August 2014 Moms
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wwyd
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I have discussed this with my dr but need some outside point of view
i have crohns disease - an autoimmune disease which your white cells attack the good bacteria and digestive organs. i am at the top dosage of all my meds, and I'm on a biological (humira, the other biological remicaid i became allergic to after 2 years). The disease is attacking my colon. It is riddled with ulcers and is causing dehydration and anemia which causes bad joint and muscle pain and fatigue.
Here is my decision
1) i can continue hoping to delay the inevitable, change around my meds, add a low dose chemo drug which will require weekly blood draws(it suppresses my body from making as many white cells), see if I can dose the humira more or if i can get a little bit higher dose. This is not guaranteed to help me, like I said it can possibly put me into remission or it could just be delaying the surgery.
2) throw in the towel and start discussing sugery. I will have a stoma for a few years but may be able to have a second sugery and be "normal". Life will improve in that i won't be getting up several times at night or looking for bathrooms but maintaining the stoma isn't ideal(none of this is ideal though). Sugery will make it harder to have kids (we were done anyway) and i could suffer from dumping syndrome or short gut syndrome.
honestly neither option is appealing to me but how i am now with the constant pain, several bathroom trips, ect isn't exactly making life super fulfilling either (i miss a lot of DS activities because I'm having a bad day...)
i have crohns disease - an autoimmune disease which your white cells attack the good bacteria and digestive organs. i am at the top dosage of all my meds, and I'm on a biological (humira, the other biological remicaid i became allergic to after 2 years). The disease is attacking my colon. It is riddled with ulcers and is causing dehydration and anemia which causes bad joint and muscle pain and fatigue.
Here is my decision
1) i can continue hoping to delay the inevitable, change around my meds, add a low dose chemo drug which will require weekly blood draws(it suppresses my body from making as many white cells), see if I can dose the humira more or if i can get a little bit higher dose. This is not guaranteed to help me, like I said it can possibly put me into remission or it could just be delaying the surgery.
2) throw in the towel and start discussing sugery. I will have a stoma for a few years but may be able to have a second sugery and be "normal". Life will improve in that i won't be getting up several times at night or looking for bathrooms but maintaining the stoma isn't ideal(none of this is ideal though). Sugery will make it harder to have kids (we were done anyway) and i could suffer from dumping syndrome or short gut syndrome.
honestly neither option is appealing to me but how i am now with the constant pain, several bathroom trips, ect isn't exactly making life super fulfilling either (i miss a lot of DS activities because I'm having a bad day...)
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Re: wwyd
I also have Crohn's and FWIW - I would do the surgery. I feel like at this point, you are so sick that doing chemo is just delaying the inevitable and making yourself miserable in a different way in the process. I know LOTS of people with stoma's who honestly feel it was the best decision they ever made.
BUT, I also have a mild form, and have been in remission for a couple years now (with the exception of the flare at the end of my pregnancy that caused my induction), so I have never been in your shoes. I just feel like if I was in as bad of shape as you are, I would be tired.
Mrs. H
Crohn's Dx: August 2008
Endometriosis Dx: May 2010
Married: 05/19/2012
TTC #1: June 2013
BFP: December 2013
DS: Born 08/29/2014
TTC #2: July 2015
BFP #2: September 25, 2015
First off, HUGS x a million. DHs brother suffers from Crohns disease too. I know from seeing him that the pain and struggle of the disease is real, and I don't wish that on anyone.
My personal opinion...I'd have the surgery. Only because it sounds like it will, someday, be inevitable no matter what you try or how long you delay. I'd rather do it now while you're still young and hopefully it would give you the opportunity to be healthy and stop missing activities for your LOs because of the disease.
But take that with a grain of salt. Obviously I don't have the disease and don't know what it feels like or how difficult it is to live with, so the decision might be different if I had the struggle myself. Ultimately you have to make the decision based on what you feel yourself!
eta words
the chemo drug is 6mp (mercaptipourine) it's a very low dose as I'm a moderate metabolizer of the drug so i can only take 50 mgs. I don't have a history of obstructions, absess or fistula but I pass blood everytime igo to the bbathroom - sometimes black..when we discussed it before my dr said he hopes it would be laperoscoptic (which they cut the stomach in a small area then cut the colon into 3 pieces for removal) but it depends on how swollen the colon is and how the removal goes. Then they would sew a small part of the large bowel or the small bowel (depends on if the beginning of the colon is diseased) to the opening to create the stoma. ( @lizziebennett ) the disease presents like ulcerative colitis (so it causes ulcers and inflammation like UC and only in the colon as far as we could tell) there are a few small patches of "cobblestoning" and biopsies came back crohns positive.
@kandreas1 there is one crohns and colitis support group which meets once a month at a time and day that isn't good for my schedual. I should search for a stoma support group though.
You should Check out my friend, Rebecca Zamolo who just had the surgery for her IBD. She's making a documentary on her story to raise awareness. If you google her name you will find her Twitter and you tube channel-she is hilarious
Check out her campaign here for some perspective and if you want to follow her for support (her campaign is over so this is in no way trying to raise money).
Team Rebecca!
https://www.kickstarter.com/projects/1829927091/colostomy-and-ibd-awareness-documentary
Here's a little ad she did too:-) she's so brave!