Crohns Depression

[Crohniemommy]

Hi everyone. I am new to this forum. I was diagnosed with Crohn's disease in May at 27 years old, just 5 days before Mother's day which was my second Mothers day ever.

It has been somewhat of a depressing journey so far. It took 5 months and a lot of headaches and anger to try and get covered for Cimzia, which I never did and finally went on Humira and took my first injection on October 1st. I started feeling better and took my initial 4 shots, and then the next 2 shots as directed. I went on a family vacation, only to experience intense stomach pain, which led a trip to the ER, and 8 hours later, to have nothing wrong but stomach pains from the medicine and got some pain pills and was sent on my way.

8 weeks to be exact, I started getting some red spots on my stomach...and then some dry, red spots on my face. Told my Doc, and he said make a dermatologist appt ( which I did) and was directed to take my next dose, well.....it got extremely worse after the next dose. My body is now 98% covered in a rash...which I am almost POSITIVE is psoriasis. After two trips to the dermatologist, which put me on creams and medicine and all sorts of crap and also a biopsy (which I wont know until two weeks from now) and I have stopped taking Humira per docs request.

I feel like I cannot win. I am so depressed and I don't know what to do. I cry every day and night and I have two girls, 2 and 3 which I am trying to be strong for but damn it is hard. I am trying to stay positive, but I don't know how to, this rash on my body has really made my self esteem drop...a lot. I have always been an attractive girl and my husband reassures me I look fine but every time I look at myself in the mirror, I cry. I don't want to feel selfish but I cant talk to anyone about this, I mean my life has changed and I cant seem to catch a break! People are starting to look at my face...and I cover my body up all over with jeans and long sleeve shirts (yes its December but I live in Florida and its 85 here) and I am miserable. Why cant I talk to anyone about this? I feel weird..I am so depressed and unhappy its just not me. Its just not me at all...

I feel like the only place I can rant and let myself go and let people know how I am feeling is the only place where there are others like me.

Please someone listen to me....help me...I need to know there are others dealing with this and if so, did the psoriasis get better? Did it go away? Will I always have this all over my body????

 

[Lisa]

Hi Crohniemommy.... sorry you are going through such a rough time right now. What you are describing sounds a lot like what I have - Gutatte psoriasis - if you google that, you will find pictures for comparison. I have had 2 bouts of it, the second one I'm getting over now after I had strep about 2 months ago. It can be difficult for a dermatologist to diagnose it, mine pretty much blew me off with steroid creams to use and that was it. What will help it heal is TIME....and try not to pick at the dry skin or scrub it etc.....

I totally understand about the esteem issue too...last thing I want is my husband looking at my 'creeping crud' as it is not-so-affectionately called.....

Also - sunlight is supposed to be good for this psoriasis from what I have read - the vitamin D helps to clear it up so getting some sun would probably be a good idea. UV therapy is sometimes used to help too.

 

[Madhu]

Hello, sorry to hear this. I dont know about psoriasis but since you have come off Humira, did your doctor talk to you about Remicade? It works wonders for many here.

I hope you feel better soon.

 

[Christi]

Hi Crohniemommy welcome to the forum. I cant help you regarding the rash but i do wonder if its from the meds, maybe you can to your GI about the problem and see if he can help you. Maybe you can also go to therapy and some exercises can help you feel better. I started doing yoga and found it very relaxing and are in therapy. This forum are a great place to talk and finding support. Please feel free to ask any questions. I do hope you feel better soon

 

[Crohniemommy]

Lisa,

Thank you for understanding. They took a biopsy yesterday, and I wont know for sure for a couple weeks, but after my own diagnosis, I think you're right. I pray its not the case, and if so, sunlight helps? I'm asking because being on medicine like Humira, you're suppose to stay out of the sun...so how am I suppose to deal with this and also be on medicine? I am trying to get approved for the second time for Cimzia since I "failed Humira" Have you tried Cimzia or known someone who has and it worked? I also read that if you get a rash from one TNF blocker medicine, I'll likely get it from another?

Christi, I should really try yoga. I definitely need to just relax, and be on my own...its hard when you have two toddlers running around. I used to be a workout person...but lately I've just been having my own pity parties and just letting myself go...terrible I know but I cant seem to get out of this rut! I just would like some good news!

Aarthi,

my GI did mention remicade but my husband and I are still wanting more kids sooner then later and he wants to put me on the least harmful medicine there is...go figure...what medicine ISNT harmful during pregnancy, if I could I would never be on anything! I went from a healthy 27 year old, to a very unhealthy 27 year old with two kids under 2 and a whole lot of other problems arising. Every time I Think I am getting better...BAM its something else...its hard to think positive when you can't catch a break. Sorry If I am Debbie downer but I just cant get out of this funk.

Thank you all for your wonderful feedback! It sure is great talking to other Chronies especially because you know what I am going through. I love my husband and he tries but you just don't know unless you go through it.

 

[my little penguin]

My son was dx at age 7 and is 12 now
Had bad skin rashes with remicade
Found a great dermo who knew crohns and treatment as well as GI .
He switched off remicade after an allergic reaction and went on humira
That was almost three years ago.
Only minor skin issues so far

You can get to normal just takes a bit .
The beginning is always the hardest
Then you learn and things are so much easier

Good luck with the rash

Paging crohnsinct as well

 

[Justanothercp]

This is a tough road we all walk everyday. Keep in mind you are not alone. I try really hard to find the positive in everyday, but man that can be tough sometimes. I hope you feel better soon and your rash heals quickly.
I've had this disease about 20 years with lots of highs/lows and surgery and ER visits...
I take lots of Meds to keep it under control and have found the Paleo diet has been very helpful for me.
Wishing you the best.

 

[crohnsinct]

My 16 year old daughter has Crohn's. Although the anti tnf drugs are supposed to treat psoriasis, a portion of the population has a paradoxical response and actually get psoriasis. This happened to my daughter with Remicade. She got psoriasis over 70% of her body, including her privates! She was a horrible itchy mess. Her derm told us that changing anti tnf's, or dropping anti tnf's works in only 50% of the cases. She decided that her Crohn's was way worse (at one point she was in ICU) than the itching and stares etc so she stuck with Remicade.

True, sun exposure helps but also true you are supposed to limit sun exposure on anti tnf's.

True, some diet modification works...sugar, alcohol etc bad for psoriasis (haha not that my 16 year old is drinking...I don't think)

True, steroid creams work but you can only use them two weeks on, two weeks off because they thin the skin.

Absolutely do NOT do phototherapy on an anti tnf.

My daughter's GI added Methotrexate and it helped a lot. She still has a bad case of psoriasis...to the point that the kids in school refuse to sit at her desk because of the flakes of skin that she sheds so she has Clorox wipes and wipes her desk before she leaves...BUT...it has helped clear it up a lot. But caution...methotrexate use is not advised when trying to become pregnant!

Depression in psoriasis cases is very, very high...there are counselors who specialize in these cases. The National Psoriasis Foundation has a lot of resources for you to use. I encourage you to look them up! Lots of patient stories, a forum and the latest research, advice etc.

Stress also makes psoriasis worse so absolutely try yoga or any other form of exercise to help with that.

Moisturize, moisturize, moisturize....dry, itchy skin causes scratching and scratching causes damage and damage kicks in the inflammatory response and will only make the psoriasis worse.

Hugs hun! You are beautiful...I haven't even seen you and can tell that! You have so much love and life to give, do NOT let psoriasis take that away! It is more important that your Crohn's be controlled so you are healthy and present for your family.

 

[Lisa]

Lisa,

Thank you for understanding. They took a biopsy yesterday, and I wont know for sure for a couple weeks, but after my own diagnosis, I think you're right. I pray its not the case, and if so, sunlight helps? I'm asking because being on medicine like Humira, you're suppose to stay out of the sun...so how am I suppose to deal with this and also be on medicine? I am trying to get approved for the second time for Cimzia since I "failed Humira" Have you tried Cimzia or known someone who has and it worked? I also read that if you get a rash from one TNF blocker medicine, I'll likely get it from another?

I had a couple of biopsies taken the first time I had the outbreak of gutatte.....the results were inconclusive so don't be surprised if yours are too.

 

[EastCoast902]

I have had psoriasis for 40 yrs since my late teens, diagnosed with Crohns about 6 weeks ago. When I first developed the psoriasis I covered it up, wearing tights, long sleeves etc....then I said the heck with that!! It needs air to breathe and heal. If people have a problem with your "rash", that is their problem, not yours.

I am working through the new Crohns diagnosis, with 9mgs of Entocort (Doc erroneously ordered 18mgs- which I caught) and diet changes. I see a GI specialist next week who will treat what my GP and local Crohn's/scope surgeon diagnosed. I realize from the forum that I am at the beginning of what can be a tough journey- glad I am 50+, and not young starting this battle. Good luck!!