aslo
03-08-2005, 06:04 PM
Last year I developed what seemed like a slight colitis, treated it with diet, eliminated most carbs, sugar etc. Doctor prescribed Pentasa, which increased the bowel movements. Days later, developed pain near shoulder blade, numbness down left arm, left thigh neuropathy, burning feet. All blood work o.k.Discontinued medication.Developed panic and depression.
Scalene muscles in neck seem swollen. Had three weeks of cluster migraines, left side, puffly lower eyelid.
Intestines sore, one stool a day, soft and mucous.
Tested blood positive for Chrons, somewhat positive for Celiac. Gastro and colonoscopy show nothing.
Anyone with similar symptoms?
Cannot determine if the cause of the neuropathy is the intestines, whether I have an entrapment shoulder neck, and cannot quite improve the intestines.
abdomen is sore to the touch on the left side from the solar plexus down an inch or two.
Feel bad constantly with one or the other, I want my life back.
All testing so far, negative. Dreading future testing.
Any ideas?
Scalene muscles in neck seem swollen. Had three weeks of cluster migraines, left side, puffly lower eyelid.
Intestines sore, one stool a day, soft and mucous.
Tested blood positive for Chrons, somewhat positive for Celiac. Gastro and colonoscopy show nothing.
Anyone with similar symptoms?
Cannot determine if the cause of the neuropathy is the intestines, whether I have an entrapment shoulder neck, and cannot quite improve the intestines.
abdomen is sore to the touch on the left side from the solar plexus down an inch or two.
Feel bad constantly with one or the other, I want my life back.
All testing so far, negative. Dreading future testing.
Any ideas?
Sponsor
Rosnor
03-10-2005, 12:26 PM
Hi aslo, when you say 'blood tested positive for Crohns', do you mean an ESR reading? This shows the level of inflammation in your body, it can be anywhere, not just in the intestines. If you have a high level, together with a barium meal showing inflammation, they usually call it Crohns, or Ulcerative Colitis, which is in the large bowel, or colon. Te get a good look in the small intestine, you need a barium meal. Just wondering if you had one? Also, how did they test for celiac? If you tested positive/ish for that, you need to avoid all gluten containing foods. Are you seeing a nutritionist?
Sorry to fire all these questions at you. I've been diagnosed with Crohns, and have had all these tests. Good luck.
Sorry to fire all these questions at you. I've been diagnosed with Crohns, and have had all these tests. Good luck.
aslo
03-10-2005, 05:08 PM
Dont know what an esr is. I believe the blood test was an aca or something like that. On the celiac, one of the antibody blood tests was 20.
gastro scope and colonoscopy negative on everything.
Didnt do the small bowel follow through yet. Panic and depression slowing me down on that. I heard it can take hours. Its hard to relax and do all this nasty testing at the same time.
Went 95% gluten free on my own, doesnt seem to matter. Eliminated dairy for awhile, no difference. Very little carbs, no difference.
Im 50 and usually i ate a sensible diet and had no problems. Now no matter what I eat, doesnt seem to agree with me, and I dont know whats related to what as far as the tingling, muscle twitches etc. Taking sublingual b12, folic acid, calcium e, etc.
Thanks
gastro scope and colonoscopy negative on everything.
Didnt do the small bowel follow through yet. Panic and depression slowing me down on that. I heard it can take hours. Its hard to relax and do all this nasty testing at the same time.
Went 95% gluten free on my own, doesnt seem to matter. Eliminated dairy for awhile, no difference. Very little carbs, no difference.
Im 50 and usually i ate a sensible diet and had no problems. Now no matter what I eat, doesnt seem to agree with me, and I dont know whats related to what as far as the tingling, muscle twitches etc. Taking sublingual b12, folic acid, calcium e, etc.
Thanks
Rosnor
03-11-2005, 05:28 PM
I had all these tests done too, and it was only the barium meal follow through that showed anything. Inflammation in 2/3rds of the small intestine. Wheat aggrevates it to an extent, but giving it up doesn't seem to help. When I'm bad, nothing agrees with me. But foods that are hard to digest make it a lot worse. Coffee aggravates the inflammation definately. I've been taking turmeric capsules, which are a natural anti-inflammatory, cat's claw which is too, and iron, as I'm anaemic, although I have to be ultra careful with that. The twitching can be down to low magnessium, and if you take calcium it can upset your magnessium levels. I used to get a twitchy eye everytime I took calcium tablets.
I honestly think you should go back and get the test done. I didn't find it too bad, even though I had to have it twice. The first barium went through so quick, that I had to have another one. You get to lie down, and they don't have to stick anything up you on this one. Then you'll know if there's inflammation higher up or not.
Another thing you could try, is to come off all your supplements for a week, and so how you feel then. I did this last year whilst on holiday (just forgot to take them). I was surprised at how much better I felt! I think sometimes our livers struggle, and lots of supplements without a break can be too much hard work.
BTW, pentassa is a non-steroidal anti inflammatory. I tried it for a while, and on the third day had awful stomach pains, and diahrea. It actually made the inflammation WORSE. I havn't had any luck with anything the doctors have given me, apart from iron injections and anti-diahrea tablets (and I've tried everything he threw at me!)
I honestly think you should go back and get the test done. I didn't find it too bad, even though I had to have it twice. The first barium went through so quick, that I had to have another one. You get to lie down, and they don't have to stick anything up you on this one. Then you'll know if there's inflammation higher up or not.
Another thing you could try, is to come off all your supplements for a week, and so how you feel then. I did this last year whilst on holiday (just forgot to take them). I was surprised at how much better I felt! I think sometimes our livers struggle, and lots of supplements without a break can be too much hard work.
BTW, pentassa is a non-steroidal anti inflammatory. I tried it for a while, and on the third day had awful stomach pains, and diahrea. It actually made the inflammation WORSE. I havn't had any luck with anything the doctors have given me, apart from iron injections and anti-diahrea tablets (and I've tried everything he threw at me!)
aslo
03-11-2005, 08:11 PM
Interesting. Right now the thought of hours of more hospital testing just brings on the panic and depression. How long did yours take? So does that mean you have Chrons? They have nothing for you? Prednisone? 6mp or heavens forbid Remicade?
How bad are you?
How long have you been this way?
How bad are you?
How long have you been this way?
Rosnor
03-13-2005, 08:34 AM
Hi, the test took about 1hr, you have to lie down, whilst the barium goes through to the part they want to look at. How long you're there for depends on your transit time. Yes, they diagnosed me with crohns. I do not have it too bad. I get tired, the runs at times, but as long as I'm careful with my diet, I can cope with it. The drugs only made me worse. Prednisone had an awful effect on me. I could hardly sit up, let alone stand whilst on it. Really ill. Have not tried Remicade. I do not consider myself to be ill enough to warrant it, but if I ever got seriously ill, its something I would consider. When I took the steroids, I wasn't very happy about it, but at that stage I was in a bit of a state (made a lot worse with the Pentassa and iron tablets!), and would have swallowed anything that could help.
When I first had symtoms, my youngest daughter was only a baby, and I was breastfeeding. She is now 12. I was put on anti-inflammatories, they didn't affect me so badly then, and after about 4 mnths on them, was greatly improved. I was fine until about 3 years ago, when it all started up again, and this time any drugs they gave me seemed to make it worse. I
I am going to the drs. for a check up soon, and this time I am quite tempted to try whatever he suggests again, just to shake off this tiredness, which I know is due to anaemia, and high ESR. My dr. said that if the part of the intestine is inflammed that absorbs iron, then it will not absorb it, whether in food, tablets or whatever, which is why I have to have injections from time to time.
I know how you feel about tests etc. Sometimes they are so unneccessary. I once told my husband that to get me to hospital they'd have to drag me there kicking and screaming! I'm not sure what I think now, I'd go in if I had to I suppose, but would try everything else first. It would be a last resort, as would the Remicade.
When I first had symtoms, my youngest daughter was only a baby, and I was breastfeeding. She is now 12. I was put on anti-inflammatories, they didn't affect me so badly then, and after about 4 mnths on them, was greatly improved. I was fine until about 3 years ago, when it all started up again, and this time any drugs they gave me seemed to make it worse. I
I am going to the drs. for a check up soon, and this time I am quite tempted to try whatever he suggests again, just to shake off this tiredness, which I know is due to anaemia, and high ESR. My dr. said that if the part of the intestine is inflammed that absorbs iron, then it will not absorb it, whether in food, tablets or whatever, which is why I have to have injections from time to time.
I know how you feel about tests etc. Sometimes they are so unneccessary. I once told my husband that to get me to hospital they'd have to drag me there kicking and screaming! I'm not sure what I think now, I'd go in if I had to I suppose, but would try everything else first. It would be a last resort, as would the Remicade.
aslo
03-13-2005, 11:39 AM
Rosnor with your small intestines so messed up, do you have neuropathy? muscle spasms, numbness tingling etc. I guess I have two bad problems, one similar to thoracic outlet syndrome. My life is ruined.
Rosnor
03-13-2005, 05:24 PM
I don't think so. I sometimes get a hot feeling at the top of my leg, like hot (or very cold water), but put that down to where I've had iron injections. I often get very bad lower back pain, but I think that's when the inflammation is bad (like if I've drunk too much coffee). I get the twitchy eye thing when I'm run down, and itchy skin at night. They're all things I can explain I suppose, and even the small intestine thing, I explain away to myself, I've had something I shouldn't, drunk coffee, had sugar, food additives etc. I suppose its a form of denial, but I still consider my situation to be temperary, or at least improvable. It took me years to accept a diagnosis of Crohns. I kept telling the specialist that inflammation there didn't automatically mean Crohns, that allegies etc etc could cause it also. Just a bad patient I quess!
If I were to get worse, I think I'd try a SCD diet or something.
If I were to get worse, I think I'd try a SCD diet or something.
Rosnor
03-16-2005, 01:28 PM
Aslo, have you tried Vit B12? It can be displaced by taking folic acid, and a deficiency can cause neuropathy symptoms. One sign of a def. apparantly, is a crack up centre of tongue. You could read up more about this, to see if you think it fits. Just a thought. GL