New Guy...The Hits Just Keep On Coming.

Hi. I'm new here. Got diagnosed with Crohns in January (2012). I had been dealing IBS for about 15 years and then last December got really sick, the biggest part being nausea. The whole trip through the medical system is a story in itself but in the end got diagnosed with Crohns. Did the prednisone thing and got better. I have been off the prednisone for several months and my gut seems to be doing ok. Some days are better than others but all in all it's ok.

Since then I had my knee blow out on me, or at least that's what I thought it was. The pain was so bad I could hardly walk. After another round of doctors it was determined that I have arthritis, related to the Crohns. Did some reading and discovered that this is fairly common. OK, I can live with this, too. They shot a needle full of steroids into my knee about 5 weeks ago. All is well so far with the knee and am not having any issues with any other joints at this time.

My gut doctor wanted me to get a blood test, so I did. It came back that I am anemic. Did some more reading and discovered that THIS is also not that uncommon with Crohns as food has a tendency to pass through too quickly before all the nutrients can be absorbed, resulting in a low red blood cell count. My gut doctor told me to start taking OTC iron supplements with Vit C and get another blood test in a few weeks to see how I am doing.

The latest is that about three weeks ago I started to develop restless-leg syndrome. At least, I assume that's what it is. Shortly after I lay down at night my leg, usually just the left leg, starts twitching about every 30 seconds or so. It's a really creepy feeling that runs up to my left shoulder. It is driving me crazy. Again, back to the internet to read up on this and from what I have determined this can result from iron deficiency. I have been on the iron supplements for two weeks and this restless-leg seems to be getting worse, not better. I cannot sleep at night. I am lucky if I get 2-3 hours of sleep a night. I got a prescription for Ambien which works great but I cannot take it two nights in a row as I have to double the dosage if I take it two nights in a row. Not good.

This is driving me crazy. After three weeks of hardly sleeping I feel like a zombie and am starting to get discouraged about this whole things. All of this goes back to the Crohns. I know this disease affects lots of people and it affects people differently. Any of you had problems with this restless-leg thing? If so...what did you do?

Thanks.
D

Welcome! You'll find lots of info here.

I had that same feeling. I was low on potassium. Have your doc do a vitamin panel. I had hardly any D (bone/muscle pain) B12 (energy-lack of) magnesium (heart flutters) potassium (leg cramps/arm cramps) Being on vitamins has made a world of difference for me. Not that I'm perfect, but then no one is. :")

Hey Reno and welcome! It's good to have you here though I'm sorry the hits keep on coming

I agree with carrolco! Have your doctor test every vitamin and mineral under the sun. As Crohn's Disease is characterized by malabsorption and malnutrition, vitamin and mineral deficiencies are common. And get the results and if you're comfortable, share them with us. We've found that the reference ranges for some of these aren't quite right.

You have a steep learning curve ahead but I suggest you keep reading and educating yourself. Being able to advocate for yourself and be proactive will slow down or stop the hits.

By the way, are you on any medications now?

All my best to you

Hello and welcome to the forum I can ony agree about getting a full vitamin level check as being deficient really can cause a whole host of problems. I was also wondering how the tum is doing and whether you are any meds?

AB
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I am on a twice daily dose of Lialda. For several months I've been taking a multi vitamin, D3, B12 and am now taking the iron supplements. I may start taking the potassium and magnesium as well.

Have you had any of those levels specifically tested?

How much D3 and B12 are you taking? And is the B12 oral or injection?

Is your Crohn's Disease confined to your large intestine or is it in your small intestine as well?

I haven't had any tests run for vitamin levels. The B12 is OTC oral. As far as the Crohns being in the large or small intestine...I don't know. I assumed it was in the small. From the medical diagram I looked at I was under the impression that Crohns was small intestine and colitis was large intestine. I know that when I was very sick in December I had real bad nausea which I was told rarely happens with colitis but is common with Crohns.

1. Crohn's Disease can be anywhere in the intestinal tract from the mouth to the anus. The most common location is the terminal ileum which is the last part of the small intestine before the large intestine. You may be thinking of Ulcerative Colitis which is another form of IBD that is only in the large intestine. However, Crohn's Disease can be found just in the large intestine as well and is then called Crohn's Colitis.

2. The reason I asked is that you're on Lialda. Lialda is formulated to treat disease of the large intestine. If you have disease in your small intestine, there's a very good chance it's doing nothing for it and your small intestine disease could be getting worse and worse. I would definitely discuss this with your doctor and see what the story is.

3. Please get tested for all those vitamin and mineral levels. It's very possible that if you are indeed deficient in B12 due to Crohn's that oral B12 will not get you into the optimal range. It's important to monitor these levels over time to determine proper dosage and delivery mechanism.

Yes, and from what I am reading online right now, being deficient in B12 or folate can lead to low RBC counts.