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35 replies

Weightlifting and Male Hormone Replacement

donn369donn369Member
At my annual check-up at the Cleveland Clinic my doctor told me that I shouldn't be lifting over 25 pounds because I could possibly burst my pouch. He also told me that I should not be using Advil, Aleve or other anti-inflamatory drugs and that I shouldn't be doing male hormone replacement like testosterone or HGH. Anybody have any experience or comments on this?
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skn69skn69Member
Donn,
I am a girl and a k poucher but for me, a pouch is a pouch...you didn't tell how old you are, in what physical condition you were/are and what your general healthy is like so those are also factors...
I used to lift, a lot (was a powerlifter pre-pouch but continued lifting afterward, just not as high weights)...as a 'kid' I could lift, push, pull and pretty much do whatever I wanted with my body...but these last 10 years I ended up discovering that my body has limits and that hernias are not my friend...
30 years ago, post pouch creation I thought that I was indestructable but I have since realised that the human body has limits and if you love your pouch then you do not over do it for any reason...I did stairmast 6 weeks post pouch revision...and split, herniated and generally destroyed 6hrs worth of surgery. Waited 8 weeks the next time with the same result. It took a lot of pain and surgery to wrap my brain around the fact that I will never be able to do what I did before and that I shouldn't either.
So, if your doctors says no, then it is no. There are other ways to keep fit, get a hard body and stay healthy without putting your pouch and health in peril.
Sharon
donn369donn369Member
Thanks for your response. I got my pouch 16 years ago at the Cleveland Clinic and have been working out pretty steadily since then. I am currently 53 years old and have been working out with a personal trainer for about a year. I've gotten into the best shape of my life and I feel better than I have in a long time. I also got onto a male hormone replacement treatment program that is medically supervised about 2 years ago. I get that my body has limitations and I certainly don't want to do any serious damage to my pouch because that would be devastating. My doctor told me that he had some patients that ruptured their pouch while lifting weights, so I guess that I have to take that seriously. It's just really hard trying to find a balance that works.
skn69skn69Member
Being an optimist I always believed that I was indestructable...wrong.
We are the same age (will be 53 this yr) but guys a different than girls, you seem to fall apart less than we do Big Grin probably because you don't have to deal with the major hormone changes of menopause...But still, be careful and survey your body and its responses...What is the goal here? To be storng and healthy, not to rip things open or apart...The game is the long term with us..And no matter what anyone says, I much prefer to baby my pouch than to have to have more surgery...
Sharon
J Jeff1959Member
I am also 53 and am an avid weightlifter and compete in bench press meets. I had my surgery at Cleveland Clinic and my doctor has never discussed the possibility of my pouch rupturing and he is aware of my weightlifting. Do you know if there could be anything that could predispose someone to the risk of rupturing their pouch or if everyone is at the same risk. I have been lifting heavy for two and a half years with my pouch with no problems and my follow up exams and scopes have not shown any problems.
Jan DollarJan DollarModerator, RN, retired
I would suspect that if you had any pouch ischemia (reduced blood flow) and/or did not build up your muscles gradually, so that you had higher pressures internally without good support, you'd be at a higher risk.

I imagine that even without this surgery, there is risk of organ rupture if you are not careful!

Jan Smiler
MH mad hatterMember
I lift weights 4-5 days a week and have never had any issues. Regardless if you have a pouch or a healthy Colin you can run the risk of injury if you lift too much weight. My surgeon had me take it easy for the first six months and then told to gradually get back into it so as not to put much strain on incision site and internal plumbing. The old adage still applies in that you have to listen to your own body and do things in moderation
donn369donn369Member
I went back to the Cleveland Clinic today for a one-year follow-up. I did not take my doctor's suggestion to not lift over 25 pounds and I continued the hormone treatment, which is basically testosterone. The pouch is doing worse than last year and I received an even sterner admonishment to cut it out. Working out is such a major part of my life and life-style that I am major league depressed about the proposition of not weightlifting anymore. Anybody have any encouragement or suggestions?
P PoucherInTOMember
Hi Donn369

My only thought is that the guys from Cleveland know what they are talking about and if you are having pouch issues, maybe go a bit easier on yourself.

What it comes down to is if the weightlifting and hormones cost you your jpouch, requiring it to be removed one day, would you be ok with that? It may never come down to that, but sometimes you need to consider the worst case scenerio and think about how you would feel if that actually came true.

I'm all for living the life you want, just know there are consequences (good and bad) to everything.
Jan DollarJan DollarModerator, RN, retired
I believe you can perform strength training and reps with light weights for good health and body sculpting, without the exogenous testosterone and extreme lifting.

But, if you really want the body building culture, you have to be willing to accept responsibility for the risks. It is your choice to make. As frustrating as it is for you to be told to stop, it is also frustrating for your doctor to have his advice ignored.

Jan Smiler
donn369donn369Member
So I send an e-mail to Dr. Shen requesting a phone conference to discuss my situation. I don't remember anything from my procedure because of the sedation. He sends back my biopsy report and a short note to once again "no lifting anything over 25 lbs." I have many questions and concerns that only he can answer. Is it too much to expect this doctor or any doctor to give a patient a phone call to discuss their situation?
Jan DollarJan DollarModerator, RN, retired
I don't think that is an unreasonable request.

Would it be possible to set up a "telephone appointment"? My HMO does it, where they have an appointment time for the doctor to call you. It is perfect for when you need to touch base and discuss a few things, without needing an examination. Emails are usually too brief, so for me they are mostly to ask about meds, labs, etc.
donn369donn369Member
Thank you everyone for your responses and support. It's so easy to fall into a state of "denial" about my/our situation, especially 19 years or so after the surgery. I feel frustrated with the lack of personal communication with my doctor. It wasn't always like this. In the past I would have the pouch scope done and then meet with the doctor in his office after I recovered from the sedation. Now it seems more like an assembly line. But I agree that I have to take this seriously and consider the consequences of not following the doctor's instructions. I have to find another way to exercise and stay fit without putting my pouch in jeopardy. But I don't know what is acceptable and what isn't. I'm just hoping that I can get more feedback than "don't lift anything over 25 pounds for the rest of your life." I'm also curious about the experiences of others who have had their pouch over 15-20+ years. Has anyone had a second pouch created to replace one that failed? My doctor is telling me that is not possible.
Jan DollarJan DollarModerator, RN, retired
Yes, people do have new pouches constructed after failure of their pouch. However, these things are determined on an individual basis.

While the 25 pound limit seems rather arbitrary and extreme, Dr. Shen has had more experience with j-pouches and their problems than practically anyone. Plus, we each have our own histories to deal with, and have different things going on. For example, perhaps your pouch was created with some tension at the suture line, making it more susceptible to weakness and rupture. Or, maybe the blood supply is somewhat compromised, causing chronic pouchitis, also weakening the pouch.

Many of us often lift more than 25 pounds, but usually not repetitively. I am not sure how the extra hormones factor in, but Dr. Shen does know what he is talking about. If you continue on your path you probably are not guaranteed to have a pouch rupture, but are increasing your risk. Sure, it is important to feel good about yourself, but it probably is possible to find a compromise that works for you.

So, your choices are to have some follow up with him, or change doctors to someone who has more time to explain everything to your satisfaction. Having the best sometimes means trading off the personal attention.

If it means anything, my doctors routinely just give short responses to my emails. That is why I am very concise and ask specific questions. They don't write long narratives.

Jan Smiler
donn369donn369Member
I had my appointment today with the pouch guru, Dr. Shen. He really is a great doctor and a great guy. He told me that there are several things that can affect a man's pouch in a negative way; being overweight, especially with a "beer belly," straining the abdominal muscles too much with intense exercise and of course, any other kind of abdominal surgery such as for a hernia. He says that the pouch thrives with good blood circulation to it and it dies without that. This is why he recommends against hormone replacement treatment, i.e. testosterone because it has been shown to thicken the blood and reduce blood flow to the pouch. I agreed to discontinue the hormone treatments and to modify my workout routines to lighter weights with more reps and stay away from direct abdominal stress. He also recommended that I continue playing basketball as a way to stay in shape. We discussed diet for j-pouchers and he recommended a high protein, low sugar, low fiber diet with complex carbs being OK. I feel so much better after meeting with him and I will go back for a follow-up in 4-6 months. Thanks to everyone for your support and feedback. As a good friend once told me, "Either we all hang together or we will all hang separately."
EricEricMember
Not sure if you'll see this as it's an old post (sorry, just noticed it now), but I have to say, I can't believe the doctor put a weight restriction on you. It's total understandable post op, but you've had you pouch for 16 years, the sky should be the limit. I had my j pouch for over 20 years, and never once had limitations place on me. I could bench press 180lbs without batting an eye, and without any pain or problems at all. I cycled countless marathons, and at one pint, worked out, for two hours a day, including weights and cardio, every day, for years, and never had a problem. Maybe it's because I slowly worked my way up to that point. I have one simple rule, that I use to this day (now have an end ileostomy). I always start off any new exercise routine really slowly, and spend months, sometimes years, working up to a point where I can do pretty much anything. And most importantly, if it really hurts, I stop immediately, and see my doctor. A little pain is perfectly normal in any exercise routine, but you know your own body better then anyone. If you're experiencing unusual pain, don't push it, or you'll do more hard then good.

As for the Testosterone therapy, I've been on it now for the past 5 years (I get an injection every two weeks, and check my levels once a month), and touch wood, I've had zero problems with it. I, like most GI patients, thrive on routine. If I stick to the same schedule every day, I'm just fine. However, if I deviate from it (ie not eat/sleeping/taking my meds at the same time each day) I feel it, and most times, will get really sick.mas long as I stay consistent, I'm just fine, and I know you will be too, good luck, and keep us posted,

Cheers,
Eric Big Grin
skn69skn69Member
Eric,
You are the exception, not the rule...you know how to take things slowly, work your way up and not over do...most people do not have your self control...most act like 10yr olds at the entrance of Disneyland....they want to do everything, Now. They do not know that building up slowly means month by month incremental increases in weight and not weekly.
I am one of the unfortunate enthusiasts that goes gung-ho and then has to put the breaks on slowly (I am a self admitted workout addict).
I have learned to 'slow' things down a bit but still overdo it.
369, your decision sounds reasonable. You need to be careful...having a pouch for 16yrs does not make you bullit-proof. It makes you more fragile than 10yrs ago. The older you get the more you need to be careful, not less.
Shen's 25lb rule has nothing to do with you in particular but pouchers in general. He knows that most people won't pop their pouches at 25lbs or even 50lbs but 1 in 100 will. (or 1 in 1000, I have no idea what the statistics are). So it is the generality rule that matters. Better safe than sorry.
If you don't warn them, then when the unlucky 1 in 100 pops or prolapses or herniates his pouch or abdomen he screams and yells that no one warned him not to. And he is right. So consider yourself warned....on the other hand, you can in all probability enjoy your sport for years without a burp and then one day find your pouch hanging out your butt for no reason whatsoever. It won't be the 'one time that you lifted too much' but the accumulation of 1000xs that you lifted just a bit too much.
It wears. So be safe and be careful.
Sharon
K KobeMember
OMG....I've been lifting heavy weights for the past 6 months and I never knew about this?! Is is true what the doctor said? I mean, is there any scientific evidence to support this?

I have been lifting over 100kgs (220lbs?) for my deadlifts but haven't noticed any problems with my pouch at all. *sigh* I'm getting worried now. My next session I'm gonna have this on the back of my mind the entire time Frowner
skn69skn69Member
Kobe,
Like I said, not everyone will hurt, get hurt, suffer of destroy their pouch...but 1 out of 100 or 1000 Might. That means that there are precautions to take...wear that weight belt...it exists for a reason, to hold things in and up and to prevent (or help to prevent) hernias...take the necessary precautions, do not "work through the pain" but stop if it hurts, you feel undo pressure in the region or feel like something has torn or ripped...I am NOT saying that it will happen but that it can be more frequent in us than in other populations (read: people who have never had abdominal surgery or pouches).
Keep yourself hydrated too...although form what I remember that is not a problem for you...but do not forget that hydration is not just water but also mineral salts so get something that can replenish that too.
And have fun...you are doing fine so keep it up!
Sharon
D DaleerMember
I have lifted over 700 pounds with a j-pouch and have lifted heavy for 8 years with a j-pouch. These days I rarely lift - maybe once a week but I can still lift very heavy weights. A couple nights ago I was shrugging 550 for sets of 20 reps with no belt - I'm sure with a belt I could have gone into the 600's no problem. These days I like to run so the heavy lifting isn't a priority but I'm almost 42 and still have no problem doing it. I'm not saying that everyone's j-pouch is indestructible - I'm just saying that I've pushed myself to the point of my head being about to pop off (sometimes with a lifting belt cranked on as tight as I can get it) frequently for almost 10 years and have never had a j-pouch related problem - so I'm guessing they're tougher in that respect than people think.
Last edited by Daleer
skn69skn69Member
Daleer,
In my youth (about 35yrs ago) I lifted competitively (power lifter) in Toronto (JCC team) with a team and pushed things hard...I probably also contributed to some gracillis muscle flap destruction by doing so.
When you say that you lifted so much that you felt like you were going to blow off your head...well that sends warning bells-a-ringing.
There is a tipping point between lifting for health, fun, competition, and damage.
Going that far can be dangerous for anyone but a poucher can cause prolapse, hemaroids (think pregnant women and hemaroids) and hernia + a ton of other problems that I cannot even think about...so please be careful.
I did it to prove something to myself...that I was as good as anyone else...that I was normal.
Guess what? I am and I am not...I did cause some long-term damage to my knees, back and a lot of lower body pain...so for whatever reason you are doing it just be careful...undoing the damage is a bi-ch.
Sharon
RolandRolandMember

Having read a lot of these posts, everyone is different, and weight lifting exercises or expectations are different for each gym enthusiast. I have been weight lifting on and off through my entire J pouch experience. I had 6 months off in 2008 when I had my take down, but 6 years out, I still work out. I am not into dead lighting, or shrugging too much, so lifting more than x amount is irrevelent to me. As some have mentioned, there are many many ways to work out, with free weights and on weightlifting machines too. I think you can get a great work out doing that without hurting your hernia based areas or even your knees. I also take testosterone replacement therapy because I need it. No worries there either on my pouch, I get blood tested routinely and thanks be to God, all is well...I listen to my body and while nothing is certain, I feel; better for both weight lifting AND testosterone replacement therapy. I don't take it for "weight lighting" purposes, but for other reasons that only a male can understand. I just happen to be a male that is weight lighting AND taking testosterone. I don't get into the gym as much as I used too, but for those who have other needs and are considering testosterone, listen to your urologist and get a plan that fits your needs as a man Good luck.....

J jbaskinMember

Thanks to everyone for participating in this thread.  I just read it because that's where I am.  I, too, have Dr. Shen and saw him for the first time this week.  (My fourth GI at CCF.) 
He spent most of the time scaring the living shit out of me with dire warnings including the lifting.  I've never been a power lifter, but there is nothing like weight training to feel better. I am only seven months from the takedown. 
Most discouraging is there isn't a consistent message throughout.  Surgeon says one thing, another GI says something else... It would be nice to have something more definite than, "you're going to rupture your pouch, good luck."

J Jeff_JamesMember
That's too bad to hear. I also was an avid lifter pre surgery days but I found out everytime is start going hard I would end up flared and back on prednisone. One work I found and love with all my heart(and hear me out before judging this lol) is DDPYOGA. Yes it is a yoga based work out but you use your own body resistance with a lot of the moves. You sweat like a hog and actually feel good and stretched when you are you done. I managed to lose 28 pounds of prednisone weight in a few months. Bc we all know what prednisone can do! It's just an alternative to look in to. Google DDP yoga watch some of the videos and preferably the one about Arthur. Hope this might help some of you! I'm chomping at the bit to be able to hit the mat again! It was the best I had felt in all my colitis days! And maybe it can help you guys to!
Rene.maldonadoRene.maldonadoMember

OMG, I never come and check this forum, I have had some of the same questions and worry about the same issues. I just turned 37 and I still power lift with a Pouch. Matter of fact 5 days after I won 2nd in Military Nationals I had my large intestine removed. After a year from my last surgery I started to try and compete again, of course it has been a hard road because I'm always anemic and loose/gain weight from week to week. I do notice more blood in my stool after a good squat day. But I honestly thought I was the only power lifter with a pouch. I'm glad to see all of your stories and see that pouches have lasted as long as some of yours have. My most recent visit to my Doc it was explained to me that because of all the issues i'm having with my pouch (pain, bleeding, pouchitis) that my pouch will not last too much longer and i should go back to the bag soon. I told them i was not ready to do this and have been training and competing like crazy to at least make it to the Arnold Classic because i feel like i'm on a time crunch. thank you all for sharing your stories, you just gave me that extra motivation I needed before I head to Raw Nationals next month.

JS Jersey ShoreMember

Hi All & ERIC & DONN369,

I also have a big problem with keeping on muscle / weight and entering mid life at 47 combined with chronic musculoskeletal and joint pain.  I am a not a big guy but I was always naturally muscular.  In the past 5 years I have lost the majority of my muscle mass and I am thinner than ever.   (lost about 10 lbs just this year)  My pouch is now 31 years old (Mayo Clinic in 1985) and I am considering whats called Human Growth Hormone "STIMULANT".  It is supposed to naturally stimulate your pituitary gland to PRODUCE more HGH.  I have been told it is TOP OF THE LINE, organic/ all natural with very little side effects and that it has helped many people with chronic muscle and joint pain from either FIBRO or Arthritis related to IBD.   The brand is called SEMORELIN and my doctor assures me that it is of the highest quality and can be used for a specific period of time (based on blood levels being monitored)... sometimes about 6 months to boost levels and then you stop it.   Doctor said it will definitely help build muscle working out or not!   I cannot do ANY of the protein shakes with WHEY.  Only the vegan ones ( no milk, lactose or SOY!!)  Using ORGANIC (by Orgain) now and I am trying to increase my daily caloric intake.  Would be great to discuss this with others as I am feeling so alone and overwhelmed with my situation.  My chronic pain is debilitating so its a vicious cycle of not being able to build up my body physically to help with the pain...  Plus I have a tough time functioning with Percocet or Vicodin.   I am considering Low Dose Naltrexone but am first making a trip to Mayo Clinic in October for a full evaluation by many different specialists.  I have not been seen at Mayo in 20 years.  All of my local tests (OPEN MRI) (lumbar and pelvis) and blood work do not show ANY of the CLASSIC typical "markers" for IBD related arthritis / Ankylosing Spondylitis.  No Sacroiliac joint involvement but yet based on SYMPTOMS, I was told in 2000 that I had Ankylosing Spondylitis (Enteropathic Arthritis).    I want Mayo to due further testing with newer technology (CLOSED MRI... with higher magnification) because I cannot live with the chronic pain and local doctors feel it is more FIBROMYALGIA than anything.   But like others, I now am looking at a hip replacement (now have bad Osteoarthritis of the left hip) so I need answers!!   Tried BIOLOGICS (Humira and Remicade) 10 years ago.  Too toxic.  Landed me in the hospital over and over with infections.  I do have episodes of pouchitis as well and DO NOT want to take antibiotics as I believe that long term CIPRO specifically can be contributing to my chronic nerve and or muscle pain.  I am interested in the latest studies regarding bacterial overgrowth in the pouch and CHRONIC pain.  Hoping Mayo or Cleveland can help with this.   First trip to Mayo in October of 2016.  I will be seen by GI and Rheumatology as well as my original surgeon before he retires.   His name is is John H. Pemberton and he did my J-pouch surgery with I was only 16 years old!   He wants to do the pouch exam (Pouchoscopy).   If Mayo does not help me, I will go to Cleveland in 2017 and see Dr Shen and a Rheumatologist there.     Hope to hear from anyone with any input or suggestions.   I am so tired of being in pain and having a terrible overall QUALITY of life.      It impacts everything and of course I have not been able to work.   I can also be reached directly at:  michaelshore12@gmail.com.   

Best to all of you!   

Sincerely,

Mike

THE KIDTHE KIDMember

Hello to all. 

I had a total Colectomy with j-pouch back in 1993. I just turned 48 this year. Currently taking testosterone cypinate injections every two weeks for idiopathic hypogonadism. Started working out in the gym first time in my life and continue to go four to five times a week. Slot of joint pain throughout my body from advanced degenerative patio arthritis caused from UC. Gaining a lot of weight has bee a problem currently 272 lbs. bulking up from lifting but joints hurt when I stop excersising. I'm probably lifting too much weight for my age and health issues but never considered a prolaps of my pouch. More concerned with having leakage due to fistula surgery.  Considered isegenix for weight control but it made me really sick. Lately having bouts of pouchitis but treated succefully with anti biotic. So far not seeing the plus side of getting older and concerned with incontinents getting worse with age. Almost impossible to pee standing up. Still grateful to have my pouch and fearful of life without it. Glad to see this web site and forum.

D DaleerMember

LOL.  That last comment could have been written a little more tactfully but I agree with it.  I posted a youtube video deadlifting 675 pounds with a j-pouch 10 years ago.  A couple years later I broke a state record deadlifting 750 lbs. with my j-pouch.  Here we are 10 years later - i'm 44 years old and I can and still do lift extremely heavy weights.  For 10 years I have regularly lifted with maximal exertion - and I mean to the point where I've burst blood vessels in my eyes and or almost passed out.   I have never once had a j-pouch issue with regards to straining as hard as possible and lifting extremely heavy weights.  A few weeks ago I did a rack-pull (basically a partial deadlift from about knee-height) with 855 lbs.

My point is NOT that it's safe for everyone with a j-pouch to lift extremely heavy weights.  I'm sure everyone's j-pouch is constructed differently and functions differently.  My point is just that I have been doing it for 10 years with a j-pouch and have torn muscles (many many times), ruptured major tendons (a few times), blown flood vessels in my eyes, and yet have never had an issue with my j-pouch.  Take from that what you will.

Last edited by Daleer
D DaleerMember

Hi Jan.  Although I have only been on here intermittently over the years, I have noticed that you are always around ready and waiting to help and give advice to others.  I just want to thank you for all the comfort you've brought to and advice you've selflessly given to so many!

Unfortunately I have no profound or insightful answer to your question lol.  I'm fairly good at weightlifting and piano (I don't have many other talents) so I enjoy doing them.  I guess you tend to enjoy doing what you are good at.

Rene.maldonadoRene.maldonadoMember

Oh man I thought I was alone in this world. I've been struggling as a competitive powerlifter for the last 8 years. I've had my j-pouch for the last 7 years. I do lift heavy almost every workout. The biggest problem I have is figuring out how to intake nutrients. I've been severely anemic since I the surgery to the point I have regular iron infusions every 3 months. I even was shot twice about a year and a half ago during and armed robbery while I was going to an procedure for my pouch. Of course that through a wrench in the works as well. But after all of this i still compete at a pretty decent level. I'm actually moving up to the next age group this year for those of you that know the age groups (I just turned 39). 

I actually thought I was the only powerlifter post j-pouch. I struggle all the time with my body but lifting I felt has always kept me out of the hospital. At the beginning I was told to stay away from lifting but now my doctors encourage it ( I was medically retires from the Army so my Docs might be a little more open to lifting). That you everyone for sharing and please send any advice for a powerlifting j-pouch athlete.

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