Executive Summary: 8-yr UC patient. Had colon removed Oct 2007; had J-Pouch constructed Mar 2008; have yet to have take down surgery performed due to series of complications...primarily collections of fluid in my abdomen (abscesses?) that require draining.

Originally, the cause of the fluid collections was due to a hole in my J-Pouch. Apparently, one of the staples did not remain closed. After the 3rd collection, Dr decided to simply leave drain in my abdomen until it could be confirmed there was no further leakages and structural integrity of pouch was sound. This confirmation process included a series of what appeared to be normal tests....dye tests...scans, visual inspections, etc. Finally, in July, 4 months after original J-Pouch creation, the final take-down was scheduled. Two days before the op the Dr calls and cancels the surgery stating there was still too much inflammation around the pouch. Why? Ah ha...that is the $64 question....yet to be answered.

Question-theory? I play golf....sorry...it's a bad habit. I play every weekend, and I feel fine all week long. However, the following two days after I play golf I have pain in my lower abdomen/pelvic area, and feel somewhat weak and nautious. The discomfort goes away by Tue-Wed and I repeat the process. I tell my Dr I believe the act of swinging a golf club is either contributing to my pouch not healing problems or the cause of it. He adamantly dismisses this theory...."highly unlikely" is his usual response. I counter....isn't it possible the twisting motion of the torso could be pulling on adhesions formed between my pouch and abdominal wall causing trauma? Again, emphatically "no" is the answer. I told him I intentionally hit a bucket of golf balls just before my last CT scan in July...5 days before my scheduled take down surgery...just so I could guarantee the Doc would see the impact of hitting golf balls. When the Doc called me, cancelling the surgery due to inflammation around my pouch, I was not surprised. The Doc stated the inflammation was simply an indication the pouch was still healing...4 months later. Just to placate me, we both agreed I wouldn't play golf for the month of August. Last weekend I hit a bucket of balls. Today, I'm typing this from a hospital bed, and have another drain coming out of my belly draining fluid from another pocket. Is this just coincidence or is there some medical facts to support my theory? Somehow, I think I am causing trauma in my pouch and in my abdomen, preventing the proper healing of the pouch via swinging a golf club. My Dr insists I'm crazy. All these J-Pouch forum unique terms that I am now becoming familiar with....such as cuffitis...are giving me cause for pause. I may be better off with just keeping my ileostomy. Several questions:
1) What are the potential causes of these fluid collection episodes?
2) Is there anything I can do to prevent there reoccurence?
3) Are they associated with the J-Pouch not healing?
4) Is this scenario fairly common?

DickC,

When I had step 1, I was told no vigorous physical activity including I was not even allowed to drive a car for 3 months, never mind a golf ball. I do recall some collection tubes in my abdomen after step 1. The last one came out probably five days after my surgery.

The act of swinging a golf club puts a lot of strain on the human body. I cite as an example Tiger Woods. All that torque in his swing caused knee injuries and a stress fracture in his leg, and although he won the US Open with those injuries in June, he was told after his post US Open surgery not to pick up a golf club again until 2009. He has had multiple knee surgeries due to the stress put on his knees by his natural swing. You are most likely a hacker in comparison to Woods, but your body is no less immune from the stress of your swing, if not moreso.

Your theory may or may not be correct, but if I were you I would stick the clubs in the bag until a couple months after takedown and let your body heal. Golf simply is not that important. And if Tiger Woods can bag his clubs for 7 months, I am sure you can do it for a shorter period of time.

This message has been edited. Last edited by: DJBHusky,

I had a couple of collections of fluid that they called Seromas. They can be painful. I did not need to have mine drained, although I would have preffered that since I had to live with the discomfort of the darn thing while it was eventually absorbed.
Physical activity can affect adhesions. Whether it's your golf swing or something else who knows for sure??
It may not be "trauma" per se but could be stretching of muscles, ligaments, adhesions...
I don't know but if it was me I would want to have my pouch scoped. Maybe you still have a small leak that hasn't been found yet.
It sounds like your surgeon has a pretty good sized ego...As if he is pooh poohing your thoughts...
Be more advocating! I certainly would want to know what is causing the fluid collections, especially before another surgery...Or maybe they will find out what is causing it thru the surgery....Hmmm
Julie

dickc,

Your story sounds so similar to mine. 37 yrs. of UC, unremitting flare since Oct. 07 (tried humira biologic not yet approved for UC--na da, nothing else 'medically' worked either), step 1 proctocolectomy May 08 at Mayo Clinic. 1 week out of Mayo, in local hospital for 1 week with pelvic abscess. 1 week out of same hospital, back in for 1 week with continued pelvic abscess issues even with CT guided drainage 'grenade' drain bulb put in first time around.

July 08, after the 6th. CT scan, finally a hole is found in the j-pouch. Along with a fistula sinus tract into the pelvic cavity. No explanation from Mayo surgeon as to why it's leaking. 'Known complication' is all I got out of him.

The bottom line is, I'm pursueing this issue to the Nth degree to get to the bottom of this. I, too, have been very active physically since my step 1 surgery. Just walking 3.5 miles every day is all that I do. Last Wednesday, just had the drain tube replaced with a larger diameter drain tube. Now, my daily output is back up to what it was two months ago.

I have pulled up a comprehensive study from Mayo that strongly validates that these types of complications that we have in common are not good as far as ultimate patient outcomes are concerned.

What I have been told by my new surgeon here is that Fistulas i.e. leaks, are very difficult to heal, i.e. close, whether on their own, thru surgical attempts at repair, or perhaps by using fibron glue plugs. As far as the commonality of this particular issue, I think that you and I are not the luckiest souls out there.

Hmmmm, very odd! Have you tried hitting balls in the middle of the week to see if you get the same reaction?

I would think if you were tugging on adhesions with your golf swing you'd be experiencing pain - not weakness and nausea. I'm actually wondering if maybe you're experiencing a bit of dehydration because of the exercise on the weekend and the weakness/nausea for a couple of days after. What are you drinking over the weekend? Are you stopping in at the 19th hole after the first 18? You could try really keeping hydrated with an electrolyte replacement fluid to see if that changes things. I really like Vitalyte - it works really well at replacing electrolytes and needed minerals. Water alone doesn't always cut it for hydration and drinking too much water can flush electrolytes and minerals from your system. If you have a loop ileostomy, it's easier to become dehydrated (then with an end ileostomy).

You had your surgery almost 6 months ago so I don't think exercise is going to hurt you. If your doctor isn't telling you to stop playing then it doesn't seem he has any problems with it.

I would think that the fluid collection episodes are completely separate from the post-golf incidents. I'm also assuming that the fluid collection is an abscess, right? I don't think there is anything you can do to prevent their reformation. Does your doctor have you on antibiotics? The fluid collection could be associated with the j-pouch not healing depending on where it's occurring. I don't think fluid collection or abscesses are fairly common but it is one of the more common of the complications one may encounter. Hopefully that made sense.

Being a support site, you're going to see many more problems here than occur in the general pouch or ostomy population. Some people experience cuffitis, pouchitis, abscesses, or fistulas but aren't the norm. If you think you'd like to stick with your ileostomy, then by all means do it. But if you're in pain or you're having to continually go to the hospital to have a drain put in, you need to get to the bottom of that before you make any decision I would think.

John - fistulas aren't the easiest things to heal but they can be healed. Do a search of fistula on this site and you'll find all sorts of information. And don't count your 'un'lucky stars just yet - you may just be taking a more circuitous route to get to a pouch you can get along with.

Welcome to the site both of you.

kathy

While I have never heard of this, your description sounds very suspicious. The way to put the final nail in that coffin is to have a CT when you have NOT golfed in a month or so and see if everything is fine. If not, then you know that the golfing was a red herring. Adhesions can be funny things, with a mind of their own. I would think that the exercise of golf would tend to stretch the adhesions and make them less problematic. But, I have learned that I should never say never.

Jan

Wow, color this internet-discussion-group neophyte impressed! To Jan Dollar, Kathy, John, Julie and DJB....sincerely appreciate your responsive and thorough responses. I think I've recd more concrete advice from you guys in one day than I've received from the medical industry in over a year. Allow me to try and briefly respond to each of your comments:
Julie: I had my pouch scoped in mid-July. This was one of the series of tests I alluded to designed to concur the stuctural integrity of the pouch. It reflected no leaks.
As far as my Dr having a big ego is concerned....I have found this attribute is not a very rare commodity in the health industry. I have yet to find a doctor who will freely admit he/she has made a mistake....it's almost like their lips are unable to form these words.
John: You've hit on my major concern. In other words, are these problems with pouch leaks/fistulas and abscess formations a "leading indicator" pointing to me having a fundamentally bad experience down the road, post take-down, since I appear to be already to be in a small circle of J-Pouch population?
Kathy: Good question, but yes, I don't have any pain/nausea during golf....only the next 24-48 hrs. I don't believe dehydration is an issue. I drink water and/or gatorade virtualy the entire 18 holes. And yes, I do indulge in a 19th hole beer! That's part of the package!
I also agree with you on your belief that golf and the fluid collection (abscesses) are mutually exclusive events. Dr has put me on antibiotics, but only during the fluid collection episodes. Once the fluid collection problem is under control, he takes me off the anti-biotics. I also wholeheartedly agree with your final thought....I need to get to the bottom of both of these issues before taking the next step....the take down.
Jan Dollar: Your point about having a CT scan after prolonged rest (no golf) is on target. Essentially, the CT scans I had last week, after being admitted to hospital may have served in that capacity. In fact, one of the questions I asked my Doc on Friday morning was....did he still see a lot inflammation around my pouch like he did in July. His answer was particularly vague....indicating I asked him a question he was not prepared to answer at that time. Didn't hear a "Yes," nor did I hear a "No." I would also like to agree with you on your perception that golf/exercise would tend to "stretch" adhesions....which would be a good thing...and not necessarily a bad thing.
Again, thanks to one and all....truly appreciate your insight. Collectively, you have helped me frame and focus my plan for my "way ahead."