First time doing this, guess i need some outlet

This is my first post to this, or any, forum i have ever made. I guess I will start with a little background. I am a 27 yr old male living in NorthWestern Ontario and as such my surrounding medical system is lacking. My best chance of seeing a specialist is either a 5 month wait in hometown or else a trip to Toronto to see doctors there.

Right before my 20th birthday I was diagnosed with Ulcerative Colitis and as a 20 year old does, I didnt care about my diagnosis and thought I could just continue my life exactly as is with no alterations, I was greatly mistaken. After one weekend of partying and drinking I quickly realized that my body was not happy with my choice of events and rebelled quickly and viciously. I learned right then that things were changing.

As I went through the standard treatment for UC, i eventually wound up sticking with Remicade as the biological agent to best treat my condition. Sadly, by time we got to the discovery that this drug will work, it was 5 years later, and damage was already done.

Due to the prolonged inflammation and general unease, there had been irreparable nerve damage caused in the left lower quadrant of my abdomen. Now, on top of the UC, I had to deal with nerve damage. And now, this past year It has been discovered that I have diverticulitis and have had "abnormal cells" within my intestine, which is the fancy way of saying a tumour is starting to form, if its benign or malignant, it has yet to be determined.

I honestly cant remember the last day i woke up or went to sleep without pain. It has been well over 3 years now and it has massively disrupted my life. I was forced to leave school on a couple of occassion, once during my final semester of school to be a paramedic as the physical demand became too great for my body, and now again in business school because the pain has just completely overrun myself, making it impossible to focus for any long period of time.

I was in the gym 7 days a week, played sports, soccer, baseball, footbal... Any sport. I loved being active, but overtime I noticed my ability to continue to play decreasing. It went from 3 hours to 2.5, then to 2 and so on until it got to the point where when I ran for 5 minutes my body would shut down and not allow me to do anything. The pain from the core of my body made it impossible to move. I have broken my leg playing soccer and continued on for a week before giving in. I have had knee scopes and returned to playing wirhin 2 weeks after an MCL tear. I broke and dislocated my finger, so i put it back in place and continued on. Cut myself to where I could see bone, I just wrapped it up, continued working on the farm for hours and left to get it stitched after all the work was done. I endured all of that... But the pain I feel from my abdomen puts me on my knees... And fast.

As a result, my current medications are as follows:
6mg hydromorphcontin BID
4mg hydromorphone q4h PRN
300mg Pregabalin BID
50mg Elavil HS
10mg Buscapan HS

I also sporadically take antibiotics if the diverticulitis is acting up causing infection

I am saying all of this because I honesty dont know where to go. There are no real support groups here, and im just exhausted. My soon to be wife is amazing and is incredibly supportive, shes a rock star. But outside of my immediate family, i really dont have anyone to talk to. And even when i do talk to them, they dont get it. They dont understand how I cant work all the time or sometimes cant walk for a lot of the day. Its just something they will never get, and I really hope they never come into a situation where they would understand.

I hope I can get something... Anything out of this. I dont know where else to turn. Sorry for the long post, figured background info would be important.

Welcome to the forum.

There are several forums on this site that you might want to read and maybe post, better than just the pain forum. ulcerative colitis, chron's, irritable bowel, ostomies There are no doctors here, just a bunch of people with our own individual experiences.

For several years I fought infections in polyps (diverticulitis) at both ends of my large colon, had 3 surgeries to take out pieces, one big surgery when infection spread to small intestine. I started by insisting on just a drain tube in infection, did that twice. That was a mistake and I ended up with a colostomy for several months while the intestine healed - not fun. I should have gone with the sigmoid removal when the first infection happened. My colon surgeries were all done laproscopically, so no bad scars - not a horrible thing to have done! I've had no more infections, no more pain from the intestines.

Taking pain meds is not treatment for UC and diverticulitis. It only masks symptoms. There are many more stories on the forums, but I would suggest going to see a couple of specialists. Find out if surgery would help. You might want to see a surgeon, get some tests for the diverticulitis. Also see a gastroenterologist specializing in UC. Get some expert information!

Welcome Walsh97. Glad you found us. I agree that it is amazing how differently our bodies react to 'accute' pain that has and end and 'chronic' pain that doesn't ever seem to have an end. You may well find more information about your condition on one of the other forums, but here, we definitely understand chronic pain! I don't think any two of us have the exact same issues, but we gather here to let out our frustrations and our joys. Just to have someone take the time to read what gets posted, to be acknowledged, is such a help. I post here and in the 'depression' forum as well. No one seems to mind a little 'double dipping'! Avail yourself of all of the personal experiences in which ever forums seem to fit the bill! I hope you find the answers you seek.

Welcome Walsh. I'm glad you're here. You've found a good group of folks. While some of us (me!) don't have your diagnoses, nor have we (me!) experienced some of what you've experienced, we (me!) can lend an ear and relate to dealing with the chronic pain.

I can try anyway.

While I might not have any experience in the majority of your physical issues, I can relate to pain. Chronic, physical pain. And emotional pain.

I can tell you it's a lonely thing, having a chronic illness. People you thought were your friends sometime become a thing of the distant past. (Experience tells me most time it's a 'fear thing'.) Other people, whom you hardly knew, or whom you'd not been graced to cross paths with before become your greatest advocates, allies, cheerleaders, support system....friends. I hope you find a bit of that here....because we can be those things, even if we're not in shared space.

Chronic illness isolates and alienates. Sometimes we isolate ourselves, sometimes we convince ourselves that's the only/best solution. Sometimes we're so filled with fear or shame or emotional pain that we close our windows, our doors and our hearts to the world.
I've done all those things, had all those (not so lovely) experiences. I was pretty overwhelmed by all this STUFF they kept telling me, got tired of burdening (my perception) others, convinced myself people were tired/disinterested/bored of hearing about this STUFF (that I was equally tired of contending with and talking about)-- I was just sick and tired of being sick and tired.
Pretty sure I'm not the only one who know that one!

And a bit like you, I have a relationship with someone who tries to be supportive, understanding and compassionate. He wants to "get it"--he TRIES to "get it" and, to the best of his ability he does sorta get it. But nobody quite gets it like another who's walking in those same/similar painful shoes. Or maybe it's that we don't trust that they could possibly "get it" given their experiences/lack thereof?

I know I can nod to some of the things you shared. I know some things just made my heart hurt for you. My stepmother suffered with UC and it could seemingly run her life. She didn't have some of the luxuries we have today and she felt very lonely and isolated.
I hope you take advantage of the luxury of "here".
You don't have to do this journey alone.

Welcome to the board.

*hugs*

I think we all kind of know what you mean.There's something comforting,to me,to know y'all are out there.

It's good to be able to discuss this part of our lives with like-minded and experienced folks.

Welcome and take care.

Rick

edit:If you want to put a "Signature" that will show up whenever you post,click My Profile,then Edit Profile.When your finished click Save Changes.

See ya.

Hi Walsh,

I just wanted to chime in and say, Welcome aboard and I'm glad you found us CP'ers! All that has been said by the other members is in fact the sad but truth to this whole pain journey. Here.... is a place to share, vent, acknowledge, laugh, cry and confront your pain head on with people that are and have been through it.

I hope you find what works for you with medication.

Will be praying for you,

Hugs from Texas,

Pam