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FM
Former Member
Hi! I am 32yrs age. I have had the large bowel and rectum removed due to UC. Following year the procedure for a j - pouch.2011

Since this procedures I have been suffering large amount of pain in my pelvis. I have been given heavy medication and had scans CTs and MRI's, to see what is causing the pain.
I have been advised from GP, gynaecology, THREE radiologists that I have a large amount of fluid in pelvis not cancer or infected, but is causing pressure and choking my other organs and the fluid should be drained as soon can be. A month ago, I had a sample of the fluid taken,( i know the radiologists aren't meant to say anything) but was advised that its not fluid its hematoemas)
In the mean time I have been sent to see surgeons who did my surgery.They believe that the fluid should be there and that the fluid won't cause the pain.Its now nerve pain and chronic pain and been told to followed it up with the pain manger people for chronic pain (its all in my head) no mention of the hematoemas(pockets of blood). My question is is this true? Please help, as i am getting ever so frustrated and feel like i am a merry go round and not getting and help. don't know what to think.
thanks,
aussiecountygirl

Replies sorted oldest to newest

vanessavyvanessavyMember
I have the same thing. 3 pockets of good amount of fluid. It is common for people with FAP and UC to get it after colon removal/pouch creation. I have been told the same thing, shouldn't cause any of the pain I have. Cleveland Clinic has done research on this and studies are posted in the journals. Sometimes they drain the fluid but it returns usually. There is no explanation for it. It is common to get it close to one year post op.
vanessavy
mgmt10mgmt10Member
I had a large amount of fluid collect in my pelvic area right after my first surgery only it was infected and I had to have it drained. They inserted a trans gluteal drain (thru my butt cheek) to reach the area and I had it draining for about six weeks. The doctor told me it could reoccur but it never happened again. That pain was awful. As soon as the fluid drained, it was instant relief.
mgmt10
FM Former Member
just wanted say thank you for you comments. i can now accept this. regarding the fluid did you guys also find weight gain?
The part i don't understand is, if I am still going roughly on a good day 15-20 times a day to the toilet. Even after 7 months later after having a reversal. taking 13 tablets of gastro stop to try and slow it down. I am eating all the right foods and exercising 45-hour a day that is walking up and down hills.
I am on a high protein diet. No i am not on steriods. it should be around the other way, i should be losing weight not putting it on. its got to the point i can't fit into my normal clothes. regarding my diet i have also tried for two weeks the high protein diet shakes. no result. Any ideas?
I have been advised regarding the fluid that its putting pressure against my j-pouch and causes it to want to empty, that's why i go so much. another reason why my doctor has advised me to have it drained and pushing up against my organs. but surgeons still believe it's not the cause. what do i do?
FM
L Lou_LouMember
Hi Aussie country girl,
I'm sorry to hear you are having a rough time Frowner I don't know to much bout the fluid thing as I never went through anything like that but all i can say is that it will get better! Your pouch and your body will adjust a fair bit over the years and the weight loss should come. I know it is frustrating, I've had my pouch for many years and I can't quite remember how often I was going in the begining but I do remember it took a little while my body and pouch to adjust. Keep up the bulking foods/diet and try and stay strong!I hope you start getting some answers and start feeling better soon! xo
L
Epic ScotsmanEpic ScotsmanMember
I had a somewhat similar problem after the first surgery. I had an abscess in my pelvic floor that produced a 9x9 cm fluid mass (so I basically had a baseball sitting in there). It was drained (the drain stayed in for about 3 weeks) and I had to spend a week in the hospital.

My problem was a streptococcus infection, so they had to pump me full of antibiotics and flush the thing out every few hours, but it did the trick. Everything's fine now. Hope this helps.
Epic Scotsman
R Rebe0505Member
hi wondering if one can have fluid retention after jpouch surgery(i had one step) creating an uneven belly lower belly..but cause no pain and if so how or what doctor do you go to to find out if it is fluid vs. readjusted fat pockets because of surgery,scar tissue or whatever.., ..is there a test one can take?

after my surgery i saw the unevenness and lack of flatness literary after i woke up from operation as i was hooked up to a drain of somekind...although swelling occurred of course after operation the uneven abs or soft lump persisted..i was bone thin after that for a long time in general.

i have recently been super good with diet and exercise and everywhere else on my abs i have little fat but that area remains the same perhaps less so but still there(accounting for bloat days )

bringing up the fluid thing so it made me wonder if it was a possibility..how would i ainquire about that?

thanks
rebe
R
R Rebe0505Member
hi again,rebe here forgot to mention..if i could find out it was possible fluid maybe it could be drained..i had a bikini cut when i had operation (so no long scar from under breast down and no indent or scar from a bag hook up because of one step)

am not a candidate for any kind of plastic surgery to correct because i suffer from chronic pouchitis unfortunately and dr. shen really does not approve for my situation to do so because of further problems i open myself up to..since presently i have my pouchitis contained more or less (no terrible pain and burning)with continual antibiotic s..

if it were fluid maybe it could just be drained without surgery required..just wondering..

rebe
R
vanessavyvanessavyMember
It is not an infection usually if it is that far out. It is common for it to build up actually. They can just go away. Just like it is common to have GYN related fluid due to a cyst bursting.

Every doctor is different but so far I am told it doesn't cause damage so leave it be, to remove it is surgery and that can just cause more issues.
vanessavy
FM Former Member
Thank you to all for your comments. Just wanted to give a update to what the latest is with the fluid department.Have been now advised by the surgeons that the fluid has now turned solid.Its not infected or cancer.From here they are not going to do anything as they believe draining would not help with the pain and so on. Next month the earliest i plan to see another surgeon. As,I do not understand.the reason for all the pain and weight gain. I exercise everyday and are still going to the toilet 15-20 times a day (on a good day)with a high protein diet and yet i can't fit into any of my clothes. Getting ever so frustrated, with the run around.Had the tyroid checked,thats fine. any ideas on how to lose it and whats with the solid fluid department?
FM
skn69skn69Member
Aussiegirl,
A lot of the doctors weigh the pros and cons of draining a liquid pocket...often it is not a one-time, one-day procedure but they need to put a drain in there and leave it for weeks in order for it to be effictive...that can open you up to infections of the worse sort and the last thing that we need is an infection...opening you up to remove a solid, non-malignant mass is even worse in their opinion...scar tissue, adhesions, complications, infections etc...so according to the theory they are not supposed to hurt...Which doesn't mean that they don't, just that they shouldn't...
My personal opinion...you may have one of those masses near an ovary or your pouch..one is effecting your out put (frequencey, urgency...) the other your hormone level that controls weight, mood etc...
Yes, some of them do self-absorb but it can take months or years...let us know what the other doc says...but honestly if it is cause disabilitating pain then something should be done...if it isn't then they may be able to give you something to help get rid of them without surgery.
Sharon
skn69
vanessavyvanessavyMember
Just a heads up on this. I just had a transvaginal ultrasound done since everyone swore it was an ovarian cyst and nothing to do with my surgery.

Well sort of true I guess. but I have no ovarian cysts now confirmed with the ultrasound. My Oncologist swore I needed this fluid drained and doctors kept saying no and said it was GYN related. The ultrasound showed no fluid actually, a CT scan doesn't know how to properly pick up what I had and it would show as fluid on a scan. The ultrasound showed it is my fallopian tube. Radiologist has to do the full report but she came in to explain on the screen what it was. I am in a lot of pain, and it was worse when they moved the wand to that area though so she might suggest removing that and the ovary. Never had this issue before so just weird now I do.
vanessavy
FM Former Member
thank you for everybody's support and comments.I have just seen a second surgeon. regarding the fluid and pain. They plan to do surgery.It looks like my pouch is not working as good as it should be.So, they are going to give my pouch a rest and i go back on the bag for year or so then down the track maybe go back to the pouch have to wait and see. With the pockets of fluid that will be removed and scar tissue. But until they open me back up, they will getter a better idea of whats really going on. thank you again.
FM
JPrideJPrideMember

Wow...3 years since your last post....Can't believe these rotten jerks gave you this run around. Please let me know what has occurred with you since then. I too went through run around. Was in incredible pain for years...Had my jpouch surgery 6yrs ago. But they just saw the fluid in abdomen 1yr ago when I was in for partial blockage from scar tissue wrapped around small intestine. Over this last year they said it was free fluid and would absorb, then said it was ovarian cycst and when I finally pressed for more tests and with help of new GI was confirmed it was sack fluid right next to jpouch. Surgeon sent me to interventional radiologist (all said they felt fluid not cause of pain) but they were able to remove fluid right then. No need for drain tube. I had tears of joy for 3 days solid and giggle every night before sleep still because I am beside myself how I ever lived with having such incredible pain for so long and now it was gone. Drained 2 months ago. I do still have ovarian cyst (blood filled) but just under 3cm so they won't touch it. I pressed my case about fluid because I google fluid sack next to pouch and found others who found relief by draining the fluid that was result of jpouch surgery. I hope this message finds you doing well. I was horrified to hear they were going to make you have bag for one year blaming pouch troubles and not just draining fluid to see if pain went away. Furious even that they would make you go through that before trying something as simple as draining fluid. Wow.

JPride

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