Uh...hi?

[beccazilla]

Hi there. I'm Becca. 29 and I have been diagnosed with crohns for a little over three months. Just gonna kinda put my story out here and see what I can learn.
I've been overweight pretty much all my life. Always have had stomach issues, now they just have a name. Almost two years ago, went into the er with what was diagnosed diverticulitis, found out during this flare that it was in fact the crohns. I have had noticable psoriasis for about ten years. Also two miscarriages before successfully having my daughter. Also rh neg.
I went into er 3 months ago with what we thought might be a gallbladder going bad. Since this pain was on my right side of my abdomen, didn't think it was the diverticulitis. There were periods of just ow between bigger bouts of oh dear god take me now pain. Had ct scan and they ended up admitting me. Two days of npo then liquid to normal diet in 24 hours. They had me on antibiotics and meds to coat my stomach they said. Also blood thinners for clotting (apparently a hospital policy).last day I spoke with my newly found gi doc, he told me to schedule testing ( colonoscopy) so they could see what was going on.results of colonoscopy pointed to crohns. He subscribed something that day while I was still sedated that I cannot recall now. My insurance wouldn't cover it so they put me on pentasa. After two weeks of pentasa, no improvement. If anything I was having more bad days. I had the barium swallow test and was formally diagnosed.
After the follow up appt with gi I am still clueless. He gave me a 12 day supply of aricept I belei

 

[beccazilla]

Grrrr silly phone. Aricept I believe. didn't explain how serious my disease was or anything. Just generalities. Drink a liquid diet, nothing that's hard to digest, etc. Then said he would push my insurance for remicade.
I've lost probably 80lbs in 4 months. Which isn't a horrible thing I guess. I am under 210 for the first time in a long time.
I know I have so much research to do andd I am so thankful to have found a place where I can talk and ask freely. If I may....
1. Are crohns and psoriasis linked? Things I've read say yes, that they are both immune system issues. If that's so, do you see more skin flares when you see belly flares?
2. How long do flares typically last? Insurance issues have prevented me (for a bit) going to the dr. But I still can't eat much. I hurt, either can't poo or its explosive poo. So very tired. Just so tired. Can't stress that enough.
3. I am terrified of systemic drugs ie remicade. I have a three year old who gets colds. And immunizations. Can anyone help there?
I am just so lost, so confused and so tired. Thank you.

 

[MoRymes]

Hi Becca,

I'm sorry you've been experiencing these symptoms for so long. At the same time, I'm happy you've finally got a diagnosis! I was in a similar boat as you. My symptoms were not quite as severe, but had been experiencing them for over 2 years. Just last week I was diagnosed with Crohn's. I definitely feel a little better now that I have a confirmed diagnosis, because at least now I can work on developing a long-term treatment plan that works for me.

Unfortunately, I don't have the knowledge to answer your questions. Many on this forum do, and I'm sure they'll speak up soon.

Do you mind if I ask what other medicines you've tried besides Pentasa and Aricept? Are you still on the Pentasa (I've read it takes time for this to begin exerting an effect)? Do you know where specifically your Crohn's is concentrated within your digestive system (ileum, etc.)?

One thing to definitely start doing if you haven't already is beginning a food log. Keep track of which foods you respond well to and which you respond not-so-well to. Based on that, you can work on tailoring your diet to suit you. I can tell you that for me, for example, moderate amounts of fiber and more difficult to digest foods don't exacerbate my symptoms, but for many others they do. So, it can really vary person to person.

I can absolutely relate to your feelings of confusion and tiredness. I have recently been feeling the same way. I'm a very energetic person, so this is extremely out of character. I think if you can work with your doctors to develop a treatment plan that helps your symptoms and pushes you into remission, you can then work on developing your own long-term plan to keep in remission. This is what I'm working on currently.

Keep us updated on how things are going for you. I hope you're able to find some relief soon.

 

[David]

Hi there Becca and welcome to the community. I'm sorry to hear of your diagnosis

If your insurance approved the Remicade, my personal suggestion would be to take it. It's a great medication and usually works well in getting inflammation in check and often helps with what's called, "mucosal healing" as well. However, I'm also a fan of hitting the disease from every angle. It's critically important to get the inflammation down as soon as possible so it doesn't do irreversible damage and keep it down. I realize this will be a lot to throw out at you, but in an effort to help you start on your education, some suggestions:

- Western Medicine - Take the Remicade if you can.
- Dietary changes - Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Two studies in adults have had great results (see the stuck thread in when following that link) and there are very few side effects. It's also not very expensive. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked. DO NOT blindly supplement, treat these as medications and get your levels tested FIRST.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas. I'm personally a big fan of tumeric (curcumin) and strongly suggest utilizing it.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.

 

[Jennjenn]

Hi welcome

Going through all of this is tough. If your doctor recommended remicade then read up on it. It helps a lot of people and has the possibilities of keeping one in remission for a long time. As with anything there are possible risks and possible side effects involved.
I once was on Remicade, and as everyone's body is different...... to answer your 3rd ? I never got a horrible flu or cold when I was on it. I was sick in other ways from crohns. When I got off of Remicade I got a horrible flu and cough. Go figure! Those meds they gave me for the flu caused more inflammation.
There are other drugs that also might be good for both the crohns and psoriasis. Ask about possible Humira also. There are choices out there, and its good to look at many options. David mentioned a lot above!

 

[Judith]

Hi Beccazilla,
Welcome to Crohnsforum. I am sure you will feel very at home here and we are happy you have joined us. Everyone at CrohnsForum is wonderful. I am certain you will see that soon - if you havent already.

Your level of exhaustion is actually a very common symptom when you are in a Flare. Check out our wiki page on [wiki]Fatigue[/wiki] for more information on that.

Many people are able to receive (most) immunizations while on Biologics such as Remicade, Humira or Cimzia. Your response to the immunization will not be as powerful a response as you would have while you are not taking a Biologic medication so I would not deliberately expose yourself if someone you know is ill.

You are not able to receive the "Live Immunizations". These are often given as a spray in the nose but sometimes can be given as an injection. Just make sure you do not receive any "Live Vaccines".

While you are on a Biologic type medication you are open to something called Opportunistic Infections. These are infections that would not typically infect someone with a fully intact immune system. It is recommended you not go exploring in caves due to a certain type of fungus that lives there called Histoplasma capsulatum (the disease you get from it is called Histoplasmosis ).

Also, Coccidioides immitis typically found in the soil of Southwestern states can cause Coccidioidomycosis . I see you live in Illinois so hopefully this will not be an issue for you.

Welcome to CrohnsForum. I hope you are feeling better very soon.
Judith