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penhow45 said:
doc is considering increasing the frequency of the humira and adding 6-mercaptipurine....once the abscesses have drained. im not big on the later drug...isnt it for chemo??? seems quite harsh on my body. 😒
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6-MP (and azathioprine) were initially used for cancer but have shown benefits in treating fistulas and slowing antibody response to biologics like Humira in addition to treating IBD without use of other meds in some. It was my GI's first choice years ago when I was still on Humira to help slow the building of antibodies and shift me off of prednisone.

It is my understanding that the dose used for IBD is lower then what is used for cancer patients and so while risky, the application in IBD is different then as a course of chemo and should be taken into consideration when considering google searches.

Largest risk with 6-MP in my experience was with my liver function - we did blood work every 8 weeks and once my levels were showing undesirable effects of the drug switched over to Azathoroprine. While the risks of most IBD drugs seem substantial to me, many doctors will utilize a combo of meds to try to get the most out of each option for a case before completely moving to a new course of treatment.

I would push to understand your doc's logic. Why this in combo with Humira instead of say, Azathoroprine or even methotrexate? What is the reasoning when they considered you as a patient and the options available? Ask not just about the medication, but the medication in relation to your specific case history.
 
duh panda said:
6-MP (and azathioprine) were initially used for cancer but have shown benefits in treating fistulas and slowing antibody response to biologics like Humira in addition to treating IBD without use of other meds in some. It was my GI's first choice years ago when I was still on Humira to help slow the building of antibodies and shift me off of prednisone.

It is my understanding that the dose used for IBD is lower then what is used for cancer patients and so while risky, the application in IBD is different then as a course of chemo and should be taken into consideration when considering google searches.

Largest risk with 6-MP in my experience was with my liver function - we did blood work every 8 weeks and once my levels were showing undesirable effects of the drug switched over to Azathoroprine. While the risks of most IBD drugs seem substantial to me, many doctors will utilize a combo of meds to try to get the most out of each option for a case before completely moving to a new course of treatment.

I would push to understand your doc's logic. Why this in combo with Humira instead of say, Azathoroprine or even methotrexate? What is the reasoning when they considered you as a patient and the options available? Ask not just about the medication, but the medication in relation to your specific case history.
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many thanks for your wisdom duh panda. i need to take you with me to my next appointment!!!!! 😀
 
Someone from Accordant Health Care called tonight to check on me. I mentioned that I had one episode of incontinence with my bowels after going months without it happening for a while. I also mentioned one day when I had diarrhea and where I had some mucus in my stool. I also mentioned feeling a little woozy. She thought I should call my gi tomorrow.

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going out for dinner for my friends birthday tonight...instead of being happy,i feel stressed. trying to re-focus my thoughts and stop worrying all the time. ( i hope they dont mind me bringing a pillow to sit on! lol! restaurant chairs & setons do not make for an enjoyable occasion!)😫
 
penhow45 said:
going out for dinner for my friends birthday tonight...instead of being happy,i feel stressed. trying to re-focus my thoughts and stop worrying all the time. ( i hope they dont mind me bringing a pillow to sit on! lol! restaurant chairs & setons do not make for an enjoyable occasion!)😫
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Hey Penhow! I always find it helpful to eat before going out (even for dinner parties or events revolving around food). Doing that has certainly helped curb the stress/ anxiety I feel when facing group situations, people I may not know well/ don't know me well, or "strange" restaurant food and unfamiliar bathrooms. I cant imagine setons would feel good sitting in ANY kind of chair, cushioning or not.

Hope you are able to make it out and find enjoyment in the evening. Never feel bad if you need to excuse yourself early and head home to rest :) Making an appearance rather then sticking around the full night keeps you mysterious ;)
 
I had a little bit of blood in my stool this morning. I have also felt like I can't empty myself most of day. My doctor had me do a calprotectin and blood work.

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Not a good day[emoji20] bloated and having cramps. Also when I have these symptoms I also get lower back pains. Does anyone experience this? Also i have started back in the fodmap diet again. I stopped after starting Humira thinking I could eat anything. Well that's not the case.
 
Lost 8 lbs. so far this week. I am 100% sure there is some kind of secondary infection running havoc. Is it a UTI, C-Diff, Sinus infection? Don't hold your breaths - there were no available appointments with my GP Till Monday morning.

Hope you can get a bit of comfort tody SDScotty - when bloated/ cramping I always feel it through into my lower back and hips as well as down into the pelvis. Figure it has something to do with how the intestines lie in the abdominal cavity.
 
duh panda said:
Hey Penhow! I always find it helpful to eat before going out (even for dinner parties or events revolving around food). Doing that has certainly helped curb the stress/ anxiety I feel when facing group situations, people I may not know well/ don't know me well, or "strange" restaurant food and unfamiliar bathrooms. I cant imagine setons would feel good sitting in ANY kind of chair, cushioning or not.

Hope you are able to make it out and find enjoyment in the evening. Never feel bad if you need to excuse yourself early and head home to rest :) Making an appearance rather then sticking around the full night keeps you mysterious ;)
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duh panda...all went well. i took my pillow and had soup. cheap nite!!!!!
 
duh panda said:
Lost 8 lbs. so far this week. I am 100% sure there is some kind of secondary infection running havoc. Is it a UTI, C-Diff, Sinus infection? Don't hold your breaths - there were no available appointments with my GP Till Monday morning.



Hope you can get a bit of comfort tody SDScotty - when bloated/ cramping I always feel it through into my lower back and hips as well as down into the pelvis. Figure it has something to do with how the intestines lie in the abdominal cavity.
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Thanks duh panda and the same to you.[emoji4]
 
Yeah!! Friday ☺ oh no i forgot i work saturdays 😢. My weekend is sun-mon. Im planing to sleep through most of it so maybe im not the one for you to live vicariously through 😃
 
52 degrees and not a cloud in sight. Time to get out for a bit of adventure :) Since realizing the park and walking paths nearby have OPEN bathrooms &/or port-o-potties stationed roughly every mile I don't think I've ever felt this comfortable just heading out for a day with no immediate plan.
 
Aw thanks , bet she was glad of that eh!!. I hate to hear of my friends here suffering, it breaks my heart. I know im ok at the mo n have been for while, but i sure aint forgot how it feels. So i feel for you n the others so much . 💕💋
 
Today, I am feeling hungry. Not feeling hungry is starting to be a reliable red flag for me that something is amiss either crohn's wise or a secondary infection of some kind.

Today I'm feeling relieved, and proud. It's always such a relief to go into an appointment and have everything run smooth and quick. Plus, I'm finally getting used to my new health providers and their office locations which makes going in that much better. Sinus infection that seems to have piggy backed a cold. So glad I didn't wait any longer to just "see if it'll clear up" as my ego likes to convince me. I'm proud that I went in earlier then I have in the past (without any parental nagging to boot) to get a professional opinion and treatment as needed. Should be back to as tip top condition as I've been within the week :D Just in time for to cook up a storm and host Thanksgiving next week.
 
Hi duh panda. Glad you got on top of it quickly hun. Heres to you keeping well ☺ . Happy thanksgiving for next week 💕💋
 
Maybe they will give you some prednisone because i think you might have a flair? Could be wrong best they do every test. Hope get that calprotectin quick
 
family vacation to vegas for thanksgiving...sounds awesome right? WRONG! I am already stressed over everything from the long flight to holding everyone back from having fun. I know it would be good for me to get away but, between the crohns, the setons and my anxiety...it feels like WORK! oh, and did i mention having someone care for my 10yr old dog who has bad arthritis...😳😳 ugh...what to do....
 
Much love n support to you all. Your in my prayers each night old chums. I never forget to mention you all . We all need any ounce of help we can get be it medical or divine. 💕💖💋
 
mandyk said:
Much love n support to you all. Your in my prayers each night old chums. I never forget to mention you all . We all need any ounce of help we can get be it medical or http://cdn-ugc.cafemom.com/gen/constrain/500/500/80/2015/11/15/08/d4/pg/poccvsi74k.jpgdivine. 💕💖💋
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AMEN mandyk!!!!!!!!!!!!😀😀
 
Every now and then I think "I could totally be working right now!" And then those couple hours of normality pass and weeks like this happen where I don't even realize it's Friday and my week has passed until I'm almost ready for bed. I usually feel guilty. But I'm starting to realize the upsides to these very very backward weeks mean I go into the weekend with a clean house since all my Tuesday/ Wednesday/ Thursday tasks did not get finished till tonight. Not bad just a very effective reminder of where my limits lie.

Hope all are keeping sane tonight!
 
Hey everyone!
So I am feeling soooo much better now, like Most of you I have been on every medication for Crohn's disease. I went from having digestive issue from when I was very young to being diagnosed at 22;( it was horrific, this journey we embark on every single day, would make anyone want to run away and hide from the world, I have arthritis, endometriosis migraines, you name it because I was so malnourished. I gained a crap load of weigh because I just ate anything that didn't make he throw up.which was never much. Yes I was on prednisone gained weight when I was on that for sure, but the remicade, humira, methotrexate, Imuran morphine, precs, ect they all made things way worse;( I was hostipalized for years all the time, I had no quality of life.
When my mom died 4 months after I had my first bowel resection I said no more.
I couldn't do it anymore I wanted to die. I had a colonoscopy and the sugary didn't work, so I was in sever pain for years and grieving my moms death, not a good combination.
I decided to take my own health into my own hands. I was acute at the time but determined!!! I started researching how to get nutrients in my body to help calm down the inflammation, I was hospitalized just for the psoriasis I couldn't walk for three weeks, in a wheel chair. Thanks remicade. I know this isn't the case for everyone but this was my experience. So knowing that the dr do not see a correlation between what we eat and how are bodies function, blows my mind but that's what happens when you only take 40 hours out of 7 years on nutrition;(
I started to see a fantastic holistic psychologist, a holistic nutritionist, I was walking doing very light therapeutic yoga, and after a while things started to change. I was able to leave the house I had a bit more energy, because I was getting nutrience I never had before. I was very carful , my gastronologist my family dr, where all on board. Instead of taking a ton of narcotics I smoke medicinal marijuana for pain/or anxiety but I rarely have to do that now. My depression has lifted my anxiety minimal, I have 0 psoriasis, my hair grew back, my nails, I have lost 70lbs naturally not from having to starve myself because I was sooo incredibly sick. I decided after seeing positive results to go back to school for culinary nutrition, I had to learn how to cook with all of these natural whole foods, it took time, it's all trial and error. I started taking a product that was just fruits and vegetables in these little capsules, they are giving me all the nutrience I need without having to eat raw kale everyday, although I do love it just cooked, lolI have incredible bowel movements now, I'm talking a foot and a half normal poops everyday. That alone is priceless, I have more energy and that sparkle that I had lost for 15 years is back;))))
I just want all of you to know that there is always hope, we are not doomed, we are beautiful powerful people who just happen to have a really shitty disease.
With pain comes great strength!!!
If you ever want to talk message me, I love listening to people and there stories as well
Thank you for reading this post;))))
 
I have had a shity day literaly today. Which is quite unusual for me these days. Oh well got the loperimide out again...☺.
hope everyone feels better soon 💕
 
You too , Mandy. I was sore in my rectal area earlier and was feeling I couldn't empty myself. Is this time to use the Levsin?
 
Thanks Ron.. i would say ye it maybe time to try the Levsin. Hope it helps. Can you eat prunes ? they are a good laxative n natural. 💕
 
Today was a good day. Went to work and talked to my bosses. I ran out of sick days but still have fmla. Told them i was talking to my doctor and was needing time off. Was told to set up my appointments and they had no problem with me taking those days off that they just want to see me healthy. Relieved alot of stress. After 5 days off last week my joints were good until 3/4 of my shift.
 
2010mustang said:
Today was a good day. Went to work and talked to my bosses. I ran out of sick days but still have fmla. Told them i was talking to my doctor and was needing time off. Was told to set up my appointments and they had no problem with me taking those days off that they just want to see me healthy. Relieved alot of stress. After 5 days off last week my joints were good until 3/4 of my shift.
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Hi yep my joints ease while off work. When i was off for 3/4 mths with op they were pretty good then as soon as back at work within in the day they started to ache again. Hugs 💕
 
Utter crap today. I'm trying not to go all pessimistic blaming meds, but last 8 weeks has consistently involved migraines mid-week lasting 12-30 hours following MTX injection. Doesn't help that migraine days usually means not eating very well, not being able to tolerate prednisone or painkillers like tylenol till later in the day, not keeping down liquids seems to just make it 10x more complicated. All that said, I have some very kickass centerpieces for Thanksgiving dinner that were a blast to make and so worth it even though I know I will be finding glitter around the house for months.
Here's to hoping my man and roommate will step it up tonight after they get home from work with cleaning and prep for hosting tomorrow's dinner! Already got one text saying they're intending to clean/ rearrange furniture, so very promising that help will arrive!
 
My shot is usualy abit sore. Can ache for a day or so too. But then im that skinny theres no meat to soften the blow as it were 😯
 
ronroush7 said:
We are having an extended Thanksgiving tonight. I hope my stomach is up for it.
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Hey, you, Ron's stomach - yeah I'm talking to you - You better behave tonight. Thanksgiving is the greatest and no one likes when their body is being a pain, especially during the holidays.

I think you're good to go :) Hope you enjoy it tonight! Leftovers again here, I have a feeling we'll be eating creative variations of Thankgiving food stuffs for a good week.
 
HAPPY BELATED THANKSGIVING EVERYONE!!!!! I want you to know, i did go on vacation after all...and had fun...setons and all! I am thankful for the strength we all have to NEVER give up!!! We are an amzing bunch of fighters!!!!! LOVE TO ALL!!!😀😀😀
 
penhow45 said:
HAPPY BELATED THANKSGIVING EVERYONE!!!!! I want you to know, i did go on vacation after all...and had fun...setons and all! I am thankful for the strength we all have to NEVER give up!!! We are an amzing bunch of fighters!!!!! LOVE TO ALL!!!😀😀😀
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Same to you.
 

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