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Crohn's Disease Forum » Your Story » Newly Diagnosed and not coping


09-14-2017, 07:55 AM   #1
Adana86
 
Join Date: Sep 2017
Location: Edinburgh, United Kingdom
Newly Diagnosed and not coping

My name is Clare, I'm 31cand have recently been diagnosed with Crohn's Disease. I'm finding it very hard to cope with the new pains and symptoms of the disease. Help!
09-14-2017, 09:25 AM   #2
undone
 
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Location: St. Paul, Minnesota
Hi, Clare. I think its great that you're reaching out here on the forum. There are many here who can offer support and suggestions to help you better cope with the disease.

I'm a 40 year Crohn's vet and have also had my share of pains and symptoms over the years. One of the things that has helped immensely for me is to become self aware, specifically how my body reacts to certain stimuli like foods, stress, drugs, etc. It takes time to understand, but the effort is worth it. It is a process of trial and error.

That said, I would encourage you to talk with your doctor about your feelings and fears, and to start tracking the foods you eat, how much you eat, and the resulting outcome. You may end up struggling with Crohn's the remainder of your life, but you may also minimize it's symptoms this way.

Best wishes to you! Keep us posted!
09-14-2017, 05:15 PM   #3
ronroush7
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Welcome. I agree.
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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.
09-15-2017, 10:29 AM   #4
swimbikerun
 
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Hi Clare - like you I have been recently diagnosed with crohn's. I also am having a hard time dealing with it, physically and psychologically. I have seen someone compare the process of learning to deal with crohn's to the 5 (or 7) stages of grief of losing a loved one: denial, guilt, anger, bargaining, depression, upward turn, reconstruction, acceptance. While I do not really have answers for you as to how to get through to the end of this process, if that is even possible, I can share my experience thus far in the hope that you will at least not feel alone.

I have cycled back and forth among the stages, from ongoing denial, or at least questioning if the doctors have it right as my crohn's is so atypical, to “acceptance” of a treatment plan at least driven almost exclusively by pain, back to guilt (as in what in the world did I do to cause this???), to anger, back to depression, etc. You get the picture. This process is not linear in the least.

It is also hard to be hopeful or start to reconstruct your life on days that you are in a black hole of pain. And these days, at least for me, are not predictable. They spring up for no apparent reason which can make me angry because I am trying, really trying to manage and do the right things (eat healthy, get sleep, drink plenty of water, exercise, etc.). Many people suggest keeping a log of your food, activities, etc. and using this to try to map out what helps you feel better and what sets off your symptoms. This is not a bad idea but it also has the potential to lead me to a point where I am forever trying to structure my every move to prevent pain which feels like a moving target, like a kids game where the head child is always changing the rules so they can “win.”

So all this said, things that have helped me cope: 1) watching, reading stories of people overcoming, whether that is crohn’s or any other debilitating situation. They give me hope and the thought that maybe, just maybe, there is a purpose to my disease. 2) attending support groups for Crohn’s & Colitis – here in the states the Crohn’s and Colitis Foundation organizes support groups that are led by people who are living with Crohn’s. The groups can be depressing and helpful at the same time. Helpful in that you can ask any question and get an honest answer in an environment that you don’t have to worry about how you are being judged. Depressing in that hearing some people’s stories is scary. 3) diet – regardless of what many of the doctors say, regardless of the fact that there appears to be no real clinical evidence, diet does matter. There are enough people out there suffering with crohn’s using diet to help manage their symptoms that we don’t need a scientist to validate. We know. Of course, what diet is the big question. And it is very personal. For some people raw veggies send them into pain. For others, like me, raw veggies are just fine. Figuring out the diet puzzle is time consuming and can be depressing when you find out that your favorite food needs to come out of your diet. So much of our social lives seem to be geared around eating, going out for drinks, etc. that this can put a dent into your social life, or at least feel like it. Friends, good friends who lift you up will try to understand and help by making sure they have foods you can eat when they invite you over. 4) exercise – this has been a hard one for me. I participated in triathlons prior to crohn’s. As my symptoms increased my activities decreased because they exacerbated the pain. But I do believe that movement helps. It is finding the right movement, intensity and frequency. I am not a patient person so I do not get this right quite frequently. I start feeling better and go out and try to do too much. And then I feel horrible. But I keep going back to exercise and movement because on good days movement makes me feel alive and free and good. This can be walking outside and enjoying the feel of the sunshine on my face. I try to embrace it and stay in the moment. I will not pretend to always be successful in this. 5) faith – oh so problematic for me but I’m trying. I believe in a God who is good, who wants only good for his creation. I also believe in an evil power who wants only destruction. This disease is destructive so I suppose I am on the battle field of good versus evil. I did not choose this role and really do not want it. I would throw it off in a heartbeat if I could. But I can’t so I try to spend time in activities that will build up my faith – church, study, meditation and prayer. 6) helping others – I find I can push down pain when I am doing something for others. Perhaps because it gives me back a sense that my life is productive even while it is most definitely not going the way I had planned. And I need that. I need to feel that my life means something even with all this stuff that I do not understand and that quite frankly, none of the doctors understand either. 7)at least one, caring non-critical friend – sometimes I just need someone to listen or read my text and give me love. Friends cannot fix anything. But they can say “I care”. When I went in for my first infusion I was scared. I texted my girlfriend who does not have crohn’s and told her I was nervous. She texted me back words of comfort. That’s all. It helped. 8) treatment – I would like to think I could kick crohn’s on my own, naturally. While there are different thoughts on this most doctors and scientists would probably argue it is not possible. Realistically I also know that while I can be disciplined it is only to a point. Diet has helped me manage pain but not completely get rid of it. I’m not sure I can manage what it would take to “heal” myself through diet alone. So treatment, however flawed it may be, is important for me. It is helping even though I am not in remission. 9) pain management – tough one. I am on nothing for pain even though it is my constant companion. I take children’s Tylenol every once in a while but that is it. I use hot compresses at night on my ribs/back/gut to help things relax. I stretch almost every morning, using gentle yoga moves. I will put lavender drops on an eye mask to help me relax and sleep in the evenings. I swim which is supposed to be good for pain management. I’m still learning.

I hope this is helpful somehow. It’s long, that’s for sure. 😊

Last edited by swimbikerun; 09-15-2017 at 10:33 AM. Reason: highlighting
09-28-2017, 08:08 AM   #5
Adana86
 
Join Date: Sep 2017
Location: Edinburgh, United Kingdom
Thank you for your replies. I have actually found out that the medication I take to combat my Crohn's is making me nauseaus. I will hopefully find another medication to help me combat some of the symptoms. I'm glad to be part of this forum and find support so thank you for making me feel welcome and supported.
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