Tips for living with colitis?

[wmacbride]

I was wondering if anyone out there has colitis and might be willing to share a few tips.

 

I was diagnosed a few years ago. It was a horrible time for a lot of reasons. t the space of about four months, we were told my husband was being posted to a new base so we had to move. we bought our first home, our oldest developed severe depression and had to be hospitalized and my mom found out she had terminal cancer.

 

All in all, a pretty crappy four months. I started getting sick, and thought it was just the stress. I saw a few doctors who thought the same thing. I just kept getting worse and worse, and then I developed a high fever and my husband took me to the ER. they thought I had a C. dificille infection, and I was put in isolation ( boy, was that ever fun...not! )

 

I was eventually diagnosed with colitis, and prescribed salofalk along with prednisone for a short period which seemed to get it under control.

 

For the most part, I'd been feeling good, but not so much now. For some reason, even the sight of food makes me feel ill, and a lot of the time, I feel sick to my stomach, right out of the blue and for no reason ( like in the line hen we were out shopping). I've tried ginger, gravol, and even a scopolamine patch, but nothing helps. I've lost about 70 pounds since January, I'm always cold ( it's about 28 degrees Celsius here today, and I'm under a blanket) and - sorry if this is gross- I get these horrible cold night sweats that actually leave me feeling dehydrated and faint.

 

My doctor has booked some testing for me, as she said some people with colitis are at an elevated risk for some forms of cancer, and she wants to rule that out.

 

In the mean time, does anyone out there have tips for living with colitis? I'm sick ( literally) of feeling this way.

[healing light]

I would make sure you rule out cancer in light of the night sweats and rapid weight loss.

 

However, I would look around for a qualified acupuncturist in your area (make sure they got a degree from a 4-year institution). I know several practitioners who use herbs to treat not only their own crohn's disease but also ulcerative colitis pretty successfully. Classical Pearls has some great herbal formulas for chronic inflammatory conditions, but any acupuncturist you go to that does herbs will probably have a preferred brand they use in their office.

 

In the meantime, look into the AIP diet. That's the Auto Immune Protocol diet. It's an anti-inflammatory diet and some people have really good success with a variety of autoimmune issues on that diet, everything from bowel issues to reversal and management of MS. I would also research the GAPS diet, which is specifically targeted for people who suffer from bowel issues and leaky gut.

 

I do not believe you will be able to get on top of your colitis without significantly modifying your diet. Consider consuming lots of dark leafy greens, collagen, and bone broths regularly to start. If you eat meat and dairy, consider changing over to organic grassfed meat and milk products. You need to reduce your exposure to foods that provoke inflammatory responses. Avoiding additives like carrageenan (also called agar agar) can be very helpful for some people with bowel issues, too.

 

I would start a food journal so you can track down any suspected offenders that make your symptoms flare. Good luck with everything!

[wmacbride]

Thanks for all the advice. You shared a lot of good tips.

 

Right now, I'm not eating that much, as even looking at food makes me feel sick. I try to make what I do eat count, so I'm eating a lot of vegetables, clear soups, etc. My children/spouse and I all have immune systems issues of one form or another, so it's always a concern.

[amaysngrace]

I don't have much to offer except for saying that I'm sorry you're feeling so terribly and have been struggling for so long.

 

I hope that whatever is keeping you unwell is discovered soon so that you can return to good health. Sometimes not knowing what is wrong is more agonizing than the actual diagnosis and my thoughts and prayers are with you that they may get to the bottom of this so that you can soon feel better XO

[Gaeta]

My mother has been diagnosed with colitis years ago. I am surprised you are eating vegetable and soup, that's what makes my mother have crisis. With the years she was able to identify the food that made her sick so now she only need to take her meds when she feels bad. There is a collection of vegetables she cannot eat or she'll be in pain for hours. She doesn't eat broccoli, colliflower, cabbage, and all vegetables related to these vegetables.

[divegrl]

I'm so sorry you're going thru this. I was diagnosed with Ulcerative Colitis at the age of 21, I'm now 36. At the beginning I was prescribed prednisone, asacol, colozal, pentasa, entocort, humira, entocort, remicade. None of the prescription medication worked and it was to the point where I was considering surgery.

 

At that point, I ran across Elaine Gotschal's book, "breaking the vicious cylce". I used the SCD protocol to heal my gut and put my symptoms into remission for 15 years! Today, there are so many different nutrition protocols, I would do a bit of research, and find a plan that resonates with you. Also, all the guidelines are widely available for free on the internet.

 

I would highly recommend making your own bone broth. (I only ate bone for a whole week as my gut was so destroyed.) And then I slowly started adding in other foods....

 

Hugs my friend. I hope you feel better soon.