Graphic help!all you ladies out there!

[CROHNS SUFFERER]

graphic help!all you ladies out there!

hi all

need advice

ive been in remission since october, was admitted in november, they said it was dilated bowel loops, but the surgeons didn't want to touch me.

but my big problem right now is my vagina/bladder.

ive been incontinant for 5 days now, pee burns like acid and ive now got blisters and ulcers down there( look like what i seen in my colon on my colonoscopy), then last nite my bowel joined in, had Diaherrea and alot of blood. had more blood today but normal stool.

ive got a gi appt on friday, but wondered if any other chronnie ladies suffer in this way? ive had constant bladder problems for over a year, but they've ruled out infections and fistulas( although im not convinced about the fistula).

im on pentasa, azathiaprine, infliximab, omega 3 and a multi vit.

HELP

 

[Peaches]

Well, I have not had anything like that. I tell ya - I might just make an appointment with your OBGYN so she/he can maybe take a peek? Might be the wrong suggestion - but seems they know more about female plumbing than a GI doc would and might know why you are incontinent. Has that ever happened to you before? I have never heard of blisters/ulcers there from Crohn's - but I am sure I haven't heard everything by a long shot.

It sounds miserable - hope you can get it all figured out soon! Good luck!!

 

[CROHNS SUFFERER]

i spoke to the gi for advice and they said it sounded like my crohns, when i was flaring really bad, this kept happening, but without the blisters, they said it was due to my inflamed small bowel lying on my bladder. so it had sort of passed on the inflamation? i know... nothing with my crohns seems blinking normal!

 

[Peaches]

No, that makes sense. I think it is the same as when some of us get pain under our ribs when our bowels are inflammed you know?

 

[imisspopcorn]

Sorry, that must be miserable!! I agree with Peaches. Call your OB/GYN and see if you can get an urgent appointment. They can culture the blisters to rule out infections.

 

[Guest1]

You poor thing! That sounds horrible. Agree with the other ladies -- I'd definitely see what your OBGYN has to say.

 

[CROHNS SUFFERER]

thanks everyone, ive never seen a gynae before, so i'll have to ask for a referal

 

[pain in the butt]

Ive had many bladder issues not do to crohns i agree with the other girls OB/gyn and a urologist might help. hope you find a good caring doctor .

 

[Absentminded]

I've had almost the same problem since August. The burning pain when I go to the loo is the worst. I've had four courses of antibiotics, none of which have worked, and all my samples have come back completly clear from any infections . I went to see my GP today and she suggested it might be due to my crohn's being active, because the bladder and the bowel are close together the immflammation can pass to the bladder. She's put me on some medication usually used for overactive bladder problems to see if that works. I hope you find some answers soon!

 

[CROHNS SUFFERER]

thanks everyone. ive got my appt tomorrow so im just about bearing up. im only 23, but feel like ive got the body of a 90 year old. im always clear for infections and antibiotics dont work either

 

[Peaches]

I'm sorry CS - I am glad that you were able to get an appointment though. I would want my girlie parts in tip top working order you know? Better to get it seen rather than waiting - especially with the incontinence thing - you are way too young to have that! Good luck and let us know ok? I think this is the first one of these I've seen since I've been here - so it is good information for the next person suffering from the same thing (as in - THANKS for be willing to share )

 

[katiesue1506]

Yes, glad you got an appointment. The OB/GYN appointments are crucial to people with Crohn's Disease. Not only because of the inflammation and hormones but also if you are immunosuppressed. ALWAYS always get your yearlies... always. I started at 18 because my mom made me and I'm glad I did... I've got a normal healthy friend who won't go cuz shes scared and because she has body image issues. I think its dumb. Going to the Gyno is the easiest way to prevent and fix cervical or ovarian cancer. Okay... done with my PSA

 

[uab grad student]

I agree with everyone else about seeing an OB/GYN for their opinion...even if the bladder issues are due to Crohn's inflammation, it doesn't really explain the lesions down there. Also, being immune suppressed might make it more likely to get an infection you wouldn't have before. Best of luck

 

[CROHNS SUFFERER]

just an update everyone. thanks for all the support, its was a really embarrassing appt but at least its over with now.

i went and had an emergency with my gi nurse who is lovely, unfortunately, the appt took place in the packed out endoscopy unit, where everyone was coming round from colonoscopys! not very comfy or private.lol

gave her an in depth run down of everything thats been going on and she wasn't aware that id been in hospital in nov. she also examined me.

she said what i was feeling down there wasn't lessions or ulcers. but its corroded( her words not mine), so its all pretty raw.

as the last time i had this incontinance problem was when my small bowel crohns was flaring, she wished to speak to a doctor.

tested my urine (clear of infection, and everything, no protein either) and took blood to check my crp. as my bowel habits change from normalish to pure diaherrea throughout the day and leakage. she wasn't happy with this.

she wished to treat me with antibiotics as if i had a urine infection, but the consultant came back and said that they believed my bladder was inflammed due to my small bowel beginning to flare. also they believe that due to infliximab, that i may be developing alot of scar tissue due to it( as my whole colon and a good section of my small bowel, were totally covered in ulcers, fissures and tags) they believe the bleeding is coming from anal tags also.

so basically i had a choice of prednisilone suppositries or enemas, i chose the suppositries. also put me on ciprofloxin. also as i had to cancel my infliximab last week. they want me to get this asap as they think im going to go downhill quickly otherwise.

nurse also suggested i had a touch of ibs( i dont believe i do, as my bowels dont corelate to my moods, tension etc). this idea was floated when i was 14, when they didn't do colonoscopies or anything to confirm crohns. i dont think i have this

ive to see how i go after 3 days, if no improvement, then im back on full blown pred, which i dont want, as i already spent 6 mnths last year on it and they couldn't get me off and had to up the azathiaprine gradually and maintain a level of steroids for ages.

i was pretty upset last night. im just trying really hard to maintain a normal lifestyle. its so bloody hard! ive got a 5 year old and my boyfriend works away 8 mnths of the year. i work full time and am on disciplinary as i had 8 weeks off due to crohns(2 different spells) last year. feel like im starting to sink again, and the though of the suppositories is giving me the heave.

god lifes s**t sometimes. x

 

[Peaches]

Oh my goodness CS, I'm so sorry! I see that you are on Infliximab every 4 weeks - may I ask how long you have been on it and at what dosage? I am also wondering if they have checked your blood levels for the Infliximab just prior to your infusion. The reason I ask is they have found mine to be very low just before my next infusion (meaning I had "eaten up" what meds I had been given a bit too early, so I didn't have much circulating - which was why I was feeling like sh*t!). And your infusions are so close together! I'm just wondering if you are losing response to it and need to go to another one like Humira or Cimzia? Dern....I know you must be frazzled. If you don't turn around pretty quickly with the Cipro and another infusion - I'd hop on the Pred to try and get things quiet and discuss other drug options with them. Hope you feel better soon!

 

[CROHNS SUFFERER]

just updated my signature peaches as it was out of date. i get infliximab every 8 weeks, but feel it wears off after 6 weeks, so the nurse is gonna see if the nhs will pay for me to have it every 6 weeks

 

[imisspopcorn]

Sorry you are feeling so crappy. I hope this gets things going in the right direction. Feel better.

 

[Sue-2009]

I hope you find some relief......My crohns is weird too! Like all of us! Good luck swith that!!!

 

[cheeky]

i'm sorry you're going through that... i have crohn's but i've never experienced anything like the vaginal/bladder symptoms you describe

must be unbearable... hope you get the help you need and feel better soon!

take care

 

[CROHNS SUFFERER]

hi everyone.

im away to see the head gastro consultant at my hospital today. was sent home from work yesterday. in a hellluva lot of pain from my bowel, stomach is going rock hard by night time, feel xtremely sick all the time and eating anything that isn;t nush results in agony,

they're not willing to go ahead with infliximab as they believe im obstructing.

feel really bad and soo tired. not doing well and no longer tolerating suppositries

 

[Sue-2009]

Keep us informed.....S

 

[kristyn]

My GI doc recently sent me to my OBGYN when they found fibroid tumors in my uterous blaming the pain on that rather than my sigmoid fistula. My OBGYN said no way were the fibroids causing the pain and sent me back to my GI doc. My GI doc always says "let's see how you are feeling after you next Remicade". So- no answers just pain and suffering.