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Crohn's Disease Forum » Ulcerative Colitis Forum » Please help me get into remission


10-21-2017, 02:13 AM   #1
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Please help me get into remission

Hello everyone, I was recently diagnosed with severe Ulcerative Colitis. My first flare started in early September 2017. Im a 34 year old male. I lost 21 pounds in the first 2 weeks. I now weigh only 140. I weighed more in high school. I'm still in a bad active flare. I'm desperate for help. I saw my doctor again today. She said I need infusions of Remicade (which I can't afford) because my UC is so severe, and Lialda only treats moderate to mild UC. My active flare has lasted about a month and a half.

Please help me. How do I get this disease under control?

My GI doctor has me on Lialda 4 pills once daily and Prednisone 40mg once daily. I have been on Lialda for a few weeks and Prednisone for 2 days. I just started taking vitamin D. Lialda helped mask the symptoms some for only about a week and a half.

Now I can't sleep and my frequency of diarrhea has increased to as often a every 15-20 minutes. Occasionally its every hour when I am lucky. I wake up many times all through the night because of the frequent diarrhea. If I do get sleep its segmented and isn't enough to help the healing process of my colon.

I'm following doctors orders with my no/very low fiber and low residue diet. I'm also taking probiotics once daily, staying away from sugary foods, low sugar yogurt, drinking plenty of water to stay hydrated. Even though I am following the special diet very closely it doesn't seem to be helping me get into remission. I eat several small meals throughout the day as recommended. I have tried peppermint oil mixed in water, peppermint tea, and ginger tea. I'm planning on getting a juicer next because I feel at this point I need more nutrients than my diet is allowing and my body isn't absorbing.

This disease has completely taken over my life. I am prisoner to the toilet. My anxiety, stress, and depression are at an all time high. I have had suicidal thoughts almost every day. How can I avoid stress when this disease causes tons of it.

I am at a loss as to how you guys and gals have managed to continue living your lives and functioning so well with this disease for so many years. I'm not so strong. I feel completely defeated and doomed. I see no chance in my recovery even to a remission state because nothing is truly working.
10-21-2017, 07:52 AM   #2
Crispix73
 
Join Date: Jul 2016

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Hello everyone, I was recently diagnosed with severe Ulcerative Colitis. My first flare started in early September 2017. Im a 34 year old male. I lost 21 pounds in the first 2 weeks. I now weigh only 140. I weighed more in high school. I'm still in a bad active flare. I'm desperate for help. I saw my doctor again today. She said I need infusions of Remicade (which I can't afford) because my UC is so severe, and Lialda only treats moderate to mild UC. My active flare has lasted about a month and a half.

Please help me. How do I get this disease under control?

My GI doctor has me on Lialda 4 pills once daily and Prednisone 40mg once daily. I have been on Lialda for a few weeks and Prednisone for 2 days. I just started taking vitamin D. Lialda helped mask the symptoms some for only about a week and a half.

Now I can't sleep and my frequency of diarrhea has increased to as often a every 15-20 minutes. Occasionally its every hour when I am lucky. I wake up many times all through the night because of the frequent diarrhea. If I do get sleep its segmented and isn't enough to help the healing process of my colon.

I'm following doctors orders with my no/very low fiber and low residue diet. I'm also taking probiotics once daily, staying away from sugary foods, low sugar yogurt, drinking plenty of water to stay hydrated. Even though I am following the special diet very closely it doesn't seem to be helping me get into remission. I eat several small meals throughout the day as recommended. I have tried peppermint oil mixed in water, peppermint tea, and ginger tea. I'm planning on getting a juicer next because I feel at this point I need more nutrients than my diet is allowing and my body isn't absorbing.

This disease has completely taken over my life. I am prisoner to the toilet. My anxiety, stress, and depression are at an all time high. I have had suicidal thoughts almost every day. How can I avoid stress when this disease causes tons of it.

I am at a loss as to how you guys and gals have managed to continue living your lives and functioning so well with this disease for so many years. I'm not so strong. I feel completely defeated and doomed. I see no chance in my recovery even to a remission state because nothing is truly working.

You most likely need to be on something stronger than lialda. I was so afraid to take that next step, that I let myself flare on and off for over a year. Im now on humira and am feeling better than I have in a long time.

Do you have insurance? Most of the medications offer copay assistant programs. I only pay $5 a month for my humira prescription. I'm pretty sure remicade has something similar. You could look into it.

If the biologics aren't an option, talk to your doctor about 6mp or imuran. They're not as fast acting as the biologics, but they can be helpful.

I would call your GI and talk about all of your options. The lialda clearly isn't enough to keep your disease under control and your quality of life is not good right now. With the right medication, you should be able to lead a normal life.
10-21-2017, 09:47 AM   #3
ronroush7
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Location: vienna, Virginia

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You said you can't afford the Remicade. You might look into a program called Remistart.
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-21-2017, 11:08 AM   #4
Lizzie
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Join Date: Jun 2011
Location: East Midlands

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I think you need to give the pred time to work, I think it takes a few weeks. I was having an awful time like you a couple of years ago but the steroids have calmed things down massively. It took a lot longer than a few days, though, I can't remember how long.
10-21-2017, 01:02 PM   #5
ronroush7
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I think you need to give the pred time to work, I think it takes a few weeks. I was having an awful time like you a couple of years ago but the steroids have calmed things down massively. It took a lot longer than a few days, though, I can't remember how long.
Agree

10-21-2017, 02:38 PM   #6
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Thank you all for your quick replies. I currently do not have health insurance. I have signed up for it however it won't take effect for a month and a half. I'm going to continue with the Liailda and Prednisone because it's all I have for treatment at the moment. Hopefully Prednisone starts to work soon. My GI mentioned she would contact her Remicade supplier to seek financial assistance for me with that drug. I applied for medicaid but was declined.

I will try to get on disability and then re apply for medicaid. Based on my research VA is one of the most strict states getting approved for either and they both must be applied for separately unlike many states where medicaid is automatic once approved for disability.

For me unfortunately there is next to no quality of life at the present. Each day I get more stressed out, increasingly anxious and worried about not making it into remission or even just finding some way to make this manageable.

I think my trigger is stress related. My first flare began shortly after some very stressful life events. Sadly almost 2 months ago I had to have my cat put down due to chronic mega colon. My best friend adopted her right after I lost my house. We provided treatment and managed her symptoms best we could for a long time. She was showing signs of pain and discomfort. We had to give her daily enemas and it was truly too much to put her through any longer.

Days after she was put down I helped the same friend move from out of state back to VA. The day of the move after hours of heavy lifting is when my first flare began. The drive back to VA was miserable, having to make urgent bathroom stops (painful bloody diarrhea) every 30 minutes to an hour at best.

I have been pretty much homeless for about a year. Sleeping in my vehicle most nights even through all last winter and summer. Fortunately my friend I helped move has given me a temporary place to stay until I can get this disease under control.

My friend's mom is now putting pressure on both of us for me to leave and get my own place, or pay half the rent. I can't afford either. I do whatever I can to help out around the condo from cleaning to making minor repairs, and doing maintenance etc when I'm feeling well enough.

NOVA is just too expensive for me to rent even a small room in a house etc. The money I have left must be saved and used for my food and ongoing treatment and medications. I can't sleep in my car if I must go to the bathroom every 15-30 minutes. As soon as I'm physically able I'll be back to sleeping in my car which I have gotten use to. I'll be looking for better sleeping arrangements which likely means I'll have to move to a more affordable area or even a different state.

Last October my father asked me to be at their home to pet sit their dog and be their on call designated driver. They went to a halloween party at a bar. He decided to drive my mom home himself when they were both clearly too intoxicated to drive. My mom was suffering alcohol poisoning and was having difficulty breathing. She couldn't move from the bathroom floor. I called 911 to get her help.

My drunk father stood their laughing at the situation. He demanded I care for her. He went to the living room and tried to figure out how to turn on the TV but her was too drunk to do so. He is an alcoholic and was very drunk.

Under direction of the 911 dispatch I had to leave my moms side to secure their large dog in a room upstairs and move furniture to clear a path for the stretcher and paramedics. I gave my father the dispatchers instructions to watch her condition and call 911 if her condition worsens in any way. He laughed at me, and then his face turned bright red, veins in his neck got all tense. At that moment he attacked me threatening to kill me. I had to fight him off to defend myself while I was in the middle of trying to care for my mom as the ambulance was in route.

The police would not arrest him. They only noted in the report that he was clearly drunk. My father lied to everyone and said I attacked him. I went to the magistrate that night and the following day until they he finally was convinced my story was true, as bruises started to show on my face.

My mom wasn't aware of my father attacking me. I explained this to her in great detail when she was well. To my surprise she arrived and stood by him offering him full support on the day of court. She wouldn't even look at me in the court room or waiting area.

This was a major turning point in my life where I realized my mom didn't even have my back even after I helped save her life. I was asked to be there to help them and they both ended up hurting me. This has greatly affected my mental health.

My father hired the best attorney he could afford. The judge ordered him to anger management classes, and some type of AA classes, drug tests, restraining order, and probation. To the say the least I was not satisfied. I expected him behind bars. instead he gets a slap on the wrist. I expressed this to the state prosecutor who could have cared less. So long as he won the case that's all he cared about.

This isn't the first time my father physically abused me or my brother. He also has physically and mentally abused my mom in the past. When I was in elementary school he cheated on my mom, had a daughter with the women in different country all while we lived overseas when he worked for the CIA. The judge didn't seem to care about his past history of family abuse as those events happened too long ago.

I haven't been able to manage all of this accumulated stress. Maybe the sum of it all and the depression and anxiety it has caused me has brought on my IBD. I have read its environmental, stress and autoimmune related. It seems like I have all of those factors.
10-21-2017, 04:38 PM   #7
Lizzie
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Join Date: Jun 2011
Location: East Midlands

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I'm so sorry, it sounds like you have an awful lot on your plate regardless of whether the stress and the IBD are connected. Families aren't always like the Waltons, are they. I wouldn't give up hope of getting this horrible disease under control, though. I felt just like you a couple of years ago and I was obsessed with the idea I was in a downward spiral with major surgery inevitable. However, after many months of illness and pain, things improved. My GI had wanted me to go on biologics, as I was so poorly, but now I am coping well with just Asacol and Salofalk (comparatively mild drugs).
10-24-2017, 08:11 AM   #8
jonny83d
 
Join Date: Oct 2017
im new and just posted my finding, have a read of my thread
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