Hey there,
As with many others here, wanting to share my story in a supportive forum with other people that understand this disease and what we're going through.
I was first diagnosed with Ulcerative Colitis in 2005 after having a month of pain, bloody and black diarrhea, and complete loss of appetite (didn't want to eat anything as I knew it would go right through me). Had a colonoscopy and was told I had UC and thus began my IBD adventure and complete change of diet and daily medications, henceforward. A month after diagnosis, I ended up in the hospital for a week with excruciating pain in my upper abdomen. After a multitude of tests, was discovered I had a duodenal ulcer. Was sent on my way with some pain meds, continuation of Asacol for the UC, and prednisone for duodenal ulcer.
Went about life as normal for the last 10 yrs, having mini flare ups here and there, as I figured came part and parcel with this condition. Knew that I would suffer if I ate certain foods, but would make the decision based on how much I was willing to deal with. I really love dairy and fruits and vegetables, so would cut out as best as possible, but sometimes, I just really felt like having a salad! Lol
Skip to Feb 2015 - having numerous and extremely painful bowel movements...debilitating me...cannot sleep, cannot eat, cannot work, cannot take care of my 7 year old son. Go in to the hospital where I go through another set of tests, including a colonoscopy, and discover, I actually have Crohns. A week in the hospital, dealing with a team of Dr's, a new one every day...on IV steroids for the flare and morphine for the pain. Eventually get the pain under control enough that I can be discharged from hospital. Go 2 weeks on the tapering prednisone and original symptoms of terrible pain and numerous bowel movements come right back. Back to the hospital I go...am told by my GI that I have become steroid dependant and so need to go back to the original dosage...a reset. So, I do...Next day, back in the hospital with pain so severe I am curled in a ball, sobbing and trying to breathe through the pain. Am sent home, after receiving some morphine for the pain, with some Percocets. 3 days pass, Percocets are doing nothing for the pain and I'm still going to the bathroom repeatedly...still can't function. So, I decide it's time for a 2nd opinion, as I am not happy with the care I've recently received...feeling like my symptoms/issues/concerns were not heard and I was just dismissed by being given some drugs. Went to a different hospital and requested to be seen by new GI doc that is based out of there...which I had done previous research on and he is touted as being the #1. Am admitted again, for another week...sigmoidoscopy, CT, MRI, x ray...no perforations in bowel, so good news! But, pain is still through the roof and so are my lab results for inflammation. IV steroids and morphine again...but this time, a new plan of attack! Am started on Imuran and my first dose of Remicade. Terrifying at first, when dealing with the initial shock of Crohns vs UC all these years, and now the outlook of lifetime medication and infusions. But, no surgeries in store as of yet, so have that as a positive view for sure.
Unfortunately, given my multiple hospital visits and time away, lost my job in the process.
Huge defeat while dealing with all this, but luckily, I have a very supportive family and fiancé that are helping me through everything.
Am now a week out of hospital, still on the prednisone for the flare, imuran, percocets, vit D, and pentaloc (acid reflux med)...with my next course of Remicade scheduled for next week.
Felt much better about my discharge this time, was feeling better and with being under the new Dr's care and the treatment plan worked out, was feeling quite positive about getting this flare up under control and starting to get back to a semblance of "normal". Have now cut Dairy out of my diet (to an extent...still eat hard cheese in moderation, and some yogurt and ice cream)...discovered soy milk also does not agree with me, so almond milk it is! Cutting out other foods that I have seen said are difficult (like tomatoes, beef, fast food, etc.) Have been sticking to things I know will get me through - like white bread and peanut butter, but wanting to also see what else my body can handle. Tried a small salad today and some pasta with a rose sauce...definitely paid the price for that...as I'm still dealing with this flare, my tummy was not ready for that yet I guess...too soon. Sooooo, back to the staples of white toast with PB, chicken, white rice, fish and pasta with no sauce...fun times...lol
Trial and error for the next few months I guess, along with a food journal!
Glad to have found this forum and support of a community with understanding of IBD issues. Have looked through some other threads - food, recipes, stories, etc. and appreciate the opportunity to share and learn
As with many others here, wanting to share my story in a supportive forum with other people that understand this disease and what we're going through.
I was first diagnosed with Ulcerative Colitis in 2005 after having a month of pain, bloody and black diarrhea, and complete loss of appetite (didn't want to eat anything as I knew it would go right through me). Had a colonoscopy and was told I had UC and thus began my IBD adventure and complete change of diet and daily medications, henceforward. A month after diagnosis, I ended up in the hospital for a week with excruciating pain in my upper abdomen. After a multitude of tests, was discovered I had a duodenal ulcer. Was sent on my way with some pain meds, continuation of Asacol for the UC, and prednisone for duodenal ulcer.
Went about life as normal for the last 10 yrs, having mini flare ups here and there, as I figured came part and parcel with this condition. Knew that I would suffer if I ate certain foods, but would make the decision based on how much I was willing to deal with. I really love dairy and fruits and vegetables, so would cut out as best as possible, but sometimes, I just really felt like having a salad! Lol
Skip to Feb 2015 - having numerous and extremely painful bowel movements...debilitating me...cannot sleep, cannot eat, cannot work, cannot take care of my 7 year old son. Go in to the hospital where I go through another set of tests, including a colonoscopy, and discover, I actually have Crohns. A week in the hospital, dealing with a team of Dr's, a new one every day...on IV steroids for the flare and morphine for the pain. Eventually get the pain under control enough that I can be discharged from hospital. Go 2 weeks on the tapering prednisone and original symptoms of terrible pain and numerous bowel movements come right back. Back to the hospital I go...am told by my GI that I have become steroid dependant and so need to go back to the original dosage...a reset. So, I do...Next day, back in the hospital with pain so severe I am curled in a ball, sobbing and trying to breathe through the pain. Am sent home, after receiving some morphine for the pain, with some Percocets. 3 days pass, Percocets are doing nothing for the pain and I'm still going to the bathroom repeatedly...still can't function. So, I decide it's time for a 2nd opinion, as I am not happy with the care I've recently received...feeling like my symptoms/issues/concerns were not heard and I was just dismissed by being given some drugs. Went to a different hospital and requested to be seen by new GI doc that is based out of there...which I had done previous research on and he is touted as being the #1. Am admitted again, for another week...sigmoidoscopy, CT, MRI, x ray...no perforations in bowel, so good news! But, pain is still through the roof and so are my lab results for inflammation. IV steroids and morphine again...but this time, a new plan of attack! Am started on Imuran and my first dose of Remicade. Terrifying at first, when dealing with the initial shock of Crohns vs UC all these years, and now the outlook of lifetime medication and infusions. But, no surgeries in store as of yet, so have that as a positive view for sure.
Unfortunately, given my multiple hospital visits and time away, lost my job in the process.
Huge defeat while dealing with all this, but luckily, I have a very supportive family and fiancé that are helping me through everything.Am now a week out of hospital, still on the prednisone for the flare, imuran, percocets, vit D, and pentaloc (acid reflux med)...with my next course of Remicade scheduled for next week.
Felt much better about my discharge this time, was feeling better and with being under the new Dr's care and the treatment plan worked out, was feeling quite positive about getting this flare up under control and starting to get back to a semblance of "normal". Have now cut Dairy out of my diet (to an extent...still eat hard cheese in moderation, and some yogurt and ice cream)...discovered soy milk also does not agree with me, so almond milk it is! Cutting out other foods that I have seen said are difficult (like tomatoes, beef, fast food, etc.) Have been sticking to things I know will get me through - like white bread and peanut butter, but wanting to also see what else my body can handle. Tried a small salad today and some pasta with a rose sauce...definitely paid the price for that...as I'm still dealing with this flare, my tummy was not ready for that yet I guess...too soon.
Sooooo, back to the staples of white toast with PB, chicken, white rice, fish and pasta with no sauce...fun times...lolTrial and error for the next few months I guess, along with a food journal!
Glad to have found this forum and support of a community with understanding of IBD issues. Have looked through some other threads - food, recipes, stories, etc. and appreciate the opportunity to share and learn
