Ok I'm feeling like a right grouch on here these past couple of mo the so sorry for that. I've always had bad periods I'd faint and everything since The hour and day I got them. I managed to struggle through. However since all my ops they are just getting worse and my jpouch feels like a snake all coiled up and ready to attack!!! It's really hurting in the bum area to empty my pouch. It feels like my staples could come out so afraid of putting pressure. I've almost not made it to the bathroom and this obviously brings ups old anxieties. I can't eat because the smell of food turns my stomach. It starts the week before my period and my period last 7/ 10 days so that stays for the guts of 6 days of my period. I also know that I have bloody BMs from maybe a week and a half before my periods. I now can't use tampons as they really hurt and I can only stick it out for about 5 mins before taking it out. My general doctor is talking about the pill but here's the thing I don't really want to go on it. I've had enough of medication that effects hormones etc. I'm also 27 and even though not in a relationship I don't want to take anything that would someday affect the chances of having children. I reckon I've enough going on that could possibly affect those chances. Has any one else experienced this. I just feel like everything inside me is going to explode. Thanks for all the help and support
Replies sorted oldest to newest
My periods are nowhere near as unpleasant as yours, and I've used birth control pills to skip most of my periods since I was 19 (seven years now). There's no evidence that hormonal BCP affects future fertility. If you decide you are willing to try it, make sure to ask for a low estrogen pill (indicated for people with IBD).
Thanks Liz I think its more me not wanting to go on more medication than anything else. Good to know the type of pill though. Things thankfully settled a bit today but it just gets me down sometimes that something most women deal ok with I end up in bed for nearly two weeks or lying on the couch. I liked it when I had none lol I try and say its a good thing my body is finally getting healthy again but sometimes I'd really like to not have them.
Grace,
So sorry that period hell is a real hell for you...I had bad periods (felt like my uterus was trying to fall out of my body) but never as bad as what you describe...Honestly, a lot of pouchers suffer from severe periods once they get their pouch...the period effects the pouch terribly and exacerbates the pain and discomfort both in the pouch and the body...I used to get diarreah and nausea but managed it with anitinflamatories...you seem to be an extreme case and could very well benefit from either a low dose pill or if you don't want to be 'taking meds' but are not against them totally they can do the hormone implants...They implant a tiny little tube-like thing under the skin and you are good to go for 2yrs..
The other thing that your story brings to mind is the fact that your periods are so extreme that maybe something is going on in there, like cysts or polyps or endometriosis (sp?)....
You should, at the very least, talk with your obs-gyn to make sure that nothing else is going on in there and see if she doesn't have a better solution for you than suffering every month...
One of my best friend suffered like you do and they did a DNC and removed a few bleeding polyps and other matter...the difference was amazing...no more monthly hemmorages, no more crippling periods...she still gets them but they last 3-5 days instead of 10-12.
Some thing to think about, maybe
Sharon
So sorry that period hell is a real hell for you...I had bad periods (felt like my uterus was trying to fall out of my body) but never as bad as what you describe...Honestly, a lot of pouchers suffer from severe periods once they get their pouch...the period effects the pouch terribly and exacerbates the pain and discomfort both in the pouch and the body...I used to get diarreah and nausea but managed it with anitinflamatories...you seem to be an extreme case and could very well benefit from either a low dose pill or if you don't want to be 'taking meds' but are not against them totally they can do the hormone implants...They implant a tiny little tube-like thing under the skin and you are good to go for 2yrs..
The other thing that your story brings to mind is the fact that your periods are so extreme that maybe something is going on in there, like cysts or polyps or endometriosis (sp?)....
You should, at the very least, talk with your obs-gyn to make sure that nothing else is going on in there and see if she doesn't have a better solution for you than suffering every month...
One of my best friend suffered like you do and they did a DNC and removed a few bleeding polyps and other matter...the difference was amazing...no more monthly hemmorages, no more crippling periods...she still gets them but they last 3-5 days instead of 10-12.
Some thing to think about, maybe
Sharon
Thanks Sharon. It's good to know about your friend maybe something I need to look into. Could adhesions from surgery cause it? I get how the pouch could be more sensitive sometimes it feels like a flare up when I have my period and I put that down to all that's going on in there however Those issues combined with the pain sickness dizziness etc all together its hard to handle. Part of me has "weight issues" I hate the weight that medication can pile on me and I'm still losing steroid weight the thought of taking something that would change all of that again does nt appeal to me. If say it is adhesions would they do anything about it or just leave it? Sometimes when I have my period I wish I had my stoma back yes I had the extreme cramps but I didn't have to run to the toilet in desperation. I'm bit better today and for the first time all week managed to get out and take my dog for short stroll. Dogs are life savers honestly my dog does so much for me she doesn't even realise it. The short stroll along a beach front helped clear my head. When I get an appointment with ob/gyny is there anything I should be asking or just explain things? Can any of their examinations do damage to my jpouch im worried about that part. I find VSL#3 helps during my periods I take two twice a day anyways as I get very bloated and cramped stomach.
A more positive Grace
A more positive Grace
Grace,
Yes, adhesions can be the culprit or at least partially and there are probably a dozen other reasons that I cannot even imagine...but I honest believe that the mini pill or other hormone of substitution should not pack on the weight but should actually help you to live better and with much less pain..my friend had just completed a 900calorie diet and lost 20lbs when she had to have the DnC and go onto the pill for a few months (doctor wanted to give her body and ovaries a break) and she did not gain a pound..so, I wouldn't allow that to stop you from getting help.
As for what to say to the obs-gyn? Exactly what you wrote here plus your medical files if possible so that she understands your new anatomy and the complications that your body has survived.
Hope that you feel better soon.
Sharon
Yes, adhesions can be the culprit or at least partially and there are probably a dozen other reasons that I cannot even imagine...but I honest believe that the mini pill or other hormone of substitution should not pack on the weight but should actually help you to live better and with much less pain..my friend had just completed a 900calorie diet and lost 20lbs when she had to have the DnC and go onto the pill for a few months (doctor wanted to give her body and ovaries a break) and she did not gain a pound..so, I wouldn't allow that to stop you from getting help.
As for what to say to the obs-gyn? Exactly what you wrote here plus your medical files if possible so that she understands your new anatomy and the complications that your body has survived.
Hope that you feel better soon.
Sharon
Grace, I'm there with you regarding rough periods. And all of a sudden in the last few months, my cycles are now every 21 days and still last for 7 days. I feel like as soon as it ends, I'm starting up again. I was just at my gyne for my annual check up and she thinks I'm crazy to not do something to help myself, but I am with you, and not interested in more medication. She's really pushing the Mirena IUD (however that's spelled), and says it will help everything. I'm considering it at this point especially with my low iron. She pulled some blood to check my horomone levels as well. It's a tough choice so we'll see!
I'm so glad I'm not the only one. I always get my bloods checked around my periods and my iron while low isn't low enough for a transfusion so I deal with extra tiredness ontop of the usual tiredness. It's just frustrating that all the medication effects your hormones. I'm glad I'm not the only one trying to avoid medication. Im lucky that my periods haven't one back into the almos twice a month stage it used to be in and comes once a month however with the build up the week before it feels like its twice a month. Ok think I need to get an appointment I'm seeing my doctor on Friday so will enquire he was on about the implant but I really don't want to get that with me having to get drips etc and having issues finding veins. Thanks for all your help everyone and thanks for making me feel not so alone it was really getting to me this month I thought they'd get better but they are just getting worse.
grace totally understand your situation and concerns. Ask about the Mirena. They can put that in.. in office. You don't need knocked out or iv's to have it put in or taken out. Mirena works for A LOT of people.
They tried it on me.. had it in for five months. But I was an unusual case.. as usual... and it didn't work for me. But it is worth a try as it really is not invasive medication wise like other options.
also have you been checked for any other problems..polyps, endometriosis. I had similar situation to yours and they did transvaginal ultrasound, found polyps. Ended up with hysterscopy, D&C, and polyp removal surgery. It helped reduced the bleeding somewhat after polyps were removed.
Seems like you need a full gyne checkup first.
They tried it on me.. had it in for five months. But I was an unusual case.. as usual... and it didn't work for me. But it is worth a try as it really is not invasive medication wise like other options.
also have you been checked for any other problems..polyps, endometriosis. I had similar situation to yours and they did transvaginal ultrasound, found polyps. Ended up with hysterscopy, D&C, and polyp removal surgery. It helped reduced the bleeding somewhat after polyps were removed.
Seems like you need a full gyne checkup first.
No Liz I haven't been checked for any of that I keep asking about these things just told about medication to take so maybe I need to be more stricter part of me is worried due to my jpouch but I'm sure they couldn't do any harm if they are properly informed. I'm glad to know that this helped you and I'm sorry on top of everything you also had to I through other things. It's just so good to hear that others had issues. I've been feeling quite on my own and I feel stupid not being able to deal with my periods considering everything else that I've been through but its just like a flare up nearly which obviously for me can't happen. Thankyou all for your advise and reassurance it means a lot.