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Hi,

Warning Long read: If you want the main topic, go towards the end but I suggest reading the whole thing to get the whole picture and a few Lols, this turned out to be two different writings into one Lol ..feel free to read from the top ). 

    Long time member, I turned 30 this year, but had my Ileostomy since 20! Only 3 months of UC...then boom! So I would say I am an experienced vet. I also went from 128lbs after surgery...to 207lbs at 5ft.8...ok I lied, I stand a little below 5ft.8, more like 5ft. 7 7/8..lol( shoes help ). Anyway, I achieved this through weight training. It only took 4 years, understand I was muscular before I lost all the weight( so some of the muscle gained was muscle memory ). 

However, it took me 4 years just to get back in the gym. I mean what I would do easily for 150lbs for warm ups....I couldn't even do for a 1 rep max. I also went to a bodybuilders gym, all mirrors, etc......But after walking into the gym, it took me a year and a half to develop a workout routine, grabbing functional movements, but also to put pressure on my lats( over abs ) and I viewed range of motion entirely different. I went to a support group one time...and everyone wanted to talk about," Feelings" and they had a Ph.D Pyschologist at this one meeting I went to, and he busted out stats, saying People with ileostomies were no more depressed then the general population. That " If " the person was depressed, the ileostomy/stomas just brought out their already depressed predisposition. However, me already taken Statistical Math, Public Health etc in college, new his stats were misleading, as any stat can be scewed to fit a hypothesis( theory ) of one's clinical practice. However......I know I know....Parastomal Hernia..getting to it........I started talking about weight training out of the blue, I was the youngest member there by about 25 years of age. I seen in the group people who needed to lose weight...people who needed to gain...from all types of backgrounds...cancer, UC, age related illness. In my city very few people have stomas that are my age, in fact this was the youngest support group. So many years I felt like I was on an island....my own routine, my own diet, heck I just discovered what a Durahesive was( to those that are still in the mid 2000s high five to stomahesive wafers....I use them to ). I know I know Parastomal Hernia.....I started to talk about weight training as in 3 years I went from a bench press of 95lbs 1 rep max....to repping 245lbs for regular working sets. I started to talk about training though....and all of a sudden, this" Feeling " talk turned into something tangible, yet intangible( something you can't touch ). It was almost like a grimace in the room changed. People started asking me questions....Seen a women needed to lose weight for her surgery, but her situation was much different. After her surgery, her husband didn't want to be sexual anymore in spite some issues( he felt helpless, so he said ), her daughter was going off to college, She also said she got remarks about her weight from husband. So, her depression.....simply was because she had a LIFE ALTERING SURGERY THAT CHANGED HER LIFE....not a predisposition to depression, and oh I am sure this had impacts on all the above, marriage etc. As I was talking and people were now opening up, the Ph.D Pyschologist stopped talking....and this thing called feelings was real...it was tangible now. People just opened up about their physical. In this world were so many people deal with things that they quite can't say, were things are felt but so intagible, you don't know why you feel them, but do. The air lit up. I myself was a lost soul at times, hey I attended the support group( the youngest I could find ). Then...I had one elderly lady, calmly next to her husband of probably many years...she pokes me in the midst of about 9 people talking at the same time...she goes, see now your not alone, you have a purpose.....and she made a little chuckled. Then I realized training meant more to me then ever.......Now the peristomal Hernia!

In 2015 I lost myself....It started off great, then about mid June down hill. End of story Lol. Voodoo...jkin. Seriously Voodoo. I am sitting typing, and I am a shell of what I was....Some health issues hit( unrelated to ileostomy or previous UC )...However, I stopped weight training...I hit 30( not the reason , doesn't help ). I had to overcome alot, let me not bore you no more. I quit weight training about 3 months ago.....and all of a sudden I had a late dinner 9 p.m, about two weeks  ago....then I ate around 4 a.m, shredded wheat cereal,....then I went to lay down. Few hours later pain....the pain was from very far left abdominal to the stoma itself. I mean I called them Labor pains. Now I have I high pain threshold...when I had my Ileo surgery, I took myself off morphine drip and sat there in pain for 2 weeks( even had a TIA and bllod clot ). I mean I have broken my clavicle, and still continued to play football and make two tackles while it was broke, I have had concussions were doctors thought I had bleeding in the brain....you get the gist...my pain tolerance is high. So I know when I feel the pain and it inpeeds me, it is not a good sign. I couldn't sleep, just sharp intermittent pain. So I started drinking hot drinks. Hot cocoa, tea..I stopped all eating. This lasted all night, all throughout next day, I finally went to an ER. I did notice that the pain and the reason for it's intermittent, was bc when I was having a bowel movement- if you will- was when I was having the pain. All the way from the left abdominal...to the stoma. I also noticed of course the stoma site hurting. Ok, so I have a blockage or partial blockage...right? I played a similiar game before, never seen a doctor, just the pain went away( stoma site would hurt a little mabe for a da or two ). In the ER, they took a CT. Put me on a pain drip....and then I went home. My pain in m left abdominal went away...however, around the stoma site, not so much. I cut my wafer( STOMAHESIVE IN THE HOUSE ) about 1/8 inch wider, thinking my stoma swelled up. No avail. THIS IS WHERE IT GETS CONFUSING! .......So my doctor  sent me( made appt ) to the cleveland clinic.to see a Nurse Practitioner...and at the same time, my gastro( Who is an M.D and is regarded ) made an appointment. So I see my gastro, he looked at the CT scan, took my wafer off, and stuck his finger down the ileostomy( sorry guys ). He agreed that I prob had a partial blockage at the time. I asked if I had a hernia? He said no...I asked this question about 4 different ways...lol. He said no, it doesn't look like it, he also said the CT with contrast, showed no signs of a stoma hernia. He did note that there was a narrowing inside the ileo, when he stuck his finger, hence why I could be feeling pain around the stoma site, and that there was some skin irritation. .....Now where I have the ileo, it sticks out just a little bit...I cannot say if it was always like this( It might, I mean it was far as I know for the last year or ears...I really don't know )..I did bring this up to the Gastro, he reconfirmed that he did not see any stoma Herniation, and that the CT didn't show either.I then asked him to look at it while I was standing up looking down anteriorly, as he did most of his observation while I was lying down. He did refer me to see a local surgeon and stoma nurse with his report and CT. So, I then went to the CC to see the practitioner, keeping the appointment, at this time, the pain at the stoma site has diminished by 85%. In fact where it hurt, was below the stoma, and above, like right below or above,...the pain was so residual that really it could be the stoma itself- that's how close. 

The Nurse Practitioner has a different view. I go there, and  says I have a hernia. She observed me, like the gastro, when laying down. I then asked her if a CT would show if I had one, she said yes....Now, she didn't have the CT nor it's report( I did inform the nurse pract of reports etc ). So now I am left in angst writing this very long story. A lot of things went through my mind, and one was weight training( even though as I said I haven't trained in months ) and how I would not be able to do it again. So now I have two different opinions! Like complete opposites. I can literally poke really hard above the stoma( few inches above ) no pain, nor discomfort. So, any opinions? 

 

 

Tags: Ileostomy, CT, pain, Peristomal Hernia, People, weight

Replies sorted oldest to newest

Not all hernias cause pain...I had a couple of peri-stomal hernias...no pain but my stoma (k pouch) got very loose and then my valve popped out.

Nothing showed on x-rays, CTs or any other exam...it was the results that showed the problem.

No advice or opinions...I would most likely trust the C.C. doctors and nurses' opinions...

Sharon

Good luck

skn69

Thanks for the reply. Yeah, it is weird. I just seen a surgeon locally today, and he concurred with my G.I doctor that there was no hernia...I didn't mention what the Cleveland Clinic said, until after I seen what he would say. So now I am really anxious bc I have no clue. I have an M.D G.I doctor saying No, a CT showing nothing, and now a surgeon, who I spent relentlessly asking lol. He then brought me back, and showed me the CT bc I kept asking. The reason why I am concerned is bc if I do have one, I go back into the gym...basically my lifestyle...from what I know stoma hernias can only get bigger. Now add force.  Now if I was 30 years older and was at sendentary lifestyle, then in the grand scheme it wouldn't be much of a bother. He did notice, like the G.I doctor, that there was a narrowing in the stoma. He actually said it felt like the opposite of a hernia, where the skin around stoma was pushing into my stoma. 

He did say he can order Barium with x-rays and he can specifically look for hernia. But he said he felt none as he( not to be grouse ) stuck his finger into the stoma. - Idk how you can tell or not from that. He also said, he felt nothing around it. Again, did note some narrowing. For me, it's hard bc all docs( well the C.C was a M.S.N( masters in nursing practitioner ) are giving strong convicted answers. For me, If I go into the gym...I mean 700lb leg movements, over 200lbs benching( for 24 times ) etc....If I do have hernia, I could definately do some irreversible damage. I do have an option for J-pouch....but.....my first surgery, I had a TIA( minor stroke ), a blood clot( caught it myself while in hospital ).....it was just bad experience, not even joking there were cockroaches in my room, so when I got moved, my family thought something else happened to me...just cock roaches. The only thing that saved my life was that I had alot of muscle to give before surgery...which I dropped 60lbs of it....if I didn't have that...I don't think I would be alive tbh. 

I do appreciate the response. 

C

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