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Eviltweety88
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 9/30/2008 7:42 PM (GMT -7)   
I've been dealing with some sort of intestinal problem for over 20 years.  My basic symptoms during flare up are low grade fever, pain, intestinal swelling *SEVERE*, bloating, just generally feel horrible, NO ENERGY AT ALL, even my throat seems to swell.  It does seem to be stress or allergy related.  If I do have any movement during an episode (lasting anywhere from 1-3 weeks at a time 2-3 times a year), it's either pencil diameter (due I'm sure to swelling) or very loose.  Sometimes I have the symptoms above and live in the bathroom with sweating and cramping so bad that I literally sweat through all my clothes. No blood though...
I've gone to over 10 Dr's and no one has been able to do a Colonoscopy on me (5 attempts to date!) due to the swelling and unable to clear my intestines.  Same w/barium testing. Because they can't do these tests, none of the Dr's have been willing to try ANY medication with me to help at all.
 My appendix burst in 00' (misdiagnosed as gas smhair gangrene, peritonitis etc), and had ITP in 03'. I'm deathly allergic to Sulfa based antibiotics and any steroid *Prednazone had me in the hospital longer than the ITP*.  I'm at my wits end.  I'm in Northwest OH (Toledo area).  ANY HELP OR REFERENCES would be a GODSEND..I really don't know what to do other than take a week off every few months and curl up in the fetal position.  Please help if you can...
 
signed, Maybe Crohn's, or????

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 9/30/2008 8:07 PM (GMT -7)   

This sounds truly miserable. I understand doctors are reluctant to treat when they're not sure what their treating, but there's an old treatment for Crohn's disease that might be worth trying since the risk of side effects is very low. It's called enteral nutrition, which refers to special liquid diets used instead of other food and beverages, usually for 2 to 8 weeks to reduce inflammation and induce remission. There are a bunch of different formulas (some easily available, e.g. Ensure and Ensure Plus), and they all seem to work about the same, but some people will respond to one type of formula and not another (not predictable in advance, it’s trial and error). Doesn't work for everyone, but generally you will see improvement within 10 days if you are going to respond, so you don't have to stick it out too long if it's not working. The formulas provide all the nutrients you need in a day as long as you drink enough of the formula (say, 1800 calories per day, or more if necessary depending on your size and activity level). If you drink different types of liquids or try to eat regular food along with it, you are less likely to reach remission.

US gastroenterologists don't tend to prescribe this treatment because they think it's too hard for people to give up regular food for a few weeks, but it's a first-line treatment in Japan, and is used in Europe and Canada much more frequently than in the United States. Anyway, just a thought, since it sounds like you really need some relief from the symptoms.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 9/30/2008 8:09 PM (GMT -7)   
Forgot to mention, if you want to know a little more, there's a description of enteral nutrition in a good book by Dr. Fred Saibil called Crohn's Disease and Ulcerative Colitis: Everything You Need to Know (second edition, 2003).

Eviltweety88
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 9/30/2008 9:27 PM (GMT -7)   
Thanks so much...I've found that liquid does seem to help when I have a flare up. I'll look into it as a stop gap until a Dr finally comes through. Where's House when you need him!? Thanks again!!

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/30/2008 10:59 PM (GMT -7)   
Do you take supplements? With all that inflammation, you are probably not absorbing nutrients properly. Deficiencies of B12, Folic acid, iron and zinc are common and can cause more problems. You should take a good multivitamin - look for one that contains no iron - you will need to supplement that separately (iron interferes with absorption of zinc and copper and actually destroys vitamin E). Extra vitamin E and C are helpful in controlling inflammation-related reactions. Vitamin C should be taken in the Calcium form (usually called ester C) since the plain ascorbic acid is poorly absorbed and a bit irritating to the digestive tract. Iron should be taken at a different meal from the vitamin and you should try a more absorbable form of iron like ferrous citrate or a mixed ferrous fumarate/maleate/gluconate. Iron can be irritating to an inflamed gut, so you may have to watch out for a bad reaction - which is more common when taking ferrous sulphate. You should also take a probiotic - but you should avoid ones that contain FOS (fructo oligosaccherides). Look for one that contains Lactobacillus casei. It has been shown to help Crohn's disease in a couple of ways. You will likely have to look for a probiotic that contains several Lactobacillus types to find L. casei. It has been identified as a potential therapeutic agent for treating Crohn's. It may take several days to see the effect of taking a probiotic. A good one that is available online is Jarrow Formulas Jarro-Dophilus EPS.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/30/2008 11:52 PM (GMT -7)   
Have they tried using a pediatric scope on you...they can also do upper GI barriums and such as well...along with stool and blood samples.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/1/2008 3:51 AM (GMT -7)   
Have they mentioned a pill cam gee I cain't understand why they aren't doing something if your narrowed so much they cain't get the scope threw. I would put some pressure on the DR's to get some kind of treatment going .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/1/2008 3:59 AM (GMT -7)   
Also wanted to mention CT scans can give your Dr' lots of info hope you find a better DR. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 10/1/2008 4:53 AM (GMT -7)   
Since you are in Ohio, have you been to the Cleveland Clinic? With it being a teaching hospital, they can usually get through the unusual...I was diagnosed 20+ years ago in Connecticut, but have been treated at the Cleveland Clinic for the last 11 years.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/1/2008 6:33 AM (GMT -7)   
I just had a newer test called a CT Enterography. Its supposed to provide a better view of the small bowel. Sure sounds like Crohns. I think Ohio's idea is a good one too, maybe you can get in there and get a pillcam or something. Sure hope you find some relief soon.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Eviltweety88
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 10/1/2008 8:12 AM (GMT -7)   
I've had several upper GI tests...eberything seems "fine". I suffered from appendecitis (sp?) For 13yrs before it burst and was never diagnosed because I just didn't present "normally". The biggest problem with lower testing; if I'm having a flareup, it's almost impossible to clear my GI tract enough for the test. I've asked about the pill cam, but have had no luck. I'm going to try some of the diet modifications and probiotics for now and see how things go. I can't tell you all how much I really appreciate your help!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 10/1/2008 10:10 AM (GMT -7)   
Eviltweety88, are your docs specialists in Crohn's/UC? It sounds like your symptoms warrent a little more attention on your docs behalf...I hope you find relief, soon!

Eviltweety88
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 10/2/2008 6:57 PM (GMT -7)   
Supposed to be, but it's been a roll of the dice.  Go to a different Dr, want the same tests, freak when they can't get them done.  I sometimes feel like I just am spinning my wheels with any Dr. 

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/2/2008 9:52 PM (GMT -7)   
It looks like they are relying on a biopsy (which they can't get) to make a diagnosis. CT enterography and pill cams (which they may not want to use if it so hard to get a scope through) will not give them the biopsy they seem to want. There are blood tests which are not a true diagnosis for Crohn's, but may be enough to persuade them to treat you. Tell them you want the blood tests and treatment on the basis of a tentative diagnosis. You would think that the doctors could figure this kind of thing out themselves - but that might involve telling the patient what they were doing and what the problems were..........
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