answer any questions you have. Writing down a list of your questions and concerns definitely helps so you don't forget anything. Also bringing someone with you to your appointments helps as they can also ask questions you may have forgotten or didn't think to ask.

A good doctor will also give you options and let you decide what sort of treatment plan you'd like to try. Some doctors will call you or email you to conduct business that way without having to wait for an appointment (I leave mine a message and they call me back in a reasonable amount of time, at most I've waited 3 days but it was never urgent). My doctor would also call me personally right away if my blood work came back bad and let me know what I need to do such as stopping a medication etc.

You should feel comfortable with your doctor, as in they will have a good or at least decent bedside manner. Its also important for them to be knowledgeable yet often times that also means that you need to do research as well to make sure that they are looking out for your best interests. If they suggest a certain medication or another form of treatment ask why that one and not X medication or X treatment?