Surgery consult tommorow!!

[bunnyceleste]

Crohns for 10 years (Im 24, diagnosed at 14)
first 5 years were garbage, lots of pain, blood, shits, ect, wasted alot of time on pentasa and codeine
last 5 years have been alot of healing through whole foods, veggie juice, yoga, acupuncture, low-stress lifestyle
lots of success with watching my diet- main breakthroughs being gluten free, cow dairy free, sugar and yeast free, very little grains, lots of good plant fats, coconut oil, herbal teas (licorice, marshmallow, mint, slippery elm, nettle, dandelion ect) organic pasture raised meats, eggs, fish, absolutely no whole nuts/seeds and never ever ever ever ever corn
must have probiotics, enzymes, liquid iron, b-complex, vitD, supplements for my joints

despite my success with diet and supplement the one thing that ALWAYs makes me flare is STRESS
last semester of art school sent me to the ER 3 times, 5 day hospitalization
recent parents divorce and discovery of dads affair sent me to the hospital for a week just at the end of october
both hospitalizations got me on prednisone, first time for almost 3 months, this time just about a month
all my flares wether small or extreme involve the same area of stricturing in my terminal illeum
finally talking about surgery, last hospitalization they wanted to do pred first to stabilie the inflammation as they dint want to try surgery when I was super gnarl inflamed, so waiting to taper off and do a resection

so in short, 10 years, been on pred twice, big bad gnarly stricture in my TI, going for a surgery consulatation TOMMOROW, Ive got lots of questions for him, I am pushing for surgery without going on remicade/humira ect as I am really not comfortable with them and believe I am strong enough to heal without, really actualy kind of excited to have this 10 year old wound OUT OF ME and the chance to start fresh and use all ive learned in healing and managing crohns naturally to heal the connection and be new

 

[Jennifer]

Best of luck on the appointment bunnyceleste!

Ya you'll want to be off steroids for that. For me I wasn't off them yet and the surgery was needed and it didn't heal right and got infected. Not fun and healing took a lot longer than it should have. Yet the resection did put me in remission for 13 years (currently in clinical remission which is still remission just minor symptoms but not a flare either). I've always taken maintenance medication so I'm interested in hearing how you do post op for sure.

Keep in mind that it is common for the disease to pop back up at the resection site. Even if you completely stay off meds its important to have regular testing done (blood work every few months and regular scopes done every few years when in remission etc) to make sure that things are going well.

Hope it goes well and keep us posted!

 

[Grumbletum]

All the best from me too. I'm about 8 weeks post op and kind of slightly still in disbelief at how normal I feel - wooopeeeee. Will be keen too to hear what they say about maintenance meds as I'm still waiting for my post op appointment with a gastro to hear what they'll advise.

 

[LisaL]

I am just four weeks post resection and am feeling pretty good. I too am opting for no medications after the surgery given that my strictures were pretty bad, but very focal and there is no evidence of disease anywhere else in my system.

I was considering surgery when my bowel perforated during my colonoscopy to check out the extent of my disease. I ended up with emergency surgery, but now, four weeks later I am feeling pretty good. My GI doc is monitoring my blood and vitamin levels. I hope your surgery consult is productive and that you are feeling well soon.

Lisa

 

[David]

Welcome to the community! How did your appointment go?

 

[barrett]

I had my first re-section at age 25. I had part of my small removed. It was close to where my small met my large bowel. I decided to go med free after my first re-section and had almost 5 years of normalcy with a couple of minor flares- normally when the seasons changed. I then went into a huge flare up was hospitalized twice, on pred for 9 months, tried imuran and reacted badly and decided to go with another re-section. Both times my GI discussed remicade and humira with me but like you did not feel comfortable with them and the possible long term effects. My last re-section was just over a year ago, this time it was my large bowel. I have less than a foot left now. I stayed on pred for 3 months after surgery and also stayed on pentasa, which is useless!!!! I had about 8 months of normalcy and now it's back in three new areas between my rectum and large bowel. I have decided to try remicade or humira as my only other option is a stoma. At 31 I am not ready for that....

I hope the surgery goes well for you and you have many years in remission.

 

[bunnyceleste]

so the surgeon told me I was misinformed and that my strictured area is nowhere near my TI, rather it is higher up in just pure small bowel zone. will discuss the TI misinformation with GI when I get a chance as I want everyone to beon the same page before I go under! this was a bit of a relief as I was really concerned about the connection between small bowel and colon, like the possibilty of removing that valve ect but apparently that is not the case at all for me! on 25 mg pred now, next week is 20, then 15 then done. feeling strong and steady and stable. sticking to lots of liquids, tons of veggie juice, homemade bone broths, miso soup, smooth squash soups, chicken fish and eggs, some rice breads and noodles, goat yogurt and tons of herbal tea. as well as suplements. wanting to go in to surgery with well rested calm guts as healthy as possible. im really determined to heal the connection well. the paper trail to surgery has begun, no date yet, waiting on the surgeons secretary to call (frusturating). the surgeon had no issue with me choosing drug free, my GI doc is the pushy one... so, so far so good. thanks so much for the support evreyone!

 

[David]

Thanks for the update! I assume your stricture is in the ileum and not the duodenum or jejunum, is that correct?

 

[afidz]

Its awesome to hear the good news on the surgery! Do you have an idea of when its going to be? Best of luck and keep us updated!

 

[bunnyceleste]

Alright the countdown is on!! My surgery date for laproscopic small bowel resection is MArch 4th! excited! getting bloodwork done today and have a preadmission appointment with the anasthesiologist next week. Got to get to work on my employment insurance stuff but kinda excited to have the time off work to heal up.

 

[CheerBear12]

Good luck and keep us posted and welcome! wishing you a quick recovery