Crohn's Disease Forum » Your Story » New to the Forum..


03-26-2012, 08:04 PM   #1
Manda
 
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Location: Syracuse, New York
New to the Forum..

Hello, my name is Amanda and I browsed this forum before, but never made an account until now and I'd like to share my story with you and perhaps gain some insight.

It started in my senior year of high school, and honestly most of it is a blur to me now. I had symptoms and had started rapidly losing weight. My parents decided to bring me to our local doctor.. and she told me that it was depression and mostly psychological, and so she sent me to therapy. I went to one session and was against it.

I'm glad I was against it. I can't remember how I ended up with a GI doctor, but I had swapped my regular doctor. They decided to put me on various antibiotics which ended up making me throw up more than I already had been. I was very ill, and I missed a lot of school to go to a GI doctor that was hours away from where I lived. This is the GI that diagnosed me with Crohn's Disease. However.. he ended up being too far and too busy when I became a college student in the city of Syracuse, NY. I switched to a GI in Syracuse. That GI was busy too, and I don't remember much of him. I finally switched to my current GI, Dr. Raymond of Cooperstown/Oneonta, and she is fabulous.

Like everyone else here, I have had my ups, and my way downs. Some of those that I would like to mention is when the past two years I had Lymphedema due to lack of albumin. My doctor's nickname for me is "trouble", because I waited so long to have it checked out. I had seen a PA who told me it was salt. That was ridiculous, and my doctor told her so. I didn't know at the time, so I simply had less salt in my diet. Anyway, he told me that it could be sclerosis, blood clots, or heart problems. He sure gave me a scare! I had an ultrasound of my legs later that day. I am just thankful that he is a fantastic doctor and realized it was my albumin ("Lowest I have ever seen in anyone old or young!"). More recently, in December I had an episode that my parents thought was a stroke. My face had gone numb, I had gotten a blind spot, my arms tingled and then became numb and I was dizzy. I couldn't speak properly, either. I was taken to the ER and somehow ended up having a colonoscopy by my regular GI. They scheduled an MRI that showed my brain was clear. However, the people in the hospital could not tell me what happened or why. Later after talking to my doctor, it became obvious. He told me it was consistent of a migraine with aura. I'm not sure, can that be related to Crohn's Disease or vitamin deficiency?

I have been on a variety of medicines, all pills. Currently I have been prescribed Pentasa & Entocort. My doctor also would like me to take Vitamin D, Vitamin B12, and Iron. My vitamin levels are at anemic levels, and always have been since diagnosis. The dilemma I would like to gain insight on is the following;

I am a college student. I am busy and do not have regular meals that even a healthy person should have. I am in my third year of school, and NEVER have I had medicine that has gotten rid of my symptoms. Even if I am not hurting or throwing up, I always have diarrhea. Since my doctor added the vitamin pills, I have been utterly discouraged. I generally take my meds at breakfast, lunch, and dinner when I can eat them. However, the Vitamin B12 requires that I take them an hour before eating, or 2-3 hours afterwards. It was hard enough taking what I currently did, but tacking these on to take at a different time was.. disheartening. I have never been good at taking my medicine, even in high school/breaks when I could manage. I must mention that I was regular on this new medicine for a couple months. I have quit taking it completely (not smart, I know.. and I am paying for it). In the beginning, my second GI doctor offered me the option of Humira, which I quickly discounted because of the possible side effects, my family's history of heart problems, and because I would have to inject it. Now I am reconsidering because my current medication, even when regular, did not help all of my symptoms. Additionally, an injection every two weeks would be much easier to manage than upwards of 14 pills daily. What would you do in this situation? What is your history with Humira?

I have looked at the forums, but I would like to speak directly to someone who has had experience, you know?

Non-Crohn's-Related facts about me: I am 20 years old. I go to school at Le Moyne College in Syracuse, New York. I am a junior studying Criminology, and I wish to eventually continue on to John Jay's graduate school for Forensic Psychology and a JD in Law. I like all sorts of music, but my favorite is rock. I was born to a Megadeth song. I am a cat person.

I'd also like to thank you for taking the time to read all of this! Whew!

Last edited by Manda; 03-27-2012 at 07:50 AM.
03-26-2012, 08:50 PM   #2
Mary:)
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Hi Manda I have had Crohns for 3 years now and have had 3 serious flares. The last flare I had I developed a fistula...my new GI Dr advised me to start on Humira right away. She believes in using the "BIG GUNS" first. I was REALLY scared because I also have health anxiety and Humira scared me a ton. I gave in and started Humira a year ago....and I'm so happy with it. I get my blood checked a lot and I make sure to stay vigilant about any side affects. HUMIRA gave me my life back..
03-26-2012, 10:57 PM   #3
David
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Hi Manda and a hearty welcome to you.

That tingling you experienced? That's potentially peripheral neuropathy due to vitamin B12 deficiency. Did they take your actual serum B12 levels? If so, what was it?

I have the solution for you. Get on vitamin B12 injections. If you are indeed so deficient that you're experiencing peripheral neuropathy you have no business taking oral doses anyway. The injections are often monthly though some people need loading doses and occasionally more often (others are less often). It's about having your actual levels tested regularly and finding the dose and duration that works best for you.

I'm happy to elaborate on any vitamin B12 questions you have. It's a bit of a... passion... of mine.

Oh, and I didn't know low albumin could cause Lymphedema, thanks for teaching me something! Very interesting.

Again, welcome, I'm really glad you joined
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03-27-2012, 06:56 AM   #4
Angrybird
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Hello Manda and welcome to the forum I have not been on Humira myself so could not advise but perhaps have a look at our treatment forum as there will be info about this there: http://www.crohnsforum.com/forumdisplay.php?f=59. I also agree with David about the B12 injections so do ask your doc about this.

Really pleased you have joined us hun

AB
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Angrybird

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
03-27-2012, 07:02 AM   #5
Manda
 
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Thank you all for the welcomes & input!

David - I did not know that I could get B12 injected too! Thank you! I will have to ask about that. It sounds much more convenient.

Mary - Thank you for sharing your experience with me! I am glad you are happy with Humira.

AB - Thank you for the link, there is a lot to look over!

and I'm not sure why it put Books I swear I hit newbie. Sorry!

Last edited by Manda; 03-27-2012 at 07:50 AM.
03-27-2012, 10:24 AM   #6
David
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You're welcome. For people with CD it's often a far superior delivery method as oral is poorly absorbed.

Let us know how things go
03-27-2012, 12:27 PM   #7
Ihurt
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Just wanted to add, you can get VitB 12 sub lingual, you put in under your tongue and let it dissolve, it gets into the system immediately. This works very well if you do not want to get the shots...
03-27-2012, 12:36 PM   #8
David
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Various studies have shown that there is no real difference in efficacy between sublingual and oral forms of vitamin B12. However, I have yet to find any study where people with Crohn's Disease or others who have trouble actually absorbing B12 are taken into account with the two forms of supplementation. As such, I think it's critically important for people to have their B12 levels regularly tested. If it's found that you're able to get a level above 500 (in my opinion the minimum someone with CD should strive for) with oral or sublingual forms, great. Otherwise, move to other forms of supplementation such as injections.

And as always, the University of Maryland Medical Center states that anyone taking one form of a B vitamin should supplement ALL types of B vitamins to avoid an imbalance forming. So if you take B12, it's a good idea to take a complex B vitamin as well according to them.
03-28-2012, 02:06 AM   #9
Aura
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Hi Manda

It's great that you have found this wonderful community, welcome aboard.

Check out the Humira thread in the treatment forum. I am not there yet but it will be my next step depending how I go on Imuran. I have also had tingling in my face and left torso over the years, had MRI and have white lesions in the front part of my brain. I also have a positive ANA as well. I do get migranes and in the end my neuro seemed to think my tingling was linked to mirgrane.

All questions are good questions ask and you will be amazed at who will have something in common with you. This is a great place I have met some amazing people that have been so great to be around. Thanks to Dexky, Walt, Entchen, Trev, Dustykat you will find many people here that all have a common bond.
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Aura
DX 1998
Meds: 2.5mg Plendil ER. Azathioprine 100mg; Inhibace+ 12.5mg; gastrosoothe 60mg; Simvastatin 40mg; Loratadine 20mg; Fluoxetine 40mg; Provera 10mg; Metformin 2.55g; Cal d forte; 1.25mg, Humira; Panadol 4g; Pred 3mg
03-28-2012, 04:47 AM   #10
Dexky
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Hi Manda, welcome! I don't often get beyond the Parent's forum but Aura^^ rang my bell and your story caught my eye. My son has been on Humira for nearly a year now w/o any problems. He does however still take several vitamins and supplements so I don't think you should expect to give those up. Perhaps your absorption issues will improve with an effective treatment for your crohns. I'm not the patient so I can't really know, but I'd think I would prefer orals to a shot. That being said, my son doesn't even flinch anymore at the thought of another needle. Good luck!!
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03-28-2012, 07:19 AM   #11
SarahDub
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Hi Manda, Welcome. I myself am also a newbie to the forum, and as also a newbie to being diagnosed I can offer only some small insight into maybe your diet issues and also how to help getting the time to eat.

I found eating a low fiber diet has done wonders for me, no more diarrhoea except occasionally when I'm bold and during a big flare. I've discovered juicing and soups as a great help when I'm too exhausted to cook, and that happens a lot. I know your a college student so this would also be cheap and doesn't take much time at all.

remember your not alone, I'd be lost without the forum.
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