Im new here!

im new here!

hi everyone! i am new here and hoping to get alittle advice and meet people going through what i am. i am in no way new to this disease! my story is too long to share every detail....to sum it up for you...i began having problems when i was 6 yrs old blood when i went to the bathroom and a horrible stomach ache everyday. my parents and i were told all kinds of things...food poisoning to i caught something rare from my grandparents farm animals!! eventually i was told it was UC. then in 1993 i became very sick and had to have sugery....they removed my entire colon had a reverse illistomy...bag for 3 months while i healed then put back together. i was told i was CURED no longer would i have UC!! not even 2 months later it started all over again...then i was told i was misdiagnosised and that i have crohns disease and will NEVER be cured!! since then i have had many different issues...fistulas, seton drains, abscesses, the list goes on! i have had 2 children and after my second was born i began getting more and more fistulas, well now i have been told i have hidradenitis suppurative a skin disease that is crohns related! i was hoping well hoping doesnt sound like the right word...was planning on starting remicade for my crohns and told that it helps my new skin disease as well but since this skin disease in in full force i have an open infection and cannot start the reimcade until we get this under control!!
i go to the cleveland clinic i have been going there since i was 7 yrs old, which by the way i am 31 now! it is a great place i have nothing bad to say about it in general. i am now just looking for some "easy" answers....my dr is great dont get me wrong its just shes not the best at answers my sometimes "silly" questions. its much easier to talk with and ask these questions with people who actually have the disease and not trying to treat it.
i would love to find someone who has crohns as well as hidradenitis, and if so what they do to feel better what kinds of meds do they take? to be honest i have not taken ANY meds for my disease in almost 7 years! my drs think this is crazy but it has worked fine for me. i have tried all the "piils" well maybe not all but believe me i have had my share of them...pentasa, steriods, and many many others. the first time i had seton drians put in i was terrified of them, now my dr doesnt bother with them anymore because after a day or two i actually take them out myself! i do not get any relief from a drian at all. it hurts more and irritates the skin around it so much that it is almost raw. my dr continued to replace them after i took them out now thank goodness she has finally stopped.
i have had 3 fistulas sugeryly removed and 1 has came back, i thought i had 2 more new ones but at my last visit found out these are not crohns related but its a new skin disease that is crohns related.
if anyone here has heard of or even has hidradenitis along with crohns please give me some advice on how you and your dr treat both? i was all ready to try remicade but now since i cannot with an open infection im starting to change my mind about it! i am on flagly & cipro right now for 10 days...well i have 3 left, i have stopped the flagly i was sick to my stomach unable to keep anything down taking both so dr told me to stop the flagly and contiune on with cipro....after completing these meds i'm due back to see if the infection is gone, if not then this "bump lump thing" will have to be removed before i can begin remicade.
please dont feel like you cant offer advice if you dont have the skin disease as well, i will glady take it and appreicate it so very much!! i have no idea where i got crohns from my sister is real big into our family history and NO ONE anywhere has it or anything remotely close!
thanks so much to anyone who took the time to read this and please feel free to talk to me!!!

Hi and welcome, Dragonfly! Sorry about everything you have had to deal with. I am sure, though you are not alone! I personally had never heard of your skin disease, so I looked it up in a 2000 Encyclopedia.

"Hidradenitis suppurativa (HS) is a chronic and often disabling disease characterized by intermittent periods of inflammation and abscess formation in apocrine sweat gland-containing skin... One study reported 24 out of 61 patients with HS were also diagnosed with CD, which predated the HS by an average of 3.5 years."

Hopefully, someone here can relate with you. In the meantime, be well!

Hi Dragonfly
Glad you have found us all here I too had never come across HS before: it sounds very nasty :-( And along with the Crohn's , what a double whammy!
There's no CD in my family either, but lots of other autoimmune diseases ( diabetes, arthritis etc ) and research suggests you are susceptible to any of them, not necessarily what other family suffer from.
I really hope the antibiotic will get the infection under control so you can get on with the longer term treatment.

Hi and welcome! I don't have any advice on hidradenitis, nor experience with Remicade. However, I know Remicade does well with clearing up fistulas. So, once you are well enough, I certainly think that is the treatment option to go with.

Check out the Remicade Club to learn more and ask others about their experience with the drug.

I have no advice, just wanted to welcome you!

I just read your bio, and you have had such a hard time with everything, Im so sorry. If I hear of anything I think could help you I will let you know! Good luck, and I have my fingers crossed for you!