New to this forum and need advice

[mpartridgeferrari]

Hello everyone, I am glad to finally find this forum and hope that I can both help and be helped here. I was diagnosed with Crohns Disease at the age of 18. It took almost a year and alot of pain to figure out what exactly I had, which I am finding out is the case with alot of people here. Anyway I am now 33 years old and have been thru alot throughout the last 15 years. I take remicade treatments every 8 weeks and have tried just about every medication that is available for this disease. I have also battled with drug addiction during this time because of both physical and mental pain. I have taken narcotic pain meds everyday over the last at least 8 years and of course this has been a problem. It has caused a huge amount of stress on my family and has definetely effected my life in negative ways as any addiction usually does. I am under pain management by my doctor and take a pretty big dose of these pain killers everyday, along with getting them off the street at times when I take too many and run out of my prescription pills. I will say that despite all of the problems associated with drug addiction these pills absolutely 100% help me live pain free and help me make it thru my days as if I dont have this terrible disease, but like I said there are issues that these cause in my life that are not good. Unfortunately the people in my life mostly see the addiction part and dont really understand the pain and suffering that I would go thru without these. Like most people I would do anything to just be normal and not have to deal with having Crohns and unfortunately I found a way to do this with the pain meds but there are also reprocusions that come along with taking them. I am now at a crossroads and am really having a hard time with making a decision. I have recently been hospitalized several times and my GI doctor has informed me that it is probably in my best interest to have most of my intestines and my colon removed which would mean that I would have a colostomy bag for the rest of my life. Being a single 33 year old guy of course having a bag is not something that I want to deal with as I already have had a hard time mentally coping with this disease without that. I am able to continue to take pain meds under doctors care and could continue doing what Im doing for as long as I can but my family is really pushing me to do the surgery which is easy for them to say not being in my shoes and not completely being able to understand what exactly I go thru on a daily basis mentally and physically. So I guess Im looking for some advice and some suggestions. I would love to hear what you guys think and would really appreciate if anyone out there that has had this kind of surgery could kind of tell me how it works and what goes into living with a bag. If it was totally up to me I would not get it done just yet and would just continue to get remicade and take pain meds and try to get by for as long as I can, but my family is very important to me and they have been hurt repeatedly by my addiction problems. My main concern is that if I have had such a hard time mentally with my self esteem without having a bag, how will I be with a bag. Like I said before I am still single and already have a hard time even talking to women because of my issues. I know that this may sound stupid and that the smart thing to do is have the surgery and get off of the pain meds but when you are in this situation it is not just that simple to make this kind of life changing decision. Thanks for listening and Im really looking forward to your input.

 

[Crohn's 35]

Hi there and welcome to the forum! :bigwave: We do understand, and as much as being single and your age group, at 32 and a year of dx, I certainly didnt want even a resection at that time let alone a bag. When you are single, you think everyone is going to be turned off the bag, and fear of rejection because of the disease and face it, who really wants a bag? I think most people up to 50 would say no. CD has a depressive stigma attached to it because since there is not cure and so unpredictable, you worry what your future will be. Support means alot to us, not having it makes you even more depressed. Alot of people get addicted to the drugs because as long as they are out of pain they are happy at the moment. I dont have to tell you what pain pills can do to your liver and kidneys, but any med can damage anyone at anytime. There is nothing wrong with seeing a counsellor, most doctors recommend it, because this disease is do debilitating and not much awareness, it could help your self esteem.

Most of us know outsiders don't understand, but if they want to understand there are books easy to read and know how to help you cope. Hang in there, ask any questions, one of us can help you. Glad you are here!

 

[katiebel]

Hi there - My name is Katie and I am new on here also. I recently have had surgery and had partof my intestine's removed. I currently have a bag that I am living with. Although it is temporary and I will have it reversed in 3 months , the fear that one day it may be permanent scares me. Although Im dealing with it I have also been out on medical leave for a few aweeks now healing from my surgery. I have the same feeling about the pain meds. I am on those and a bunch of other things. But Im hoping the surgery will resolve my problem of feeling ill all the time and I don't need the pain meds anymore, but like you said it is hard to stop. I have read that living with a "bag" isn't so bad and you learn to cope and make the changes that you need just like living with Crohn's. Good luck to you. Katie.

 

[Jennjenn]

Hello Welcome

I do understand what you are going through. I did one of my internships for counseling in an inpatient drug and alcohol rehab center a while back. There were a few patients I had that started off with just an injury or an illness and simple pain meds became an addiction of taking more and more to cope with staying out of pain. I have to say that if you have the addiction it needs to be dealt with. Even if you have the surgery the addiction will still be there most likely. Having to deal with just having surgery alone...especially for one of the magnitude you are talking about is going to require the need to emotionally be able to cope with things. If you have the surgery the next day after it you will not be jumping around all ready to go on with a perfect life. There will be adjustments and time needed to recover. (I am sure you already know this I just feel bad that you are going through this) I would suggest like Penn stated to seek a counselor to help you get through this time. There is nothing wrong with seeing one. Yes we can be a support system for you and give you advice but going to a counselor will help you get that live feedback and development of coping skills that you need and more.
If you would like more help or answers from anyone here I am sure there will be an answer from one of us and or an ear to listen to you when you need.

 

[Christie]

Hi I am also new to this site, I also have a 'bag' and have had it for a year I am waiting t get it reversed but cant until my Crohns is under control,( I have had Crohns for 18 yrs since I was 17,) if I had to have it 'for ever' I know I would be ok with that, there are days when I feel a bit down about it but thats just when Im going out on a night out and all my friends are wearing tight clothes etc and I cant, but then I think about how well Iv been doing since getting it and that if I didnt I might not be here!

 

[mpartridgeferrari]

Thanks for the replies as every little bit helps. I failed to mention that the root of my pain has been dealing with anal fissures. I developed these around 10 years ago and they have been a real pain in the butt "lol" literally. My abdomonal pains are few and far between with the remicade treatments but the pain that I have to experience every morning when going to the bathroom is crazy. When it flares and the diarrea kicks in it is like nothing that I can even describe. This pain shoots down my legs and up my back. this is the main reason that I was put into pain management and started on pain meds which has led to my addiction. The worst part is that at times that I have tried to detox from the pain meds one of the side affects is diarrea which is increased because I do have crohns so I usually dont make it thru a day or two before I am forced to do something for the pain. It has really been a vicious cycle and I am having a hard time trying to figure out what to do. thanks again for the input and keep em coming, you never know when you are going to hear something that really helps.