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04-06-2014, 03:27 PM   #1
Ali29
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Advice Please

Hi,

I am needing some advice. So far the Pentasa has only made a 50% difference in the D (3-4 good days a week) so the GI is adding Lotronex. He is also running more blood tests. I'm frustrated as the nausea is still here so I'm on Phenergan 1-2 times a day - sometimes the nausea starts within an hour of waking and if not then - definitely within an hour of eating. The GI has not been able to determine what is causing the Acid Bile Malabsorbtion - this I think may be the cause of the nausea? Pain usually starts after I have eaten but not always. I asked him his thoughts on the SCD, etc diets which he really didn't have any comment. My Crohn's is in the Upper GI.

Seems like we are just covering up the symptoms rather than overcoming them. The GI has not talked about trying any of the other meds (which he knows I'm afraid of) but I have no quality of life. I'm very lucky in that my family is near and comes to visit.

Does anyone have any advice?
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
04-08-2014, 11:34 AM   #2
Ali29
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Thanks to all who read my story. My GI called last night and is also stumped and thinks there are more than just the Crohn's going on. He said he has the text books out as my case is very complex - we have even tried Migraine meds to see if I'm having stomach migraines which is rare but since I have had ocular migraines in the past - it was worth a try (didn't help). He is going to run more blood tests - the pain is just getting so bad and some of my stools have been black. My inflammation markers are low so that is good but makes this all the more complex.

I just feel so crushed right now. I just want to get well or at least feel a little better and be able to get out of the house. My FLMA runs out at the end of this month and I am so far from being able to go back to work, unless we have a miracle diagnosis and I improve dramatically. I've worked so hard to make an AVP position and I know I can no longer have the stress that comes with managing.

This forum has helped me not feel so isolated - thank goodness we have this. Sometimes the path we had planned for ourself is not the path God has for me. I'm blessed with a beautiful family and I want to be around in good health to enjoy my kids/grandchildren.

Thank you for listening!!
04-08-2014, 01:14 PM   #3
Tuff
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Hi Ali. I'm sorry you're having such a hard time. It can be a difficult disease to treat. I noticed that you belong to the SCD forum, are you still following that diet? Personally, I could not eat like that at all, many people can't. If I eat raw carrots, they would come out undigested. My GI recommended a low residue diet. I'm currently constipated, which is great. It's worth a try, and it won't hurt. I hope you see some improvement soon, hang in there.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
04-08-2014, 02:19 PM   #4
shawnagio
 
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Location: Ohio

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I too wanted to try diet because so frustrated and miserable after even a bite of food/ and my GI is doing a blood test for all food alergerys and a Hydrogen Breath test to see if lactose and or bad bacteria. Worth looking into
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Shawna
Entocort
folic aid
mercaptopurine
asacol
nexium
align
remicade IV

DIAGNOSED
Crohns/ulcertative colitis/gasteritist and waiting on more....
04-08-2014, 02:50 PM   #5
Ali29
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I joined the Diets group just to learn. At this point, I haven't tried any of the diets, just trying to be very careful in what I eat. I haven't tried the Hydrogen Breath Test - I'll ask my GI about it - at this point, I'll try any test.

Thanks!
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