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08-14-2012, 06:04 AM   #1
Amanda D
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New to the group

Hi, my name is Amanda and I was diagnosed with Crohn's in June of this summer. I have spent time reading the posts on this forum and find its contributors very helpful. Many of my concerns and questions are addressed throughout the threads.

I want to preface my post by saying that my writing and thinking are very fuzzy and confused these days so this may come out as complete gibberish for which I apologize.

Registering for the forum was a big step for me because becoming part of this community means that I am acknowledging my diagnosis. Months before I was diagnosed in June, I was in denial that something was wrong with my system--I just thought I was eating the 'wrong' things and stressed. When I finally saw a doctor, I was at my weakest, most vulnerable point in my 32 years. My mom has been living with me since late June, which is a huge blow to my independence but I surrender because I Need her with me (it has also been a mixed blessing since we have strengthened our relationship). I have a wonderful support system of friends and family but almost all of them are long distance and only one of them is familiar with the disease. Reading the posts on this forum assures me that there are other people who struggle with troubles similar to the ones I face.

I am optimistic almost all of the time, possibly to assure others that I am okay but nonetheless it usually works. However, I have break downs and hate that I feel so crappy. Although I do not dwell on it, my body and brain hurt constantly. After a colonoscopy in June, my doctor started me on Prednisone and a week later on Imuran. The pain in my gut and head have been so severe that I take Percocet. Two weeks ago Friday I started Humira with four shots. This Friday I will take the next two shots. I have not started feeling any good side effects yet but I am confident they will come (right?). Even before I started taking the Percocet, my head was very fuzzy and confused, which drives me crazy. Before all of this happened, I was very active, both physically and mentally. Now my energy level is little to none. Everyday I do some type of brain and body exercise but I have learned to limit it or else completely wear out. I should acknowledge that the pain in my gut is not a knife-stabbing-constant-pain-everyday like it was the first six weeks which I consider a small improvement.

One of my biggest concerns right now is about food. I am scared of food. With my mom here, she cooks and I have been able to eat anything but in very small portions. I am not hungry very often. I think maybe part of it is a feeling that I am scared of how it will exit my system (I had constant diarrhea before diagnosis but after starting medication I have a bowel movement every few days). But I do not really know.

Thank you reading this and I welcome any and all suggestions and comments.
08-14-2012, 06:51 AM   #2
ellie
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For what it's worth, my experience has been that when my Crohn's really flares I get severe iritis (twice in last 6-7 yrs)and my CRP and ESR both go sky high. The "fuzzy brain" seems to parallel the inflammatory markers.. When they go down I can unravel the Sudoku again! (now I know how to recognize when the fog lifts!)


HD
08-14-2012, 07:59 AM   #3
Angrybird
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Hello and welcome to the forum.

From your thread can I take it that you are still having symptoms with the tum? Are you still on the Prednisone and if so what dosage are you on? Is your GI aware of the the fuzzy/painful head and did this start before you started the medications or after?

Also one thing you may have seen from reading here is that it is common with people with crohns to suffer from vitamin deficiences due to malabsorbtion - have you had any of your levels checked? If not it may also be worthing getting these checked as if low levels could point towards some of what you are feeling (a low B12 for example can effect how you are feeling both physically and mentally).

Food is a tricky area and I can understand your concern about it, perhaps have a look at our diet and sups forum and there will be info here about what you can try to gradually ncrease your intake. Some find a low residue diet helpful whilst others keep a food diary so they can pinpoint problem foods.

I am glad you have decided to join and hope things can improve for you soon.

AB
xx
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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
08-14-2012, 09:25 PM   #4
Amanda D
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Hi and thank you both for your replies.

ellie, I am "glad" to hear that I am not the only one with a fuzzy brain sometimes! Is there anything you've found that helps clear it or is it just part of a flare? How long have you been dealing with Crohn's? What kinds of medications have you tried and have worked? (If you don't mind me asking.) And please feel free to address the below questions, I would like all the feedback I can get!

AB, I am still on Prednisone at 30 mg. I started at 40 mg for a week and when I started the Imuran, my doctor lowered the dosage of Prednisone. I have told him about my head pains and he thinks it is the combination of medications but is kind of confused since some people take Prednisone for headaches. I guess I'm not sure. They have done a lot of blood work and my levels for nutrition (or whatever the medical term is) are fine. I started taking a daily multi-vitamin because I had heard about the poor absorption with Crohn's. I am glad you reinforced the message. I have been eating well-balanced meals and will check out the recipe/food forums you mentioned, I love cooking and trying new recipes!

I am concerned about my decreased immune system. I have noticed that cuts and scrapes that usually take a day or two to heal have taken and week and a half! Do you have any experiences with a lowered immune system, anything that has worked for you or not?

Thanks again for all of your support!
ajd
08-14-2012, 10:10 PM   #5
David
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Hi Amanda and welcome to the community!

I want to reinforce what Angrybird said. You need to get your vitamin and mineral levels TESTED. Taking a multivitamin is NOT enough if you are deficient due to Crohn's disease. Nowhere near enough. Please go in and get, at the very least, your vitamin B12, vitamin B9 (folate), vitamin D, and magnesium levels tested. Please trust us on this as such deficiencies are VERY common in people with Crohn's disease and PROPER supplementation can make a HUGE difference if you are indeed deficient.

We're here for you!

*hugs*
08-14-2012, 11:32 PM   #6
tots
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ellie-

Wow! I was diagnosed 21 yrs ago and never put two and two together! You did for me.
I read David tell "us" to get our Vit levels done. Havent done that yet- will call family Dr
to ask if he will run them for me!!

Thanks David for keeping up the "fight" !!

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
08-15-2012, 01:33 AM   #7
Angrybird
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Hiya, yes I have noticed issues with a decreased immune system. The Imuran if nothing else will play a part in this. When you were started on it it should have been explained what this can do and when I was put in it I was warned that if I felt poorly (cold, sore throat, cough etc) for more than a few days to let them know as they have to check and make sure the med is not causing things to get worse. This is why you have to have regular blood tests on this - to keep an eye on your blood counts. What dosage are you on for the Imuran and how long have you been on it?
08-15-2012, 09:36 PM   #8
Amanda D
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David, thank you very much for the strong encouragement to AB's suggestion. I truly appreciate it and will call my nurse tomorrow to set up a time to do it. This is exactly the kind of information that I want and need so thanks!

AB: I have been taking 50 mg of Imuran since July 5. Yes, I was warned repeatedly about the side effects by the doctor, nurse and pharmacist. I just couldn't believe that simple cuts (really just cracked thumbs due to gardening and washing hands) took so long to heal.

Thank you again, all of you!!
Hope you are all well
08-15-2012, 10:01 PM   #9
Km8367
 
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Hi! Welcome to the forum! I am also a newbie, just found out in March that I have crohns. It can be very frustrating at times because you feel like you are just taking random shots at what will work to make you feel better. I have had days where I feel completely lost and dont know what to think but one thing you have to do with this disease is take it one day at a time and stay positive as much as possible! this forum has been an amazing help to me and hope it helps you as well! good luck
08-15-2012, 10:23 PM   #10
michaelearnest
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Amanda - the one thing I don't see mentioned above is that you need to have a great primary care physician just as much as a good GI physician. Your primary care physician should do a physical and test for all vitamin levels, etc. My primary care doctor and GI work hand in hand on my Crohns. If I go to my GI doctor, by the time I get back to my primary care doctor, he has already been faxed or emailed results from the GI visit. I was deficient in those areas and by taking a Centrum multivitamin for several years, my levels have been fine. I have talked to other Crohns patients who tell me they go to GNC and buy stronger vitamins that will give you 200 or 300% of recommended daily doses. My GI and Primary doctors both agree that anything over 100% is a waste. My GI is connected with the Crohns research group at the Cleveland Clinic. All of our bodies are different but as David states, go get the levels tested.
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08-15-2012, 11:44 PM   #11
David
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Often times FAR OVER 100% is required for a Crohnie. For example, the RDA for B12 for adults 19-50 is 2.4 mcg per day. If you're deficient in vitamin B12 due to Crohn's disease, chances are you're going to need loading doses of 1000mcg (injections) to get your levels up fast and thereafter 1000mcg around every month or so depending on your case. Sometimes more, sometimes less.

There are a variety of other vitamins and minerals where this is the case as well.

It's all about getting tested, supplementing based upon those tested levels, then getting tested again to adjust the dosage or even delivery mechanism as needed. We need to treat vitamins and minerals as medications and be very astute regarding our usage of them.
08-16-2012, 06:58 AM   #12
Amanda D
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Thank you guys very much! I do have a good primary care physician--she was the one who sent me to the ER days after I had started medications (for an ulcer she suspected I had) and got worse. It was at the ER I had a CT scan and they saw inflammation and I got into a GI doctor a few days later for a colonoscopy. And my GI doctor is really good too. I feel very fortunate to have gotten this diagnosed so 'quickly' since so many folks go through years of misdiagnoses. Excellent observation and recommendation!

I will have my vitamin levels checked STAT

ps: michael, I am familiar with the good stuff going on at the Cleveland Clinic (although not my personal health) as I used to live in Toledo and Bowling Green for graduate school. And I always loved the name "Cuyahoga," I think it would be a great dog name
08-16-2012, 09:23 AM   #13
ellie
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Hi Amanda
Re the "mental fog", the first time it happened, as the CRP,etc, reverted to normal, about a week after i started in the pred forte drops for iritis, I woke up one morning and felt "back to normal", as the inflammatory markers fell. That was in 2005, aged 50, when I had no inkling of having Crohn's. Fast forward 5 years, and a second bout of iritis following a diarrheal illness (this time with U/C symptoms), I finally had a colonoscopy and definitive Dx. For me the GI presentation is relatively minor, with arthritic grumbles being the main constant symptom, and iritis, with it's risk of visual loss, being the greatest fear.
The second real flare, I was a bit wiser to the situation (just before diagnostic colonoscopy), and did my inflammatory markers daily.(I work in the healthcare area)Interestingly, althought the GIT symptoms were settling, the CRP and ESR rose moderately and STAYED there.. which sent me back to get the eyes checked before they got too bad that time!
Basically I've learnt that if the inflammatory "numbers" are sick, then I am too.. I only really appreciate it after I start to improve!
(other silly minor observation is that whenever there's been an inflammatory episode I get horizontal ridges on my fingernails!)
08-16-2012, 09:27 AM   #14
ellie
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PS - daily VitD and probiotics seem to help keep things on an even keel. My VitD levels were lowish normal when first tested
08-16-2012, 09:33 AM   #15
ellie
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Pps - there is a Medscape Gastroenterology article in the last few days talking about the implications of Vit D for IBD patients. I'll try to copy the link when I'm on a proper computer(my computer skills are a bit rudimentary I'm afraid )
08-16-2012, 03:34 PM   #16
Amanda D
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Thank you ellie! You mentioned your fingernails, I remember before I was diagnosed I too had horizontal lines in mine!! They have gone away since I've been on all these meds...
Looking forward to reading what you pass along
08-16-2012, 04:24 PM   #17
Sick of Crohn's
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Hi Amanda,

I have had Crohn's for 10 years and have wondered why I seemed fuzzy and confused at times. This only happens when I m having a mild to severe flare up like now. I never put 2 & 2 together. I joined the forum yesterday and have learned quite a few interesting things. Thanks for sharing.
08-16-2012, 08:04 PM   #18
Amanda D
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Hi Sick of Crohn's: So glad to know ellie and I aren't the only ones!! I am just hoping that I can get back to writing my dissertation soon. Is there anything that helps you clear the fog?
08-16-2012, 08:33 PM   #19
Sick of Crohn's
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I have found when I remember to take my vitamins I am fine but when I am off of the Vitamin B12, vitamin D, Vitamin C in addition to my multivitamin I start to feel fuzzy and a little discombobulated.
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