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Crohn's Disease Forum » Your Story » Flare up, I think!


09-02-2012, 03:13 AM   #1
danirenae
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Flare up, I think!

I was diagnoised with lymphocytic colitis in highschool so about 15 years ago. I live in a small town in Northern, Northen Califrnia almost Southern Oregon. All the doctors here like to treat it like Ulceretic colitis, which it is definetly, not because the really don't understand it. I took Ascal for many years but it gave me terrible headaches and was very expensive. I have not had a major flare up in years. I do get the minor few days here few days there of feelin unwell and having the dreaded D. I also get and pass kidney stones often (about 2 to 3 times per yer) and I have a blood disorder that makes me naturally anemic and I get extremly sick with iron. About two months ago I thought I had a flu bug or a small flare, ended up dehydrating and going to ER with a Kidney stone. For the next almost two months my stool was green. I had never had this happen before. About three weeks ago I woke up with the worst abdominal cramping, bloating, egg burps, diarrhea ever. It lasted 3 days before I went to the doctor and I had lost 15 pounds. I am a short heavy girl who is constantly on and of of prednisone so weight loss is rare for me. The doctor thought it was gallstones but now is telling me he thinks it is just a gallbladder and or pancreas flare up because my colitis is so flared up. He had me on flagyl for a long time and just called something else in. I have had flares in the past but nothing as painfull as i have experienced in the last 3 weeks. My question is: does anyone else have problems with their other organs and is it linked to my colitis? Everyone I have ever met has UC or Crohns which is not the same as LC. I do not drink and I am real careful about what I eat. I am still losing wieght and I am so tired all the time. Does any one have any advice or recommendations or have experienced any thing similar????
09-02-2012, 04:37 PM   #2
Angrybird
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Hello and welcome to the forum

I am a crohnie so could not advise about but I think it would be very helpful fou you to check out our microscopic colitis sub forum especially this thread: http://www.crohnsforum.com/showthread.php?t=18407.

Out of interest can you recall the new med that your doc is sorting?

AB
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
09-02-2012, 07:17 PM   #3
danirenae
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Thanks and I will check out the thread. he just had to switch what he prescribed because I currenty have no insurance. It was originally pentasa but I couldnt afford it. I pick the new med up tomorrow and will let you know what it is. The last 5 years or so I have been using b12 and diet and exercise to control my flares. Maybe I have just forgotten how painful this can be but it is sooo nice to read other peoples storys and know I am not the only one feeling this way. Thanks for responding. I really appreciate it!
09-02-2012, 10:27 PM   #4
David
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Hi there and welcome to the community!

I was diagnosed with Lymphocytic Colitis is 2010. What you describe is not associated with LC that I'm aware of.

Why are you on vitamin B12? Have you tested low for it?
What is the name of your blood disorder? What happens specifically?
Why are you on Prednisone? What dose and for how long?
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09-02-2012, 11:53 PM   #5
danirenae
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As I stated I am from a small town and was diagnosed with LC in 1999. Not many doctors here are familiar with it and treat it like UC. I do not absorb b12 and have been either getting shots of it or taking supplements since 99. I realize these current symptoms arent typical and are unlike any thing I have experienced in the past. I have a blood disoder called beta thalacemia so I always test as anemic and I am usually really tired and was told that the doctor think that is why or where my LC stems from. My dad had similar stomach problems but the dotors never figured out what was wrong with him. They did do a lot of exploritory surgerys on him which I do not want. He turned to street drugs to deal with his pain and depression which inevitably took his life. I have seen some rally good gastoligist over the years that have not been from Redding but I am currenty without insurance. I refuse to take asacol because I took it for years 4x a day and it did not seem to work.
09-03-2012, 12:02 AM   #6
danirenae
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Apparently I am too wordy in what I write. Prednisone is the go to for the doctors here. They like to prescribe me prednisone and flagyl and sometimes cipro for my kidneys. I am so thankful to be part of this forum because it is nice knowing other people have tummy issues too. I havent experienced any thing like this before, especially the green stool. I do understand that these arent normal LC symptons hence why I been to the doctors once a week for 3 weeks. By the way...this forum and the people on it are very awesomeE
09-03-2012, 01:33 AM   #7
Aussie
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Hi Danireae, sometimes microscopic colitis can be associated with bile salt malabsorption, so trialling Questran would be a good first step. Next trial imodium to try and control the diarrhoea, if that's not working and you're desperate for relief, then consider budesonide (it's a gut specific steroid - doesn't give anywhere near as may side effects as prednisolone), although your symptoms will likely recur once you stop. If you're needing repeated courses of steroids and the above isn't working, consider escalating therapy upto a thiopurine (AZA or 6MP, although these take a few months to start working).

Best wishes.
09-03-2012, 02:06 AM   #8
danirenae
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Thanks sooo much for the recommendations. Imodium is and has forever been my go to but for the last 3 weeks it is not working. I will definetly discuss the other recomendations with my doctor. At this point I think he is scratching his head at what to try next too!
09-03-2012, 01:05 PM   #9
David
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Hi Dani,

Have they determined WHY you don't absorb B12? Do you have pernicious anemia? For example, do you have antibodies against intrinsic factor, gastric parietal cells, or B12-IA complex?

Were you ever evaluated for Celiac disease? There can be a proliferation of lymphocytes associated with Celiac and a pathologist can screw up and call it LC. Especially 15 years ago when both were less well known. And Celiac can lead to B12 malabsorption.
09-03-2012, 02:12 PM   #10
danirenae
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I have been tested for celiac disease and do not have it altough I do not eat very much gluten because it upset my tummy but then again so does pork and red meat and a lot of other stuff. I am anemic because I have beta thalassemia and a lot of people with this have severe intestinal problems and are often diagnosed with either IBS or crohns or colitis. I do not know if these diagnoses are correct as I am not a doctor. I have had many colonoscopys and I get told every time my intestianal track is inflammed and they find excess white cells and polyps but no ulcerations. With b thalassemia my hemoglobin is abnormally formed and I am low on iron but cannot take iron. I am currently without insurance or I would have the doctor rerun everytest under the sun on me. I do not ever remeber being this sick in my life. i am looking into the bile salt malabsorption becuase my stool is sometimes yellow but has been mainly green. I just want some tummy relief and soon!
09-04-2012, 12:55 AM   #11
danirenae
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Thank you for your prayers. I appreciate them. The doctor just started me on 1500 mgs daily of sulfasalazin so I am gonna see if this works.
09-30-2012, 06:07 AM   #12
Catherine
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I gather from your post you have thalamenia beta minor? Do your doctors order iron studies to confirm your ferritin status. It is possible to have both thal and concurrent iron definery anemia.

David when someone with anemia cause by thal only supplements with iron there ferritin level increase without any increase in hemoglobin level and often leads to iron overload. Most thals supplement with both b12 and folate due to problems with how there bodies use iron.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
09-30-2012, 08:34 AM   #13
danirenae
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I do not know if the doctor has checked this. I do know that I cannot take iron supplements of any form or eat a lot of food with iron in it because it makes me very ill. many years ago a doctor that has since retired wanted to see what would happen if I took iron and inreased the iron in my diet. It resulted in a lovely little hospital stay! I will ask my doctor about checking my levels next time I see him. I have never met anyone else with b thalassemia (other than my father and he had all the same health issues I seem to be having) but would love to talk to someone with similiar issues. I just seem to get so sick sometimes and nobody ever knows why. It is a bit frusterating!
09-30-2012, 06:15 PM   #14
Catherine
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I would try this group.

thalpal.com

My daughter does not appear to the common thalassemia genes, but we have all the testing done due some interesting test results. But they are still recommending that she have partner testing for childen. The above group helped me greatly during that time.

I know of one other member here with thalassemia, maybe start a new post asking whether anyone has thalassemia.

Most with thalassemia minor do not have problems with iron in foods. Supplements of iron in minors can cause iron overload but iron overload is a major problem for those with thalassemia major who regular blood transfusion to keep them a life.

As you already know iron supplements have caused you problems in the past, you need to know the ferritin levels, as there are treatment for iron overload if that is a problem for you.

Please contact the above group as they will be able to help you sort out which of your problems are related to thalassemia itself.
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