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WARNING: SUPER LONG POST

Hello everyone! I've been quite a lurker on this site for almost 3 years and a lot of the questions and answers and positiveness of this community actually (silently) helped me out a LOT

I was 22 years old when I was diagnosed with FAP -from my mom's side, she had colon cancer when she was around 21 or so and she had a total colectomy and the colostomy bag and everything and she still had 3 kids, my older sister, me, and my younger brother. It was a trying time for me because I did not have the most supportive parents and although my mom knew what she had was hereditary she chose not to tell us (I am still working though this, not sure how to forgive her) But, good thing with me finding out on my own is that I got my sister and brother to get tested also, and my brother now is currently going through surgery #1 (also very complicated for him, had to have a few repairs, he's even saying he doesn't want to be reconnected anymore at this point just to avoid another surgery, poor kid)

Anyways, I ended up having the total colectomy with the temporary ileostomy for about a year before I was reconnected. However, there were major complicatons, abyss after abyss, infections, repairs. and the also found cancer cells in my lymph nodes so i ended up doing 8 rounds of chemo (FUN especially when all your friends are at parties and beach clubs)

But the biggest issue i had though all of this was actually pain control, i was literally writhing in pain every single day my body just could not handle what it was going though. I have a petite frame, I have never hit 100lbs in my life but I am about 5'2. I am not malnourished or anything, its just the way I was born.

So after all of this trying different pain killers, only the IV stuff was absorbing into my body and eventually I was able to go home, using 20mg of oxycodone. It sounds a lot to me now, but back then it was just so incredibly necessary. It was the only way I could've finished my double major, maintain my relationship, etc etc 

Anyways, the pain went away eventually and everything seemed to be fine with mild complications here and there (pouchtitis, bowel obstructions etc) but I've been pain free for about a year or so until recently.

In March 2017 I started feeling a lot of pressure and discomfort in my pelvic area, where I assume my ovaries are or uterus possibly. So i went to the doctors they scanned me and said that i have a couple pretty big cysts but nothing to worry about, but given my history, we'll just keep an eye on it. I didnt want to go back to being on opiods all the time (and this is the thing, I DONT FEEL EUPHORIA or whatever people get so hooked on, it literally just takes the pain away and kind of makes me a little drowzy) But since there was such a stigma attached to it I rather go the holistic route. So I used cbd oils, medicinal marajuana, you name it ( I am Canadian so we're very liberal about stuff like that up there lol) but nothing worked and eventually i had to go to just taking 5mg/325 percocets everyday just to function.

Few months later, I moved from Vancouver to Toronto to be closer to my siblings, i missed them so much. but that also didnt last long, as now I am living in new york, where i met my husband and we just got married this past August! Everything sounds great, seems like I should be having the time of my life, but  couple weekends ago the 'cyst pains' became unbearable. I was vomiting, crying and just felt like i was being ripped apart, I toughed it out for 2 day because at this point i really hate hospitals, and I was scared of American healthcare (fear of the unknown) and I was hoping it would just pass. It did not. My hub dragged me to the #1 hospital in NYC and they just explained that it could be a torsion or it could just be a rupture, the interns there were more than excited to cut me open and see what my anatomy looked like and I ended up having a complete break down. So they reviewed my charts and just sent me away with some pain meds.

The pain meds they were giving me is not even close to being sufficient for the pain i was in, and also due to my unfortunately high tolerance to opiods. I told this to my primary care doctor in NY and he gave me the highest amount that he could under regulation and told me to contact pain management. A few problems:

1) Pain management is really busy, i cant have an appointment until about 3 weeks

2) I set up an OBGYN appointment and I'm wondering if I should be making an appointment with a GI Specialist also?

3) America's war on drugs is in full effect and I don't know what to say or how to act because it makes me feel like I'm a drug seeker in their eyes.

4) Only 1 doctor seems to be able to prescribe you 'controlled substances' so do I just send all my test results and stuff to him? I have been thus far, but what about pain management? Assuming they'll even prescribe me anything.

side note: If the had a non narcotic way to make my pain go away I would give up almost anything for that, I know my life was changed after my first surgery and I will never be 'normal' again. But I am just so tired, so tired of dealing with my body, so tired with dealing with being in pain, and mostly I'm tired of putting my husband through this (he never complains but I just feel such guilt) I dont smoke, drink, do drugs. I love to exercise and take selfies as so many millennials do.I want to go on vacations with my husband, and hang out with my friends I just want to be pain-free and normal for longer than a year! 

I really really have tried everything, I cant take tylenol, ibuprophen, naproxen, even codeine without needing to have a BM like 30 times a day with a different gut wrenching pain. The percocets were ok before because of the low dosage, but that is not going to be sufficient for the pain I am in right now as the blood reabsorbs into my body. The OBGYN at the hospital explained it might take a few weeks, and also because i have a lot of adhesion and scar tissue internally so it's really hard for them to tell me what's going to happen.

If you have ANY suggestions to a Canadian girl with a complicated medical history in American healthcare PLEASE shed some light and let me know what kind of questions I can ask. I truly believe/hope this pain won't last forever and it can be resolved in a couple months but I just feel like I'm repeating my story over and over again. 

I am getting sad and frustrated, I am only 28 and the amount of medical stuff i've had to deal with is hell (and i know i am lucky for everything that's gone my way and even having the privilege to complain about it) but yes... any insight or experience will just make my day!  I truly don't want to come off as ungrateful considering things did work out for me pretty well, except for the constant pain, but I did have the free healthcare (woo Canadian pride) but the holistic thing was not, so I never had a dream wedding which is ok also, its too hallmark-ish anyway But now that I'm in the US and looking for a health team and corresponding insurance is well, really overwhelming to me. So please please give me any advice you have so I can stop being in pain and go back to enjoying the last 2 years of my twenties

Thank you all in advance <3

 

p.s - I do have American health insurance through husbands work (yes. another thing to be grateful about

 

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