Has anyone had trouble with fistulas? I have had Crohn's longer than I can remember and my symptoms have always been on and off. Lately, they are quite on with the loss of my job and upcoming wedding plans!
I have been taking Remicaide for the past 2 years, which I was told would be "great" and help me stop all my other meds. Not true, as I've added it to everything else I've taken and nothing's changed!
My concern is, I look great on the outside, but have these personal issues most folks don't have symptoms with. I hate not being able to hit the beach when I want to, and I'm nervous about my upcoming marriage and being intimate, even though my husband does his best to understand.
Reply posted for hawaiigirl10.
Fissures and elephantine hemoirhoids....yes, Dr's say the H's have to stay, can't have surgery. Yes, I feel that it limits what I wear, if I go swimming <I used to swim daily and was in synchronized swimming in college> and has significantly impacted my sex life. Some things I don't do anymore, won't consider. After 10+ years of disease, we have had LOOOONNNNGGG stretches of abstinence. But we have to talk, communicate, love each other, be as affectionate as possible. It's not easy for me or my spouse. A lesser marriage would have crumbled under the strain. counseling helps. Individual AND family counseling. I don't feel sexy with a ravaged, pain filled, exhausted body. and when I do, it may not last, or the spouse may be absent. But we are making a new normal....
Reply posted for hawaiigirl10.
I have a perianal fistula which I think has now split into two openings. I was told Remicade would help but after seeing a surgeon, she informed me that because mine had been there so long, it was not going to do much. What I have found is that Remicade reduces the inflammation and the drainage. But stress counteracts the effects of the Remicade (a recent discovery I had after my exhusband resurfaced after being out of my son's life for 9 of the last 10 years). Haven't found a solution to the stress yet, but the Remicade should help reduce some of the other unpleasantness of the fistula.
Reply posted for hawaiigirl10.
I have had several fistulas and two surgeries. One fistula led to an abscess which ruptured. Another fistula was an ileocecal fistula, meaning it went from the ileum to the cecum or from one side of the abdomen to the other. It was quite painful--but only when it was active. I decided on the surgery for various reasons but it is possible it could have closed by itself.
@curleysue: A fistula is an abnormal connection or passageway between two organs, generally two sections of the bowel but unfortunately it could be anything. Not everyone who has crohn's gets fistulae. I gather I have been unusually prone to them.
@hawaiigirl10: Looking like everyone else on the outside but with a very different story on the inside is sort of the name of the game with IBD. Although not every guy is up to it, some men can accept the truth about your illness. If your husband-to-be is one of these (and it sounds like he may be) then your marriage should be a real comfort.
I think if you asked my husband, he would say the occasional accidents do
not matter much. What he hates about crohns disease is the fact that
he cannot help me when I am in pain.
Reply posted for hawaiigirl10.
What are fistula's? Is this something that I have to look forward to?
Reply posted for hawaiigirl10.
hey I'm actually concerned with the same thing right now- I've never been diagnosed with a true fistulia but my Crohn's is acting horrible and I've been on Remicade for almost a year and a half and it worked for a few months and now nothing. Also I'm allergic to steroids so we can't do that.
Hi, I'm a 21yr old female with Crohn's. I ....
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