• 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.

Just joined this forum, need support from others with same condition

Hi my name is Patrick and I live in northern virginia with my wonderful wife who I've been married to for 3 years. I am 35 years old.

I was diagnosed with Crohn's in 1998 and its been a battle ever since. Despite the pain, embarrassment, energy, money and hospital visits and surgeries I was able to graduate from Virginia Tech with a degree in History and find the love of my life 5 years ago. However, holding down a job for more than 2 years has been quite a challenge. I'm currently on Cobra and unemployment. Luckily, I have a very supportive family.

The past few months have been very hard. I have switched from Humira to Methotrexate and I am hoping and praying this will work. Not only for myself but for those around me that are very close to me, beginning with my wife of course. I didn't realize how great a toll the disease can take on your loved ones as well until I got married. Getting back to remission and returning to full time work would definitely take a lot of stress off a lot of my close relatives. I am sure my wife, parents, and in-laws are worried that when the kids come, I will be out of commission on those "bad Crohns days", hence unable to handle the responsibilities of a father until I get back on my feet. Anyone have fear or a reality of this? I know I will be a great father, in a way, having this disease had made me a lot more empathetic, generous, and wise. I look at the world where my priorities are, which are family, faith, taking care of my health, and enjoying life. I don't have so much expectation on myself to get that job or that promotion, because that just stresses me out and I get a flare up.

Also, I have had to take a lot of medicine which of course is hard on the liver. The pain has been bad that sometimes I have to take hydrocodone (vicodin), for my abdominal and joint pain. If its not that bad but I still cannot get out of the house I have Utram (tramadol). I think my family worries that these also will lead to addiciton or be really hard on the liver. But I feel like I would rather take them and experience life, rather than not taking the "narcotic" pain killers and being in bed rolling around in pain all day. So I wish people would understand why I need to take it sometimes. I think they are worried because of all the negative press opiates/opiods have recieved in the past few years.

So I'm very glad to be on my first forum for crohn's (it only took me 15 years lol), and if anyone has comments or advice on being able to be a good parents, and taking medication for pain please help. Thank you and I hope you all are keeping hope alive even in your painful days. -Patrick
 
Hello Patrick and a very warm welcome to the forum, I'm glad you found us even if it took 15 years lol :).

I just wanted to comment on the opiates you mentioned, please don't have concerns about taking them, I also take them along with neurontin everyday. I believe that when we need something like that when we have real pain then we won't become addicted, we don't choose to want to take them but our body decides that we need them, I would love to not need them but as you say, I would rather take them and have a life than be rolling around in bed in agony. For others who have not experienced that type of pain it can be difficult to understand :(. If they could have a day in our shoes they might change their minds about them.
Thanks for sharing your story, please keep in touch, best wishes and a big hug. :ghug:
 
I take Vic for pain and occasionally Ultram will keep the meanies away. And yes, potential addiction is always a concern, the alternative is abdominal pain and severe joint and muscle cramping which truly disrupts most activities. So friends, I take it these meds but with a guarded amount of caution
 
I take Vicoden for pain several times a week. I haven't had any problems with addiction. It's not really an addictive drug, but can create a dependency if you take it all the time just for the feeling of it. When it's used for pain, though, I don't think it creates that dependency. I only take it when my pain is bad enough that I feel I need it to function. As long as you aren't overdosing on it, or taking acetominophen at the same time as the Vicoden, your liver should be fine. It's the acetominophen level that can damage the liver.
 
Hi everyone, my name is Mike and I have had Crohn's since 1983. At this time I feel like I don't even belong on a Crohn's forum because I'm doing so well on my Cimzia. But as a read all of the stories on this site I realized that I went through all the same things that most of you are going through now and let me say my heart pours out for each and every one of you. Yes I did have a colon resection and it was the best thing I ever did for this horrible condition. I can say this, I feel that if you stated at an early age with Crohn's it seems the older I get the better the condition gets. Like most all of you I have been on every medication that was available during the 80's and 90's that just kept me going but not putting me in remission. When my doctor put me on Remicade that was the best, as it put me in full remission for the first time in my life. After two years on that I started to have reactions to it so they had to stop the infusions. That is when I was put on Cimzia and it is working for me just as well as the Remicade did. One thing that I would like to ask is that even though my Crohn's is in full remission my quality of life isn't all that great. I really don't feel like going out and doing anything, I take naps when I'm off of work but they don't seem to help. My hip joint hurt when I sleep at night and I don't sleep all that well either. Any information that you could give me on this would be so helpful. I really wish I would have found this forum years ago. My hopes, prayers and good dreams are with all of you.
 
Fatigue and joint pain are also common in people who have Crohn's. Even when the GI symptoms are lessened or gone, the fatigue seems to be ongoing. Are you exercising? Often regular exercise can help stimulate the brain and body to fight fatigue, and regular, low-impact exercise can also sometimes help with joint pain.
 
Thank you mccindy, No I don't get that much excerzise these days because I now work in an office / communication Network environment 12 hours a day. You are right that it will help and I was pondering the though of getting back on the treadmill again. Now that you have said that this will help I'm on my days off and tomorrow I'll get going with the excerzise. Thanks again that is the motivation that I needed.
 
I'm getting married in just a couple of weeks. I too have big concerns about having children. I am currently about a week out from my last remicade(which isn't really working too good any more.. only lasted 2 wks last time) and on entocort(which i can't seem to sleep more then 3 or 4 hours on) as our wedding gets so much closer i am so concerned i will be flaring again/fistula will be back by then. doc and i have been trying to tinker with things since jan. to try to get things back under control but we simply ran out of time and what will be, will be. these last 6 months though i really have thought about how hard it would be to have kids feeling like this. i have had a couple of good weeks in between the long 6 wks. i know we will have the extra support around us, her parents, my mom... but how can that make up for the things a father should do. i don't think i could take the responsibility so lightly without feeling horrible about it. we are still going to have kids but it does leave me feeling concerned as well.
 
My heart goes out to you both about your concerns...........please don't worry you both speak so eloquently about your fears, I believe that when the time comes you will both do your very best for your children and will be positive fathers, you have the love to give and that is what's important, sure there may be times when you can't do something but all parents go through that too, have faith in what you both can give to your children, God bless you both and hugs too. :ghug::ghug:
 
I am right there with all of you. I have only been diagnosed with Crohns for 2 years and so far the longest I have been in remission for about 3 months. My GI doc. doesnt want to start with the pain killers yet but I am sure I will have to start with them sooner or later. The past few weeks have been hell with pain. I am taking it one day at a time at the moment. Also as far your kids I have 3 of them and they get angry at times but they understand the "bad days". But kids are resilient to everything. Hand in there. It will work out.
 
I can tell you as a parent of two boys, that how you treat your children will be so much more important than what you can physically do with them. My children were ten and nine when I first had to stop working for my back. I couldn't do housework and sometimes had to use a wheelchair. I thought they would be embarrassed about me when I went to their school functions, but they were glad I was there and not worried about the chair at all. Before and especially after I had surgery, they were very supportive and helpful, picking up housework and wanting to help me. Children understand your limitations and if you are a loving, supportive, and emotionally and socially interactive parent they will deal with your inability to do physical things sometimes.
Remember that stress is very harmful to your body and worrying about things makes body stress worse. Just know you will be doing your very best to be a good parent and let the rest of the world worry about itself!
 
I don't know if anyone here can answer this question but I thought it was a good one that I heard someone at my doctor’s office ask and this goes for me too. "Why am I the only one in my family to get Crohn's. As far back as my parents and grandparents can remember no one has had any kind of IBD. Oh yea one more thing, I have been given the go ahead to take D3 and B12. I have been on it for two days and I'm keeping my fingers crossed that it helps give me my energy and drive back. God bless you all for all that you are going through.

Mike
 
Hi mike, I feel I'm in the same boat. I am the first to be diagnosed with Crohns. My only rationale is that

1) many of my past relatives may have had some form of IBD, but just went un -diagnosed or recognized
.
2)also,, Crohns , having an inheriditary link can lay dormant for numerous generations, I am told.

3)lastly , I my opinion , I believe my life style,,may have led to UC, which in turn led to Crohns symptoms, which were confirmed as Crohns a few years back. Just my opinion,, which I could be way off base,but as I often ponder "why me" ,these become my thoughts. But those kinds of thoughts quickly turn to "let's make the best and move forward". Much more productive way to live our lives and cope.
Take
Twbuto
 
Interestingly enough, there are no cases of IBD in my family, yet myself and all three of my sisters all have some form of GI issue. So it was lurking there somewhere and just came out in us, I guess. Seems unfair! Plus there are a lot of theories that the current diet in developed countries has led to an increase in cases of GI conditions.
 
I am in the same boat as you all. As far as I know there is no one in my family that has Crohn's or Ulcerative Colitis. Although, I have an Aunt who has IBS really bad. But they keep telling me that she doesn't have Crohn's or UC. So I am not sure where the blood line for it runs. However, I was told that if you have a family history of any Auto immune diseases or deficiencies like Diabetes for example it can make you predisposed for any other one. I tend to lean towards that analogy since I personally have Diabetes, Multiple Scerlosis and Crohn's. My mother's side of the family all have or had diabetes. All my siblings have Diabetes and I have a brother with MS too
 
However, I was told that if you have a family history of any Auto immune diseases or deficiencies like Diabetes for example it can make you predisposed for any other one. I tend to lean towards that analogy since I personally have Diabetes, Multiple Scerlosis and Crohn's. My mother's side of the family all have or had diabetes. All my siblings have Diabetes and I have a brother with MS too
I agree with this idea, it makes sense to me that if you already have an auto-immune disease then the risk of subsequent issues has to increased.
 
That makes very good sense. My father had Diabetes but not the kind where he had to take insulin. The bad thing is I passed it on to my son and he is having a fit with it. Thank you all for your answers they really help me understand what might have happened. I thought it might have been because of something I did. I have a hobby I like to do and it's restoring cars and the biggest part in painting them. I thought it might have had something to do with the Auto paint.
Soccermom, I read an article yesterday where they are making great advances in MS. In the latest trails they take your own white blood cells and reprogram them so that they won't attack the nerves. The hope for this is that it will only take two treatments and that will retrain your white blood cells not to attack anymore. Sounds very promising.
 

723crossroads

Banned
Location
USA
Railbender, that sounds promising for crohn's and any immune disease too. I think we live in amazing times and soon we will have the ability to live for hundreds of years if we inject stemcells that are healthy into our areas of weakness. But as for me, I don't want to live that long!:eek:
 
Railbender....I'm sorry your son has diabetes, what age was he diagnosed? Please don't fret that it was something you did to him, I know as parents we do feel responsible for our childrens ailments, my eldest has a chronic skin condition which just does not want to go away, she has such a battle with it :(. Wouldn't it be m=nice if we could had magic wands that made them all better :). :ghug:
 
I have been taking the D3 and B12 sublingual. I must admit my hips don't hurt anymore and I have got a renewed interest in project in my garage. The only think that I'm worried about is my thyroid. I had a Doc in the box tell me that it was quite large and I need to get it checked so that's what I'm going to do. But my God I feel so much better. Thank you all for the Grand advise that you have given me. I know allot of you have some serious flares and I will pray for you all. Still on Cimzia and still working well. Again thank you for the advise that is really changing my habits at home for the better.
 

723crossroads

Banned
Location
USA
Hi my name is Patrick and I live in northern virginia with my wonderful wife who I've been married to for 3 years. I am 35 years old.

I was diagnosed with Crohn's in 1998 and its been a battle ever since. Despite the pain, embarrassment, energy, money and hospital visits and surgeries I was able to graduate from Virginia Tech with a degree in History and find the love of my life 5 years ago. However, holding down a job for more than 2 years has been quite a challenge. I'm currently on Cobra and unemployment. Luckily, I have a very supportive family.

The past few months have been very hard. I have switched from Humira to Methotrexate and I am hoping and praying this will work. Not only for myself but for those around me that are very close to me, beginning with my wife of course. I didn't realize how great a toll the disease can take on your loved ones as well until I got married. Getting back to remission and returning to full time work would definitely take a lot of stress off a lot of my close relatives. I am sure my wife, parents, and in-laws are worried that when the kids come, I will be out of commission on those "bad Crohns days", hence unable to handle the responsibilities of a father until I get back on my feet. Anyone have fear or a reality of this? I know I will be a great father, in a way, having this disease had made me a lot more empathetic, generous, and wise. I look at the world where my priorities are, which are family, faith, taking care of my health, and enjoying life. I don't have so much expectation on myself to get that job or that promotion, because that just stresses me out and I get a flare up.

Also, I have had to take a lot of medicine which of course is hard on the liver. The pain has been bad that sometimes I have to take hydrocodone (vicodin), for my abdominal and joint pain. If its not that bad but I still cannot get out of the house I have Utram (tramadol). I think my family worries that these also will lead to addiciton or be really hard on the liver. But I feel like I would rather take them and experience life, rather than not taking the "narcotic" pain killers and being in bed rolling around in pain all day. So I wish people would understand why I need to take it sometimes. I think they are worried because of all the negative press opiates/opiods have recieved in the past few years.

So I'm very glad to be on my first forum for crohn's (it only took me 15 years lol), and if anyone has comments or advice on being able to be a good parents, and taking medication for pain please help. Thank you and I hope you all are keeping hope alive even in your painful days. -Patrick
I think opiates alone are safer on your liver than tylenol. I take oxycodone 2 times a day for pain and my liver enzymes are fine. I also take 6 other meds for differerent reasons(health issues) and I am 56. So, don't worry about your liver unless you bloodwork comes back with really high liver enzymes. Another thing you can do to aid you liver is to take Milk Thistle. It is proven to protect your liver from these harsh chemicals. It is a plant. You can buy caplsules at almost all pharmacies and Walmart. They are cheap and really work.I saw on the local news a trial test of several children who had to undergo chemo for cancer. They gave half the Milk Thistle the whole time and the other half a placebo. The half that took it had no liver damage and the half that took the placebo did. So, That shows it really does help.:)
 
Hey Patrick,

I too am a father of a 1 year old. Unfortunately I cannot afford to have the "bad Crohn's days". I was officially diagnosed in October 2012, but have been battling it since 2007. I consider it a battle because after one surgery (hemorrhoidectomy) I had a brief remission. Then, the fissures happened so I had a sphincterotomy which led to another brief remission. In February 2009 I started having severe joint pain in my left knee (patella femoral pain syndrome). Then the fistula and abdominal pain... and constipated diarrhea began to occur in Iraq. I started receiving treatment with mesalamine after a Prometheus blood test to reduce the inflammation until I had my colonoscopy. Then I started Entocort EC until my small bowel study. Now I am on Remicade. So far the pains I felt yesterday (1st day on it) have decreased and I woke up with energy.
 

723crossroads

Banned
Location
USA
Hey Patrick,

I too am a father of a 1 year old. Unfortunately I cannot afford to have the "bad Crohn's days". I was officially diagnosed in October 2012, but have been battling it since 2007. I consider it a battle because after one surgery (hemorrhoidectomy) I had a brief remission. Then, the fissures happened so I had a sphincterotomy which led to another brief remission. In February 2009 I started having severe joint pain in my left knee (patella femoral pain syndrome). Then the fistula and abdominal pain... and constipated diarrhea began to occur in Iraq. I started receiving treatment with mesalamine after a Prometheus blood test to reduce the inflammation until I had my colonoscopy. Then I started Entocort EC until my small bowel study. Now I am on Remicade. So far the pains I felt yesterday (1st day on it) have decreased and I woke up with energy.
Danieldresen, I hope it keeps working so well for you. Were you referring to the remicade working or the entocort? I wasn't clear on that. The best to you and thankyou for your service to us!!!:)
 
Hi Patrick, When I was 25 I was diagnosed with Crohn's. The first thing I asked was it going to kill me and the doctor said no. I had no idea what the future was going to hold for me in the way of pain, medication, doctor visits and surgery. You're very correct it is hard on your family and like you I had two very young children and a full time job that I had to travel every week with. At this time I had a great carrier started with the railroad and I was determined that it wasn't going to get in the way of my family or my job. Like a fool I went to work every week pain and all. For some reason back then they would not give you pain meds not to mention how limited the treatments were back then. Over the years I got enough time under my belt to get a job at home and that made life with Crohn's a little better. In 1994 I had a colon resection and that put it in remission for around 7 years. Yea I said 7 years of pure bliss! But as my luck would have it, it returned. by this time Remicade came along and it worked for me about 3 years or better and then I built up antibodies against it and started to have breathing problems that became worst with every infusion. The good news is after that I was put on Cimzia and it has been working for about 5 years now without a single flare.
With all that said I guess I'm trying to tell you that if you are determined you can do all the things that a fathers should do, keep a job and live as normal as humanly possible and know that in later life it seems to get better. My prayers for you are that you find the right biologic that works for you and you find the job of your dreams. You sound like a husband and father that cares so I know that part will work out just fine. I am now 58 years old and looking forward to retirement in 24 months. I will check back here often and if I can say anything to help please let me know.

Mike B
 
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