• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Advice please?

Hello!

I am new here and hope to get a lot of information from everyone. :) I will try to keep my story short and sweet so you don't have a lot to read. Ha! :lol:

In 2008 I began to become very stressed bc of the relationship I was in. My stomach would hurt, extreme lack of appetite (eating maybe once a day), rapid weight loss, lethargic, diarrhea and arthritis type pain all over my ENTIRE body. I went to the doctor and he diagnosed me with IBS. I followed his instructions of diet and probiotics/fiber supplements. Nothing was helping me.

When the relationship ended, my pain began to slowly go away. Shortly after all of this, I developed an abscess on my buttocks. The abscess continued to grow and become very painful. It eventually burst on it's own and I was left with a hole in my skin (the fissure/fistula). My doctor referred me to a GI surgeon and she then performed surgery to fix the anal fistula.

I was symptom free for approx. 4 years. About a year ago I began to have anal discharge, arthritis pain and stomach pain which made me go back to the GI surgeon for an exam. She put me on 2 very strong antibiotics which stopped the discharge. She then performed a colonoscopy on me. The photos showed tons of inflammation. That is when she diagnosed me with Crohn's. The next step was to see a GI.

I do not have health insurance and can not afford to see a GI. The stomach pain has subsided but the discharge has come back 2 times since my diagnosis. The first time it happened, the GI surgeon was unsure of the cause. She said she saw some inflammation around the anus. Has anyone else experienced this?

I have always had diarrhea on a daily basis. My bowels are rarely "normal" and solid. I'm almost positive stress is the trigger for my Crohn's. I take all stress in my stomach. Diet does not affect my body at all. I came down with the flu about 2 weeks ago and since then, my legs have ached non stop. It's more of a muscle ache rather than joint aches. My feet hurt more than normal and my legs ache as if I had gone to the gym and worked out.

Does anyone else have these symptoms and possibly a remedy? I'm also considering joining a gym but will that affect my Crohn's in a negative way?
 

afidz

Super Moderator
Hello and Welcome!
Stress is a common factor in Crohn's flare ups with a lot o fpeople, so I wouldn't doubt that is the cause of your flare ups.
Do you see yourself getting health insurance anytime soon? Crohn's can cause a lot of damage, especially when left un-treated. There are some "natural remedies" that I have heard of people taking. I do not know how effective they truly are, I have never tried them or researched them myself.
Do you know where your Crohn's is? Have you had any blood work done lately?
Try to reduce the stress in your life as much as possible (easier said than done). Par take in stress relieving activities as much as possible (yoga, reading, painting, what ever floats your boat)
There are clinics and doctors out there that will work with you. If you can find a research hospital near you they might help you cover the cost of treatment. You just have to do a little digging.
I hope you start to feel better soon :hug:
 
Welcome to the Crohns forum. I am sorry to hear all that you have been through.
You have some great questions and I will try to help with a few, and there will be others along to help as well.

My daughter, age 14 has Crohns Colitis.
Her body aches too, when she has a flare, especially triggered by a flu.

There are many people who have inflammation in the anal area. Crohns can start in the mouth and flare any where in the digestive system. You might ask about a Cortifoam, it is expensive, but brings great relief. Something we found that is effective too and not nearly as expensive is the cream: Proctozone HC 2.5% I think you would find great relief with either.

My daughter can eat more than most too. Although when she is flaring she avoids high fiber foods. GI suggests no pop, no gum- they can cause gas and bloating. She doesnt eat popcorn because it can get caught in the inflammation.

There is financial assistance available in most states, and someone on here maybe able to help you with that. Have you looked into that yet?

Hopefully you will get the help you need and get back into remission again soon.
I wish you the best and if I can help with anything let me know.

Be sure to check the forum page under general IBD discussion: Fistulas, fissures and abscesses.
 
Afidz: thank you for your reply! I believe my crohns is in my colon. I do stress very easily so I need to find ways to reduce it. I also suffer from depression and am on medication for it. Its a constant battle. I have never thought to look for research hospitals. That is great idea. I'm looking for a better job with health insurance so I pray I find something soon. I have not had any blood work done. What would this show? Still new to this and need to do lots of research! :)
 
Hope345: thank you too for your reply! I have applied for medicaid but was denied BC apparently I make too much money. Sooo not true! I have a job that offers health insurance but I had to work less hours last year due to the pain the crohns was causing and with needing the colonoscopy. Therefor, that reduced my average hours to below the limit to receive benefits. It seems completely unfair but I understand their stand point on policies. I get sick and lose my insurance. It sucks. I do not make enough to pay for private insurance as most of those are close to $300 a month! There's just no way.

You mentioned your daughter gets flare ups caused by the flu. I wondered if that was possible. Any idea why/how it causes it?
 

afidz

Super Moderator
Blood work can show A LOT, I am still learning so I am going to tag Jennifer to make sure I didn't miss anything.
Blood work is done to detect deficirncies, inflamation, infection, pretty much anything.
Common deficiencies in a Crohn's patient would be iron, hemoglobin, and Vitamin B12 but there is a lot of other things that can be low as well. Certain deficiencies like B12 for example, indicate where one's Crohn's is. B12 is only absorbed in the terminal illieum so if you are lacking B12, chances are that terminal illieum is affected.
Blood tests like CRP are used to test inflammation levels, these tests are pretty generic. If your CRP is elevated it means that there is inflammation somewhere in the body, but not necessarily in your guts.
if you have an elevated white blood cell count it indicates some type of infection in the body (again not necessarily in the guts)
I am sure I am missing a lot but these are the basics, I am sure someone else will have more to add to what I have said.
 
Top