Hi.
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Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Hi.
- Thread starter nikhiljayswal
- Start date
fuzzy butterfly
Well-known member
Hi and welcome . Sorry you need to be here tho. Feel free to post any questions or offer advice if you wish.. we are a helpful caring bunch of people here. Wishing you best wishes 
scottsma
Well-known member
- Location
- Tynemouth,
Hello and welcome to the forum.You will get lots of advice and support from members.Also we would like to hear your story,because everyone has something of interest to share.There are also some members, who are of your nationality,who I'm sure would like to share crohns tales with you.I hope you are feeling well today.
Strong silent type 
Welcome!
I was diagnosed with Crohn's Disease in the terminal ileum and Crohn's Colitis in September of 2013. I went into remission on Budesonide and Mesalamine. I relapsed in October 2014 and have been flaring since then. I have been diagnosed with steroid refractory Crohn's. I have already tried a lot of medicines to no effect. Starting January 1, I started Adalimumab therapy along with weekly 20 mg Methotrexate injections. I am also tapering off prednisolone, currently at 20 mg and the plan is to taper by 5 mg every week. The problem is I have been having too many bowel movements in the nights since the taper and is becoming unmanageable for me having a body weight of just 40 kgs and height of 6 feet. I haven't slept properly in approx. 2 months now. I fear taking painkillers because of addiction. I have some degree of fecal incontinence and rectal impairment too. I do not take sleeping pills due to fear of pooping my pants. In terms of support, I am severely lacking. My father has already abandoned me due to domestic problems and me being such a financial burden on him. My little brother works to earn for the family that now consists of me, him and my mother. My mom is in deep stress due to my disease. She is broken emotionally and physically too having to take care of me and my brother and the house all by herself. How long should I wait before surgery? I have been considering it since months now but the doctors wanna prevent it because of my young age. But it is becoming difficult for me and my family to fight this. Please feel free to ask questions. So much has happened to me in a year that I feel tired describing all of it. I could fill a 100 pages. So right now, I will complete one month on Adalimumab and Methotrexate on 29th January. I am not seeing any response apart from 80% firm stools which is becoming more of a problem as my weak intestines seem to be unable to handle them. More problematic is rectal bleeding every few days. I am taking painkillers but not at the required dosr due to fear of addiction. I have a long list of problems, both disease related and others. I request you to give me as many suggestions as possible. I want to survive this, but circumstances are against me. Please help.
Some people have very good results with the Adalimumab and Methotrexate. It does take a little while for it to "kick in" and decrease your symptoms. Make sure you have a good Gastroenterologist who can monitor your symptoms and do the tests that are needed to check that the new medication is working. Surgery won't "cure" Crohn's and is mostly done when narrowing from strictures becomes a problem. You can work with a good GI doctor and colorectal surgeon who can recommend when surgery would be appropriate for you. Don't worry so much about your mom and brother. Focus on getting yourself healthy, it is only when you are feeling better that you will be able to help them. I'm sorry you are having to deal with this. We are here for you to share and vent.
It is already worse. I went to the toilet a lot yesterday night. Had rectal bleeding too. Took a painkiller, normaxin and avoiding food. I am feeling very light headed now. Tingling in my hands and feet. I fear I might pass out in the toilet today. Something bad might happen. I already had a suicidal episode a few days back because I took a painkiller and an antidepressant. My mom beat me that day. I have been asking for psychiatric help since months, but my mom won't listen. She thinks I am giving her trouble deliberately. My story is too sad to tell. That is why I do not tell people. It will only bring sadness to the people who listen to it. When my own parents can't take care of me, who will?
@Eridon2002 : I need someone to help me through bad moments. That's it. But my mother cannot spare time to talk to me about my problems. My brother is young and not so mature. How do I convince her to have a backup plan for emergencies especially in my case when my family has to fight this disease alone? This is the first time I am sharing my problems online. I am bearing this disease alone while I can. I never know if I'll make it through to the next day.
I just talked to my mom about it because I am feeling very bad today. But she just walked out of the room. Pray that I make it till Friday when I see my doctor. I am going to plead him to let me stay in the hospital.
Talking about her like this to you is also making me feel bad. She is going through a lot but she's not tough enough neither wants to be. She always complains how she is helpless and in stress mentally and physically and she is. But the fact is when the going gets tough, the tough gets going. When I suggest she get help, she'll ignore it. It is impossible to get past her ego that prevents her from seeking help and impatience.
fuzzy butterfly
Well-known member
Hi I am so sorry for all you are going through, what a hard time you are having. It seems to me that your mom is also struggling to deal with your health problems as well as all the other issues that are going on.
It must be very hard for you, not getting the support you need, and feeling so sick. Please let your doctor know how bad things are for you and see if you can be admitted to hospital for some intensive treatment to try and get this under control. Once you get the right treatment things will be better for you and your family. I am sending you hugs and love and support. I hope you can get this sorted out soon. Best wishes
It must be very hard for you, not getting the support you need, and feeling so sick. Please let your doctor know how bad things are for you and see if you can be admitted to hospital for some intensive treatment to try and get this under control. Once you get the right treatment things will be better for you and your family. I am sending you hugs and love and support. I hope you can get this sorted out soon. Best wishes
I'm so sorry you are struggling so much right now. Others are right that it can take some time for humira to reach therapeutic levels. Can you call the GI and explain your ongoing symptoms. It might be that he moves your appt up or requests that you go onto the hospital through emergency.
If you feel you are in a fragile position it is important to let someone know. If your Mom is unable to respond to your needs for support then contacting a professional is a good option. Family dynamics and struggles can make you feel isolated and if your health is poor it can lead to further stress and depression. If you are concerned that you are at an emotionally fragile point that may lead to self harm please call your doc or report to someone who can support you. Bypass your mom if she is unavailable to give emotional and physical support at this time. Your health and emotional state are the most important thing.
Sending hugs.
If you feel you are in a fragile position it is important to let someone know. If your Mom is unable to respond to your needs for support then contacting a professional is a good option. Family dynamics and struggles can make you feel isolated and if your health is poor it can lead to further stress and depression. If you are concerned that you are at an emotionally fragile point that may lead to self harm please call your doc or report to someone who can support you. Bypass your mom if she is unavailable to give emotional and physical support at this time. Your health and emotional state are the most important thing.
Sending hugs.
fuzzy butterfly
Well-known member
Ps we are always here for you, if you are feeling bad or just need to vent. We are here to support and help as best as we can.
My GI, his associate, told me, right before my surgery, that the disease always comes back. Did you call the ER?
Praying.
I know that. My doctors told me that too. But I have reached a point where I cannot take care of myself. I myself am not sure what to do. I waited 15 months for various meds to work and got here. I just want some immediate relief. I wonder how long should I wait for biologic to work?
My doctor said to expect response in one month. I meet him every two weeks. Last time I told him it was okay and there was some improvement in stool quality. The improvement is ongoing but my frequency is beyond a level I can manage. 12 - 20 times in a span of 6-7 hours or more. I think the rate at which my condition is deteriorating is higher than the rate at which meds work. I stay fine as long as I am on a 40 mg dose of pred. As soon as the taper begins, things worsen very fast. This Friday it will be one month. So I am confused. If he tells me to wait some more, what should I do?
Will pray too hope you all have better days
fuzzy butterfly
Well-known member
I agree with Ron . Please call your doctor asap ...
Humira(adalimumab) can take 3 to 4 months to reach full efficacy sometimes as long as six months.
It may be that you need to have the Doc increase your steroid back up giving more time for the humira to start working.
For some humira works very quickly for others it takes some time and even then it may need to be adjusted to every 10 days or weekly and monitored for a period of time before deeming it a failure. My son, age 19, is on weekly humira and 25mg injection form of methotrexate. He has been on weekly for a month. He was on humira bi- weekly as well as methotrexate injections for over 10 months with no improvement in active disease(this was discovered in the visual changes of two colonoscopy six months apart).
You also may want to discuss exclusive enteral nutrition(EEN) with your GI. It is formula feed only for a period of time but can hexpect as well as steroids do without all the nasty side effects of steroids.
It may be that you need to have the Doc increase your steroid back up giving more time for the humira to start working.
For some humira works very quickly for others it takes some time and even then it may need to be adjusted to every 10 days or weekly and monitored for a period of time before deeming it a failure. My son, age 19, is on weekly humira and 25mg injection form of methotrexate. He has been on weekly for a month. He was on humira bi- weekly as well as methotrexate injections for over 10 months with no improvement in active disease(this was discovered in the visual changes of two colonoscopy six months apart).
You also may want to discuss exclusive enteral nutrition(EEN) with your GI. It is formula feed only for a period of time but can hexpect as well as steroids do without all the nasty side effects of steroids.
Sorry to hear this Nikhil. Try talking to your mother and explain the nature of your disease. I know its easier said when the situation is bad but honestly I cant think of anything else. Has your doctor told you about Infliximab (Remicade)? I think it works faster than Humira, in terms of showing improvement. It worked for my husband. Sending good wishes and prayers your way.
NEVER give up. We are all here for you. Vent out here as much as you want and post whenever you want. No bad thoughts, think you are definitely going to get better and trust me, you WILL.
Take care.
NEVER give up. We are all here for you. Vent out here as much as you want and post whenever you want. No bad thoughts, think you are definitely going to get better and trust me, you WILL.
Take care.
Amen
I am fine right now. Just needed to talk to someone. I'll see him on Friday and discuss everything in detail. Let's forget about my problems now and make jokes. I'll be fine. Love and laughter are a source of greater courage than anger and worry.
Thanks to everyone for talking. I am too introverted to share my problems, but I think I will change this habit. This forum and its members are really awesome.
Very true Nikhil. I joined here when I was heartbroken to see my husband suffering. I got so much support and most importantly, I gained confidence that he will get better soon. Not to be sadistic, but sometimes you feel better when you know there are others in the same boat too 
This is the best place I have ever seen. My husband is now a lot better but I am still a regular here. I like it when I am able to respond to someone's issue based on my own experience.
This is the best place I have ever seen. My husband is now a lot better but I am still a regular here. I like it when I am able to respond to someone's issue based on my own experience.
fuzzy butterfly
Well-known member
Well i do belive in laughter being a good and positive thing. Maybe you can check out our Jokes and humour threds.
That being said do please keep your doctor informed on how you are on your worst days even if its more how you feel mentaly.
Also check out our last one wins thread it is quite funny and we tease each other a bit just for a chuckle. We do try and be upbeat a lot on many of the threads .please feel free to look around the site and join in on any that take your fancy. Even the whats your weather like thread has its amusing side.
So as i say have a look round n join in . Take care nikhil
That being said do please keep your doctor informed on how you are on your worst days even if its more how you feel mentaly.
Also check out our last one wins thread it is quite funny and we tease each other a bit just for a chuckle. We do try and be upbeat a lot on many of the threads .please feel free to look around the site and join in on any that take your fancy. Even the whats your weather like thread has its amusing side.
So as i say have a look round n join in . Take care nikhil