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03-13-2012, 01:28 AM   #1
priscy777
 
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Just happy to be here, too

I woke up around 12 midnight hearing the watery sounds my husband's tummy makes. I have been listening to those sounds for the last 8 1/2 months. There were moments I thought I was loosing him. He was diagnosed when he was 12, then Chron's went into remission. I did not know anything about this illness until I met him. But I did not know how serious it is until his flare ups started last July 2011. We do not have insurance, he was and has been unemployed since January 2011. So my attempt to convince him to go to a doctor or a hospital was almost impossible, because he did not want to go. Me personally have never been in a hospital, and I try to keep my own health state based on a vegan diet. So far until here I havenīt had any health problem. But seeing my husband in his condition something kept telling me that there was something else going on. My dear man still said he knew what he had already and those flare ups would disappear sometimes... I wondered, when is going to be that sometimes? So the word hospital was displaced and not even mentioned ever more. Until last February 28, around 2:00 he asked me to call the ambulance. Part of me was grateful he finally gave up and decided to look for medical assistance but also I was worried how serious would his problem be... He had the NG tube for two days, two and 1/4 of canisters filled up with all the bad materia, XR's showed he had a bowel obstruction in his small intestine (not where the initial problem was diagnosed when he was child). My husband was weighing 91 lbs, dehydrated and emaciated. So far doctors did not considered surgery necessary but told him to be careful and obviously, this time not to ignore at least their assistance even to check how the illness goes. He has next appointment on March 22. It has been only 2 weeks since he has been out of the hospital, has gained 6 pounds so far, his feet were very swollen but now he is able to walk, though he feels still weak and sometimes like he loses his balance. He is also eating practically continually. Last Friday he had 4 plates of spaghetti, later he could not help to buy some chocolate when we went to the theater... oh Good Lord! I did not say anything but just that night he woke me up saying he felt again some pain, I used the same question doctors used: how would you rate your pain? When he told me from 6-7 I got really worried, inside me I thought, oh here we might go again to ER! But thanks goodness it went down and after he went to the bathroom he was able to sleep well.
Like I said before, I am new in this experience, I wish I could take his pain away, and heal him!!! Now maybe I am still with the paranoia of those watery sounds that I think still has inflammation, or maybe he should be careful in the amount of food he has through the day. I understand he is now so hungry and wants to eat a lot. Yet I do not want to bother him saying what to or not to eat... he is having a low fiber diet, I found that yogurt and kefir with probiotics can help so I got for him at Whole Foods. He says that they do not affect him. I was mentioning in other posts how I have become to help my husband, but I wish to know more, maybe I ask too much when I said I want healing powers!!! I hold his hand as much as I can, he likes me rub his head and back, he feels it soothing. Sometimes I just sit by his side and listen. I feel that for him and me help to talk about future, about the places we want to go. I do not deny I feel very frustrated and impatient sometimes, in those moments I take a walk, alone. It is good to scream in the car, too! that helps me personally so getting at home I will not be taking stress for him. But after all, I am very very thankful I am by his side, I wish I could do more though. Sometimes I wonder and try to understand the ways the Lord opened for me to get here and met him and be his wife. I think it was in His plan we'll be together. We try to keep the good humor. Today I was at work and he sent me a txt: I am your cheerleader! I love you! ... that put on me a big smile, I replied: what about a green mini skirt and a pony tail too? Saint Patrick Day is coming so I guess I will bring him for real a green mini skirt...
03-13-2012, 02:27 AM   #2
kiny
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I think it's really good that you go to ER and to the hospital with him. From personal experience ER can be a really lonely and cold place, and if there's no one around it's really easy to start losing hope. I have a lot of respect for people who want to help carry part of our burden.
03-13-2012, 07:22 AM   #3
Momof2EW
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Your doing such an amazing thing! I'm sure he is beyond blessed to have such a great wife. Sometimes after have been diagnosed for 2years I wish my husband acted like he cared more. I guess he thinks I pretty much have it all down by now. Lol.

Keep up the good work and I pray for him to get getting better and better!
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Elise
Getting through this, one day at a time!
Diagnosed With Crohn's in September 2010
Medications:
Remicade
Lexapro 30mg daily
Klonopin 1mg 2xday
Trazodone 150mg nightly
Lomotil(only as needed)

Tried & Retired:
Humira,Buspar,Effexor XR,Ambien,Prednisone(devil)

"Sometimes I think my life would make a great TV movie. It even has the part where they say,
"Stand by. We are experiencing temporary difficulties."
03-13-2012, 08:33 PM   #4
priscy777
 
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I think it's really good that you go to ER and to the hospital with him. From personal experience ER can be a really lonely and cold place, and if there's no one around it's really easy to start losing hope. I have a lot of respect for people who want to help carry part of our burden.
Thanks a lot for your kin words! I did not want to let him alone. I was supposed to work next day, my boss had expected me to go sometimes in the afternoon, I simply said i wasn't going until I knew what doctors considered necessary to do to him. He spent from 3AM until 3 PM at ER, one thing I am very grateful that the medical staff, including janitors were friendly and very professional. i think we got him to the right place and right on time.
03-13-2012, 08:47 PM   #5
priscy777
 
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Your doing such an amazing thing! I'm sure he is beyond blessed to have such a great wife. Sometimes after have been diagnosed for 2years I wish my husband acted like he cared more. I guess he thinks I pretty much have it all down by now. Lol.

Keep up the good work and I pray for him to get getting better and better!
Thanks so much Elise. Short Story, the day I met him, I was with a group of friends, and among them other guys I did not know them. I remember one of them started making jokes of Ryan because he is skinny and very white. I thought the comment of the other guy was very rude. That is when I talked to him and got into conversation about hey so what do you do? School? Work? Two months later we were dating. But going back to that incident, he replied very calm to that rude guy: You are lucky you don't have Chron's. That is when I asked him, sorry to bother you with my ignorance, but it is first time I hear of this disease...
One thing I keep remembering he told me that day: This disease has its own mind, there are times I am great and then I am feeling horrible.
I try to remember that when it comes the worse, it has its own mind but hopefully we are going to beat it down!
I will pray for you too Elise and for your husband. My best wishes always.
03-13-2012, 08:59 PM   #6
Momof2EW
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Thanks so much Elise. Short Story, the day I met him, I was with a group of friends, and among them other guys I did not know them. I remember one of them started making jokes of Ryan because he is skinny and very white. I thought the comment of the other guy was very rude. That is when I talked to him and got into conversation about hey so what do you do? School? Work? Two months later we were dating. But going back to that incident, he replied very calm to that rude guy: You are lucky you don't have Chron's. That is when I asked him, sorry to bother you with my ignorance, but it is first time I hear of this disease...
One thing I keep remembering he told me that day: This disease has its own mind, there are times I am great and then I am feeling horrible.
I try to remember that when it comes the worse, it has its own mind but hopefully we are going to beat it down!
I will pray for you too Elise and for your husband. My best wishes always.
Thank you so much as well. And your husband is completely right about it having its own mind. Its a crazy disease... I am currently going through my first sickness since my last big pneumonia breakout last spring. My GI has me back on steroids and antibiotics as of today for a viral infection Ive caught. Stinks but I hope this medicine kicks it out and away! I'm sending you a friend request, hope you don't mind
03-14-2012, 09:14 PM   #7
priscy777
 
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Thank you so much as well. And your husband is completely right about it having its own mind. Its a crazy disease... I am currently going through my first sickness since my last big pneumonia breakout last spring. My GI has me back on steroids and antibiotics as of today for a viral infection Ive caught. Stinks but I hope this medicine kicks it out and away! I'm sending you a friend request, hope you don't mind
Not at all! I added you already! Sending to you lots of positive thoughts!
03-14-2012, 10:11 PM   #8
Momof2EW
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Thanks yahhhh so much!! Hugs!
06-23-2012, 07:37 PM   #9
priscy777
 
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Thanks yahhhh so much!! Hugs!
Hi Elise, I haven't been here for a while... how are you doing?
I have been thinking to come visit this page but so many things have been happening for the last 3 months. What a ride this life!
My husband is still there, recovering little by little, but not enough feeling great to start working even a part time job. I lost my job since last April, and I have been applying daily with just few calls coming back. I have been even thinking to join AmeriCorps in order to get something financial to feed ourselves. In a desperate situation I don't know what to do. But I try to see that I am healthy enough and I pray that I can find a good job to help my household... We had a case worker from the hospital helping my husband to apply for benefits for him, but it has been rejected. According to them, he is healthy enough to work. I think how can that be possible when he needed blood transfusion, his weigh goes up and down, there are days he is so weak? He seems gaining weight but it is the effect of the medicine? I have cried, laugh, sadly... but I donīt want to hold on anger. Right now Ryan needs someone who is thinking positive. That must be me. I have sometimes just thought of leaving this country and taking him with me. I have been lived before in other countries where at least, I know the people, have lots of friends, and I have more opportunities for career success. But he doesn't want to leave, I know he loves his country, and I won't be pressuring him to do something against his will. I know there more people going through worse cases. Besides, I want to remember the things that bring happiness to both of us: Taking my husband to the near park and just sitting to watch the sunset. Talking about our future and grasp on positive resolutions. Being grateful that we still have each other. And repeat to him when he feels so frustrated that we are going to get through this...
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