New Member Introduction (Wren):

[Wren]

Hello All! I thought I would just pop in and introduce myself. I have been a lurker here for about a year now and am so glad to have found this site. As you all know so very well, this ‘nuisance disease’ impacts our lives in many, sometimes quite serious, ways.

How I got here: In November 2008, a mammography showed a diffuse mass that had not been there 6 months prior. (I was having bi-yearly mammos to watch another unrelated spot, which has since spontaneously disappeared.) My GP referred me to a surgeon and upon agreement between pathologist, GP and surgeon, a surgical biopsy was recommended. I had the biopsy in January 2009. The biopsy result was a fibrous growth, non malignant. Given what I know now, I would have insisted on another less invasive test. (I believe the antibiotics and the shock of surgery were the triggers.)

Two weeks after the biopsy came the big D. I have never, ever in my now 60 years had any bowel problems before this. So I figured it was my body reacting to the stress of an ‘abnormal’ mammo report (You know what I am talking about, ladies!) and the surgical biopsy itself. But it never went away. I tried changing medications, yoga, some food eliminations, such as plain old sugar and the ‘ose’ sugars…nothing helped. The daily, often hourly, watery D or battery acid D continued. I was exhausted.

In August 2009, I gave up and finally told my GP who referred me to a gastro guy. Short version, he performed an endo and a colonoscopy in January 2010 and came back with a diagnosis of LC via biopsy with possible IBS involvement (since my body seems to overact to stress and injury and symptoms become even more exacerbated). I was put on Pentasa (2000mg) and prednisone (5mg but Gastro Guy told me I could be flexible with dosage, between 2.5 up to 10mg daily according to symptoms). I was reluctant to go on prednisone because my mother has been on it for 25 years (I know!) for polymyalgia rheumatica and her bones are crumbling. (But she’s 84 and still on her feet.) The Pentasa alone did nothing, so I did begin the 10mg prednisone after two weeks and this seemed to push me into remission. I was thrilled. That was easier that I thought it would be. Tah-Dah! (Yes, you may chuckle here.)

Apologies: When I found this board, I was still relatively symptom free and just wanted to learn more about the condition. I confess that all of the conversations revolving around diet and testing for intolerances as management seemed to me sort of ‘new agey’ and even a bit obsessive. For those thoughts and judgments, I now apologize.

On my last in gastro office visit in September, the effects of the prednisone were quite evident – the moon face, the acne, the weight gain, the thin skin and slow healing wounds (I’m a gardener. I am always scratched up or bitten by something out there.), and heat intolerance, which is a biggie since I live in Florida. I had gradually increased the pred to 10 mgs and this was barely keeping the D in check. Norman hadn’t been around for 6 months. GastroGuy told me to taper off the prednisone and stop it completely. So I did over the next three weeks. And then…

I relapsed. Big time. Even on the highest dose of the Pentasa (still at 2000mg daily, which Gastro Guy refuses to increase), I was back to square one. Actually, make that square zero since the D was even worse than when it first began a year before. I stopped taking the Pentasa as well since it wasn’t doing a thing and it is too expensive to take if it isn’t doing a job. After five days of explosive watery D, I called Gastro Guy’s office. Begged him to increase Pentasa dose or try something else. (We had already been through 5 other alternatives.) He just told me to go back on the Pentasa at the dose that wasn’t working and take the prednisone again.

Well, no way am I going back on prednisone unless I am at the point where I have to crawl on the floor to get to the bottle.. I did go back on the Pentasa….and I began to read the diet suggestions and member stories with an opened and receptive mind.

Gratitude: Thank you! Thank you, all! I have been GF and DF for three weeks now and I feel so much better, it is incredible. The D is manageable at two or three instances a day. My innards are very calm. No rumbles or gurgles and with very little discomfort usually. Yay!

So, that’s the short version on how I came to be here and finally to sign up to be a member. It’s a life-long journey, I now understand but it’s a journey I do not have to travel alone.

[tex]

Hi Wren,

Welcome to our internet family. It's great to see you posting, after lurking for so long. I'm sorry that you had to go through such an unpleasant treatment experience with your gastroenterologist, but I'm impressed and very glad that you've found your solution. I hope that your success at controlling this disease continues, and I see no reason why it shouldn't - you seem to be in good control of the situation.

Again, welcome aboard, and thank you so much for sharing your experiences and your inspiring success story. IMO, it probably won't be long before Norman comes calling, and then it will be time for a rousing celebration.

Hugs,
Tex

[Wren]

Tex,

Thanks for the warm welcome!

[sarkin]

Welcome, Wren, and congratulations on weaning off the pred, and on your success with diet. Sounds like you're heading in the right direction!

--Sara

[Gabby]

Welcome Wren!!! I love your name! Sounds like you are off to a good start. Look forward to hearing more from you.


Gabby

[Martha]

Dear Wren,

I'm so glad that you are beginning to find relief with a GF, DF diet. And after only 3 weeks!! That is impressive.

Love,
Martha

[Polly]

Hi Wren and

It's wonderful to meet you and to hear your story. I'm glad you decided to stop lurking...........it is always such a treat to meet new folks and to hear how they are managing their MC. I feel like I learn something from everyone here. And congrats on your success so far with diet! I wonder why your GI doc prescribed prednisone instead of starting with Entocort first.

Looking forward to more chats.

Hugs,

Polly

[Kari]

Hi Wren and as an "official" member of our PP family.

I'm so glad you took the step of writing your story and joining us, as your experience is sure to resonate with and help others here. Sorry you had to go the prednisone route before discovering a much gentler and permanent way of living with MC. I wish you success in your continued MC management, and look forward to your future posts.

Love,
Kari

P.S. I'm one of the many who is healing with diet alone, and can tell you that after 16 months, I'm soooo much better in every way. However, Norman is a very fickle character, so please don't get discouraged if he takes his time in showing up :). The main things I have always focused on are feeling better and having fewer bathroom trips.

[Lesley]

So glad for you that the solution was so simple. May the potty free days continue!

[MaggieRedwings]

Welcome Wren and being an avid birder I love our name and also the Wren family birds.

Thanks for joining the family and posting such a positive story that diet is what worked for you. We are far from new agey but have learned that the doctors seem to know little about our disease and we took it upon ourself to learn more and deal with it in a more positive and for some of us - myself included - diet wise only. I went the med route and no help there.

Please stick around and we love getting input from new and old members alike.

Maggie

[Gloria]

Hi Wren!

Thank you for the honest, uplifting story you've shared with us. You have probably helped inspire others who have been skeptical of the healing that is possible by changing the diet.

I hope your progress continues and that you continue to share your experiences with us.

Gloria

[Robin]

Hi Wren....Welcome!

Like you for many months I lurked around this message board. I found out after I joined that we don't have to be alone as we go threw this horror. Its also not in our heads! I seem to feel very safe when I am on here, like one big happy MC family! Everyone here will help you with any questions or concerns you might have and they do it from experience and from there heart!

I am very glad your here now. Also its great that you are doing great with your new changes in your diet! It really does work!

Stay Healthy
Robin

[Zizzle]

Welcome Wren!

LOL about this comment:

When I found this board, I was still relatively symptom free and just wanted to learn more about the condition. I confess that all of the conversations revolving around diet and testing for intolerances as management seemed to me sort of ‘new agey’ and even a bit obsessive. For those thoughts and judgments, I now apologize.

I can see how someone would get that impression, especially a newcomer, and especially if you're not feeling so bad at the time. Giving up gluten and dairy feels like nothing short of extreme, and possibly reckless and impossible, especially when you are literally addicted to them.

It takes insane amounts of willpower, often for months until you reach acceptance, but the benefits are nothing short of miraculous for most of us.

We just have to remember our health matters more than our food cravings.

Glad to meet you.

[Wren]

I am glad you found my tale of interest. I have read many of your stories over the past months and have found much encouragement within your words. I look forward to sharing and comparing with you in the times to come.

Thank you all for your welcoming words. I feel like I know most of you already and am very pleased and grateful that you are so kindly hospitable to new members.

I have to also thank those who have tried and recommend pork as a protein source. I took that advice and have been living on those wee thin chops with steamed/boiled/baked potatoes. I am slowly adding well cooked (well, mush really) vegetables and so far I can do squash and carrots and green beans. (No additives/preservatives)

I am not sure about spices yet. I may be reacting to rosemary (Noooooo...!) which I love on potato but when I add it, I seem to have problems. Too much oil, perhaps?

I love Dee's Kitchen and have already tried some of the recipes. Yum! I don't really have many 'can't live without' foods so I am not (yet) feeling deprived. Months down the road I may kill for an extra cheese pizza, but if I continue to feel this good on the GF/DF plan, I trust I will be able to resist.

[barbaranoela]

greetings from me 2-------this *door* is always open and so happy U Knocked--and entered~~~

it is amazing the knowledge that many peoples have to offer ---and for me it also was a *miracle* I am one of OLD BEES -- so I am well in control--
YUP---Dee has some amazing receipes also---


so much success on your road to recovery--

Barbara