Other Diseases

Unfortunately HS is not the only disease  suffer from. I also suffer from Pars Planitis.

Pars Planitis is swelling and irritation of the uvea, the middle layer of the eye. The uvea provides most of the blood supply to the retina.

What is Pars Planitis?

Pars Planitis is often referred to as Intermediate Uveitis.  Patients with Pars Planitis have inflammation in the intermediate part of their eye immediately behind their natural lens in the front part of the vitreous cavity.

Is Pars Planitis dangerous?

Yes, patients with chronic recurrent inflammation are at risk to develop retinal scarring, cataracts, peripheral retinal detachments and glaucoma. In order to prevent these vision  blinding complications patients need alternative therapies.

Unfortunately I now suffer from Glaucoma. I have a very serious case of Glaucoma that requires me to take 4 eyes drops twice a day and to see my eye doctor every 90 days max. My eye pressure is very high and I am losing side vision. I am only 39 as mentioned and the out look is not very good.

MY DEALINGS with Pars causes massive pain t my eyes. it is a form of arthritis so a few times a week my eyes swell and feel like they are going to burst out of my head. Again more advil. My vision is very poor. I have inflammation in my eyes that causes vision loss.  My eyes are like looking through a dirty window. All of the time.

Wait that’s not it.

I also have cataracts. The medicine from the pars caused me to get cataracts in my 30’s. I have had surgery in both eyes and had them replaced. both surgeries had complications of course. The first was done, but after it left a Posterior Capsule Opacity. Posterior capsule opacification occurs because lenscells remaining after cataract surgery have grown on the capsule. In some cases, if the condition progresses significantly, your vision may be worse than it was before cataract surgery. Nice yeah I know. i had to have that removed as well.

The second surgery. The next day I had to go in for a follow up. eyes pressure should be about 12 to 15. My eyes pressure was 65. My doctor told me if I was older i would be blind. So what he had to do was cut my eye with a knife and drain the fluids. Man it was gross, then he had to stitch my eye ball. man that was a great feeling. So now my eyes are pretty much in pain daily to go aloing with everything else. And one of the worst parts is the treatment required me to get shots in my eye balls, yes that’s right shot in my eye balls.

So the bottom line is I suffer from Pars and Glaucoma which results in very painful bad vision. I can not even drive at night or even in the day very good.

______________________________________________________________

Of course there is more. I was also diagnosed with Inflammatory Bowel Disease.

The term inflammatory bowel disease (IBD) describes a group of disorders in which the intestines become inflamed. What causes them to become red and swollen is not known. The most likely cause is an immune reaction the body has against its own intestinal tissue.

Two major types of IBD are ulcerative colitis and Crohn’s disease. Ulcerative colitis is limited to the colon or large intestine. Crohn’s disease, on the other hand, can involve any part of the gastrointestinal tract from the mouth to the anus. Most commonly, though, it affects the small intestine or the colon or both.

If you have an IBD, you know it usually runs a waxing and waning course. When there is severe inflammation, the disease is considered active and the person experiences a flare-up of symptoms. When there is less or no inflammation, the person usually is without symptoms and the disease is said to be in remission.

Basically in my case what i have is spasms in my intestines constantly that leave me with diarrhea 24/7. Every morning it takes me a minimum of 1 hour or more to go to the washroom before i can shower and dress.

DIABETES: Yes you guessed it I am diabetic as well. I am taking to medications to help keep this under control. My blood sugar level is always very high.

So needless to say I never really ever feel good. I am always in pain like massive pain and by the age of 40 I am wondering if I will be able to function at all.

9 thoughts on “Other Diseases

  1. Wow, about a month ago I suddenly found myself feeling like I was losing my side vision and my vision was just blurred. It was so scary- I have always had good vision, never wore glasses until one day it was like I was looking at life though a dirty window. It was mainly my right eye. My side vision was blurred and then I started having double vision. It lasted for about 3 weeks.. during that time it got progressively worse to where I had to pull over while driving home from work because I was afraid I might get in a wreck. I went to the eye doctor and then an ophthalmologist. She basically said she couldn’t diagnose without getting my blood work first.

    Well, I never followed up because one day I woke up and it was gone… I could see fine again- even my side vision. That was a real trip. I was so happy to be able to see things crisply again.

    I realized then how lucky I am – I took “sight” for granted before… now I realize just what a gift it truly is. I wonder if this occurrence is related in any way to HS?

    1. Yes it sounds like we can really relate. I am glad you found my page, your comments truly mean alot to me and if is great to talk with others going through this.

  2. I too suffer from HS which eventually caused me to develop Rheumatoid Arthritis. My rheumatologist and dermatologist collaborate on my case and fortunately they both listen to me and work with me regarding my treatment. I have suffered from HS since I was 12 and was only properly diagnosed 7 years ago. As a female the scarring and odor have been very embarrassing to me. What I have is really rare according to he docs but due to the stigma placed on gross skin diseases, I believe that there are many more of us out there. (My Rheumy has been practicing for 40 years and I am the only cause he’s ever seen). I went into all of this because as you have described pain meds and antibiotics along with surgery were my standard for treatment as well. I now take 40 mg Humira injections weekly as well as minocycline twice daily and 6 2.5 mg methotrexate weekly. I supplement with 2 multivitamins daily and additional vitamin d and folic acid. Guess what! It has been amazing for me. My insurance wouldn’t cover the dmards (Humira, remicade, Enbrel, symponi) for the HS but does for the RA.
    THESE SAME DMARDS ARE USED FOR IBS AND CHRONS. they work so well! Even so much better than the surgical procedures. Please talk to your doc about these meds! It cannot hurt and they may alleviate a very large portion of your pain and flares. I still have a flare or two but since starting these meds I have only had 1 in three years, as for the scarring….faded! I hope this helps you!

      1. You are so welcome! I hope he will listen and help you! As I said before, I have suffered this disease for 32 years. It so sux! I hope you can get some relief. I am no longer ashamed or embarrassed of my body nor do I have chronic open sores that cause such severe pain! Good luck and please keep me posted on your outcome.

  3. So…how did your appointment go on the 10th? Did your doc prescribe a new regiment of meds? I hope it went well and the doc was willing to try a new treatment to help you out!

  4. Thank you for your blog!! I am a 46 year old female with HS and Psoriatic Arthritis. I have significant scarring and oozing as you do. I have researched and tried everything since I was 14 yes. old.
    I started Remicade for PA about 2 years ago and go to a tanning bed 1 or 2 times a week. I had not had a flare up that kept me from work until 3 days ago. (Upper thigh) size of a 1/2 dollar. How do I explain this to my boss? I have to wear khaki pants so I try to find pants that are soft and don’t bunch but most any pants hurt. I hate the pain, smell, and don’t go anywhere but to work. I so feel your pain and am sorry you have to live with horrible disease.

  5. This was the first time I had heard of this horrible disease and I can’t even imagine the suffering you have had. I don’t know all the treatments you have had,but in investigating this disease I ran across an article about an injection that someone had used. She had incredible success with it . She wasn’t able to have surgery due to the large areas affected . The injection was called anakinra have you heard of this. God Bless you and my prayers are with you.

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