Hello fellow sufferers!

[gigirl]

Hi, my name is Sheila and I live in Texas. I am 51 y.o. nurse. I have had GI symptoms my entire life, mainly constipation. When I was about 17 I started having abd. pain, constipation, diarrhea, indigestion, etc. Had some testing and have always thought I had IBS. Symptoms worsened in 2007 after a divorce and I was diagnosed with Crohn's. I have been lucky in that with me really watching my diet I have only had to take steroids intermittently. My last flare has lasted about a month and I have lost weight, been very fatigued and taking entocort, flagyl, had sores in my mouth, got thrush, had to take meds for it, etc. All of this is to say that now I'm really frustrated and I guess just accepting that I have a chronic disease. I am weining off the entocort and am starting Pentasa today. My Dr. wants me to start on a very low dose and increase it gradually. Does anyone have thoughts about this? He says my disease is "stricturing Chrohn's of the terminal ileum". Any thoughts/advice will be appreciated. Also any thoughts on the Prometheus lab test for IBD?:eek2:

 

[scottsma]

welcome Sheila,sorry I can't help as I've got U.C.but this isa great forum and I know you will get lots of advice and good wishes very soon.Just wanted to say hallo.

 

[David]

Hi Sheila and welcome! I'm so glad you found your way here.

That you have stricturing Crohn's Disease of the terminal ileum AND fatigue tells me that you should get your vitamin B12 levels checked if you haven't recently. The terminal ileum is where B12 is absorbed and those with CD who have active disease there are commonly deficient and one of the common symptoms is fatigue.

There are quite a few Prometheus tests related to IBD. Do you know specifically which one you're wanting more info on?

All my best to you and I hope to see you around the community

 

[MendyVarner]

Hi Sheila! I had the Prometheus IBD sgi diagnostic test done earlier this year. It can tell the difference between Crohn's and UC. (I had all the usual test and was diagnosed with Mastocytic Enterocolitis first) Then the doctor decided on a pill cam which finally found my Crohn's.
So for me the Prometheus blood test was a God send! My doctor put me on Asacol HD which is the same type drug as Pentasa.
Feel free to ask questions, as they are all wonderful here to answer anything!

Good luck to you!!!!

 

[Angrybird]

Hello Sheila and :welcome: to the forum. There is a lot of information and support available here so I am glad you have decided to join us

I agree about getting your B12 checked and I hope the Pentesa gets you feeling better soon.

xx

 

[gigirl]

Thank you all, my B12 has been low in the past, it was ok 2 wks ago and I'm rechecking it next week. I'm now taking a multivitamin, vit D and eating yogurt daily. Do y'all take probiotics orally also? I was talking about the Prometheus serology for IBD, namely for the prognosis. My doctor says it's expensive and that we already have a diagnosis, based on lab, colonoscopy and capsule endoscopy. So he thinks It isn't necessary...thoughts anyone? I really like this forum. It's really nice to have you all for support and info! Have a great week!!

 

[David]

Let us know what the new B12 results are

If you have a diagnosis based on pathology results, colonoscopy and capsule endoscopy, I'd say that's pretty firm.

 

[MendyVarner]

The only reason I had it done, was because my diagnosis was so hard to come by. I do take an oral probiotic. It has seemed to help me greatly. I have tried several and they all seem to do me some good. I'm not sure what others would recommend. I'm currently taking the Phillips Colon health.

Good luck!

 

[Irishtarheel]

Welcome, Sheila! I'm new to posting here today (see "my story"), am your age, and have a nursing background (have to dust it off, went on to medical writing/marketing). I have Crohn's and was diagnosed 2001 exactly the same as you. I was allergic to sulfonamides/Pentasa, so was treated back then with Prednisone, and have since been on a course of Entocort, which worked very well, but is not a maintenance med. I struggle with fatigue issues and have had both iron and B12 IV courses now and then to bring them up. More recently, I am vigilant with my multivitamin, and my doc specified a B-12 sublingual (for better absorption) tab 1,000mg. daily. I also take Ultimate Omega (3) by Nordic; Blood Builder vegan supplement which doesn't bother my stomach to boost iron (started in January and will test results in May). I am now on Elaine Gottschall's SCD diet which has helped me tremendously. You may want to look into it. Different things work for each person. My B-12, thyroid, and my iron are checked by my regular internist every 6-12 months, if not by my GI specialist. There are definitely things about being a 51-year old female (hormones, etc.) that can play into the fatigue scenario and affect IBD symptoms. My doc says they are finally getting beyond tons of anecdotal information to studies that correlate hormone shifts with IBS and IBD symptoms. Make sure you have no sensitivities to sulfanomides before you begin Pentasa. Best wishes. Things will improve!

 

[gigirl]

Thanks for your reply. It was good to hear your story, and I appreciate the advice. I went today and bought probiotics and omega 3's. I looked for the book you mentioned. I don't know if I posted that I read "The Wheat Belly" yesterday. I'm struggling with the idea of giving up so much though!? I'm glad to hear that you are doing better. Thanks again for the info!