Dr advises I get to an on/gyn ASAP

[Etanirealtor]

I saw my rheumatologist yesterday freaked me out a bit. He's a new dr for me because I felt my last one just kept saying you have crohns arthritis and basically it's in my GI drs hands where I felt It should be a team effort.. So I was referred by 2 of my Dr.'s to this new guy(loved him) he got me, he understood me like my other doctors have. He freaked me out a little bit by saying I am the worst crohns patient he has ever had (do I get a medal?)... Anyways one of my many issues is inflammation in the vaginal area. I feel like I'm carrying around a grapefruit everything is so swollen. His concern was internal inflammation because its near the bladder and it could end up being a real disaster. He didn't tell me what but I can imagine... Any one with similar story. He says my entire body is full of inflammation my biggest hope is Humira which I just took for the first time on Sunday (was on remicade for years). I am so fatigued, everything hurts in my body, I have a colostomy already, they think my crohns is around the stoma and presenting itself on the skin all around the area. I am just looking for some similar stories, I need some hope! :sign0085:

 

[UnXmas]

The other day my doctor was talking to me about how in women especially all the pelvic organs (bladder, bowel, uterus) are so close together that problems with one often result in problems in the others. A gynaecologist might be able to help you, if that's what your doctor's recommending. Doctors are usually very focussed on the area of their expertise, so if you haven't seen a gynaecologist recently, they may be able to help you with problems that your current doctors can't. Do you have any worries about seeing an ob/gyn or do you think it's a good idea (I wasn't sure from your post if that's something you're worried about)? What kind of symptoms are you getting besides the fatigue?

I don't think I have the same issues as you, but I've had a lot of gynaecological problems, and obviously bowel problems too (I've had a total colectomy and will soon be getting an ileostomy). Seeing a gynaecologist did help me to sort out problems that my colorectal surgeon couldn't. My urologist and colorectal surgeon work very closely together - they both even see me at the same time because all these medical problems are interconnected. If you can get your "team" of doctors to help you, each focussed on their specific area but communicating with each other so they can see the whole picture as well, they may be able to come up with treatments that your doctor wouldn't have thought of on his own. I definitely found it better when I had doctors working together, so I'd definitely recommend you to find doctors who will work together if you can.

 

[Etanirealtor]

We probably have more in common than you think. I have had rectal vaginal fistula that healed through remicade years later I had rectal fistulas that would not heal many attempts of surgeries/procedures and no luck. Had a temp ostomy to heal it and thought it was healed via MRI and exam under anesthesia I could have been but after reversal it came back within a week. It seems my disease had settled there.. I was on remicade still during all of this as well! Obviously frustrated but I realized I had quality of life back with my colostomy. So decided to go permenant. It's been a mess ever since. Problem now is apparently inflammation EVERYWHERE and that is what my rheumatologist is concerned because I complained about having inflammation in the vaginal area so I did not realize that it could go further to bladder etc.. And cause serious issues. All these years and I'm still learning how awful this disease can be and it's not just GI issues! I have to call doctor on Monday because I never heard back from obgyn he wants me to see (keeping it in the family/team) which makes sense and what I want. Do you have fistulas is that what is causing your problems?

 

[UnXmas]

No, I don't have fistulas, I've had recurring pelvic prolapses. Having so much diarrhoea from Crohn's makes the pelvic and rectal prolapses a nightmare, and vice versa. My urologist reckons that once I've had the ileostomy my bladder should improve as it won't be being affected by my bowel problems. You're right that Crohn's affects so many things you wouldn't think of as directly related to the GI tract.

I hope you get the appointment sorted with ob/gyn. :hug:

 

[PsychoJane]

they think my crohns is around the stoma and presenting itself on the skin all around the area.

Do they think some fistula are forming around your stoma?

 

[Etanirealtor]

No just very inflamed skin, not due to leakage. I do have leakage because the wounds weep and cause appliance to unadhere then it will start leaking