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jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/20/2009 1:35 PM (GMT -7)   
This is gonna be a long one I'm afraid. I feel very frustrated right now. I need advice on my condition and if I need a new doc.
I live in a small southern town and have already been "blown off' by 2 GI docs who told me I had IBS. Finally, I went to a larger town to a major medical center and got diagnosed with colitis they think is associated with diverticular disease. They put me on colazal and honestly, I have never felt like I am in remission from this. They added rectal meds and those work pretty good when I use them. I am so tired at night that I often fall asleep before I put them in or I wake up with them still in my hand. Fatigue has been awful. Also this summer, I had these splits in my rectal area that went away when I started using cortifoam again. At this time, I had fever and sores in my mouth. My PCP did a blood test from prometheus and it was positive for crohn's. Will they change my treatment plan if the docs agree that I have crohn's? What other testing would they need to do? I just want to feel better and find a doctor who will not just blow me off. Oh, the doc at the major medical center, told me to find a local GI. He is better guarded than the pope and only sees people who are dying I guess. I never thought it would be this hard to find a good GI doc.  I think I have crohn's but I guess what I think doesn't matter. BTW, I am also work in healthcare and have a lot of schooling on pathology. I don't think doctors like it when their patients are well read on these diseases. Thanks for listening! Any advice is greatly appreciated.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 228
   Posted 10/20/2009 1:58 PM (GMT -7)   
What a sad story.  I totally empathize with you because I had the exact same symptoms prior to my surgery.  The only thing I can offer is for you to continue to look for a good GI.  I will watch for other replies.  Good luck.

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 10/20/2009 2:08 PM (GMT -7)   
That's rough. Definitely look around for a decent GI doc in your area. Maybe ask the doc at the medical center if he knows anyone who's good (my original GI doc moved and he gave me the name of another GI who he liked), a lot of docs in the same line know who their good peers are.

about the fatigue, has any of your bloodwork come up with low iron/hemoglobin/B12/etc?
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/20/2009 3:00 PM (GMT -7)   
My hemoglobin is good. I'll have to ask them about the B12. Thanks for the reply. I called my local practice and they have to get the doctor's ok for me to see another GI there. I saw one who was so nasty and said I had IBS...
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/20/2009 3:24 PM (GMT -7)   
The fatigue can easily be due to gut inflammation by itself, however, vitamin D deficiency or B12 deficiency, B6 deficiency can cause fatigue as well. I don't know where your scleroderma is localized, but you should be aware that scleroderma can cause very slow peristalsis and that causes SIBO (Small Intestinal Bacterial Overgrowth) and that causes many symptoms similar to CD. Have any of your GI's done any checks on motility or asked about scleroderma?

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/20/2009 3:44 PM (GMT -7)   
Heck no, they have not asked about the scleroderma even though I have told them about it. I have heard that scleroderma can cause problems in the intestines. I do take probiotics. Do people with IBD still have deficiencies if they take supplements? I need to put that in my bio as I do take Vitamin D and a vitaball vitamin every day. I figure the vitaballs can absorb through the mouth and they do not upset my stomach.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/20/2009 10:11 PM (GMT -7)   
The vitamin situation depends on how active your inflammation is and where it is. If it is in the small intestine, several vitamins and minerals which are absorbed there can be deficient despite supplements. Vitaballs is new to me... If it is absorbed in the mouth, it should avoid some of the problems of poor absorption, but I don't see it working for the non-water soluble vitamins like A, D, E and K - all of which are normally absorbed in the SI. I have heard of so-called "nanotech" vitamins which are supposed to be absorbed through the mucosa, but I am not sure that they are not just ordinary emulsions which are only absorbed along with whatever they are emulsified in. For more about scleroderma and SIBO, see: http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/21/2009 7:06 AM (GMT -7)   
Thanks Keeper. Do you also have scleroderma with bacterial overgrowth? How do you handle it? Mine is supposed to be just in the skin, it is called morphea to be correct. Have you ever heard of it. My blood tests are negative for systemic scleroderma.
Good point about the fat soluble vitamins though! I hadn't really thought about that. Regular vitamins make me feel like throwing up and they make me bloat up too. Yuck!
What is funny is that the less I eat, the better I feel. I think it gives my colon a rest. I also found that not eating much at night worked better for me as well. That isn't good nutritionally though.
Thanks for the info!
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/21/2009 10:21 PM (GMT -7)   
No scleroderma here, just occasional SIBO. What you say about not eating and feeling better matches the SIBO idea. I found that fasting for a day made me feel much better. My thought about it is that it lets the SI clear out the bacterial overgrowth by passing only fluids through. That and probiotics seems to help me when I am feeling brain fogged and gassy and tired. I am on the SCD plan and I have little to complain about mostly, it is only rarely that I get problems. I had the idea when I noticed that I started feeling better when I was doing a colonoscopy prep once a while back.

It's good to hear that you don't have scleroderma systemically. You may be able to manage it with a bit of luck and good judgment.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/22/2009 6:26 AM (GMT -7)   
Wow, Keeper, I think you hit the nail on the head for me. Thanks so much.
I felt better right after my colonoscpy too and sometimes after I get d, the next day, I feel better. I have stepped up my probiotics and also started drinking kefir which seems to help me. I have found that I can't fall back on the probiotics. Since I also have diverticulitis, too much fiber can give me a fit as well. Perhaps with the extra probiotics things will get better. Thanks so much again!
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/22/2009 9:11 AM (GMT -7)   
They might change your meds, if you do indeed have Crohn's. Colazal tends to be targeted at ulcerative colitis, not Crohn's.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/22/2009 12:05 PM (GMT -7)   
Thanks, I was wondering about that. It has helped somewhat but not toally. I know this b/c I no longer have joint pain that had been plaguing me for a few years. I stepped up my probiotics and have an apt to see a new GI next week as a matter of fact. You know, truthfully, I think people on this board know as much, if not more than some of the people who are supposed to treat us. Sometimes you have to just learn about your own body by trial and error. Problem is, a lot of doctors do not respect patient's feelings and intuition. Thanks for the response njmom!
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 

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