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ConfusedOne
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Hello! I was diagnosed with Crohn’s on October of 2007 after a 13 year battle with several diagnoses and hundreds of medicines. Most of my health issues can be attributed to the lack of the correct diagnosis and they include chronic anemia, fainting spells, arthritis and chronic fatigue among other things. For 13 years I waited for doctors to tell me what was wrong with me and give me the “magic pill” that was going to put an end to my suffering then reality kicked in, I have Crohn’s. When I was told the diagnosis I didn’t believe it was the right one (I had several others, including mental ones because all my doctors refused to look at my small intestine, and said it was all in my head), until I something very unusual happened, all my symptoms, including the ones I never told the doctors about, fit with the disease. It was true, it was Crohn’s. Now I have to face the fact that there is no “magic pill” and I have to deal with this thing for the rest of my life. My family is divided into two groups, the ones that care, and the ones that don’t, fortunately for me, the ones that don’t care live far away, and I only have to talk to them occasionally on the phone. My husband, who really cares, is really supportive, but I don’t think he understand me completely, especially the psychological aspect of the disease, and sometimes, unintentionally, makes me feel weak minded and worthless. There are some days when I feel that the best thing I can do for the world is I disappear from the face of the earth. Up until now the thought of leaving my husband wondering if he did everything he could to save me, and my almost 6 year old boy kept me going, but the idea of having that other possibility gave me some control of my life….I found out in December that I’m pregnant, and I’m happy with the idea, but I feel really confused because I cannot even consider my own death anymore, it would be taking two lives instead of one, so I feel sort of trapped. I’m currently taking Pentasa, which is supposed to be kind of gentle on the baby. The GI said he prefers to keep the treatment as “off hands” as possible until the baby I born, which is good in a way. This is a very painful and hard path to walk, and frankly, I’m running out of strength. I’m sick and tired of being sick, of being looked at by my family as the “sick one,” of being laughed at by my sisters for having neverending pain. I’m scared of the birth of my child (in August) because according to my doctor I should be expecting a bad flare up (though I’m not completely done with this one), and I’m not sure I can handle that. Sorry for the complaints, but I have nowhere else to do that. I feel that my husband loves me, but doesn’t understand me, and as for the rest of my family…well, they just don’t care, so I cannot talk to them. Thanks for reading! |
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pkhogue,rn
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Hi, sorry that you are going through such a hard time. My son was diagnosed recently and frankly, I wish it would have been me. There are generally 3 theorys behind what Crohn's is. Please see my website if you get the chance. It is alot of reading. In the meantime, hang in there. There isn't anything more precious than life. http://crohnsgroup.weebly.com, good luck! |
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jay1962
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I had simular thoughts when I was younger with this crap, but after I had my 2 kids all things changed. I am not sick in their eyes, I am their father, I may not be able to play all the time, but that does not matter. All that matters to them is that they are loved. I can not imagine going through life now without them, but even harder is to think of them going on without me just because I gave up. |
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pkhogue,rn
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One thing to remember about 'depression' or the 'blues' is that some situation may set it off or nothing at all. It is just a feeling that comes over you. Your children can be an inspiration to you. Even when my son felt horrible and I felt even worse as far as his prognosis, I had to keep my chin up. Even though I don't share your diagnosis, I really do because of my son. One thing that I decided when it all happened was that I was going to educate myself and get him the help that he needed. With this disease you have to be proactive, because if you don't, it could mean the loss of your colon. Whatever it is you have to do, educate yourself and follow your heart. |
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ConfusedOne
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I’m trying my hardest not to give up, but it breaks my heart to hear my son invite me to play with him and having to tell him that I can’t. He understands, but I feel really bad because his memories of his childhood are going to be with a sick mother…but we do other things like board games, and he really likes that too. I’m sorry about my depressed introductions, but I feel like my life is a roller coaster, and some days are really bad for me. What has me confused is the pregnancy and the thought of getting worse after having the baby. Has anyone been pregnant while having a flare up? How do you differentiate the pregnancy symptoms with the ones from Crohn’s? Thank you very much for your interest and support. By the way pkhogue, how old was your son when he was diagnosed? |
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pkhogue,rn
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He is 11years old. Basically, I knew something was up, but did not know what. For 6weeks he had diarrhea and a low grade fever. The doctors kept saying it was a virus and that he would get over it. He also had 0 energy. Finally he wound up with an abscess and had to have surgery. His Crohn's,unfortunately for him is all over. Ulcers from the esophagus to the rectum. Listen, I would probably get a second physician's opinion on that. I don't think that there is anyway of knowing what your body will do after the pregnancy. And don't worry what your little boy will think. I know a person who can't walk and barely can use his upper limbs and he is an excellent father. It's not what you can physically do for your kids, it's what's in your heart. What are your main symptoms now? |
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ConfusedOne
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My Crohn's is affecting my small intestine, and despite the fact that they found several ulcers, is not a very severe case. I'm always tired; I found out that I get low grade fevers at night; I have arthritis in my lower back, and the pain is unbearable sometimes (worse now putting on the weight of the pregnancy belly); I suffer from severe headaches and constant constipation due to the high iron diet to control the anemia; also, my abdominal pain is really bad, I’ve ended up in the ER several times, of course they just send me home after giving me a “trip” of morphine.” I get really bad abdominal cramps that bring me down to my knees screaming from the pain, and nausea and vomiting, especially after eating. I used to have several fainting episodes per week (because of the anemia), but it has been a while since I had the last one. My biggest problem is that I’m used to running around, I used to go to school (taking 19 and even 21 credit hour semesters), take care of my little boy, and have a social life on top of that, and now I feel like I’m living a vegetative life and it kills me! |
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