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04-04-2013, 10:45 PM   #61
SandyUte
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That is wonderful news! Hugs to you and yours! It is really nice to hear good things now and then too.
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04-05-2013, 07:23 AM   #62
Karen
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Wishing one and all a great FRIDAY and a wonderful weekend ahead. Whatever your plans be ... stay safe & come and visit us from time to time !!
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04-05-2013, 09:12 AM   #63
jwfoise
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Hi all!!!
this forum is going to be a sanity saver for me!!!
joking aside ive just got home from hubby being admitted to hospital with a bad flare up. hospital were fab so now we have to wait until morning to see whats going on. hated leaving him there but I know its the best place and he said himself I need my sleep which is true as im gonna be looking after him lots!!!

feeling a little lost tonight :-(
Wow, have I been there cottonbud (as I suspect lots of people here). That first night when you leave them in the hospital is the worst. Try to get some sleep, don't neglect yourself, reach out for support, and know hubby is in good hands.
04-06-2013, 02:51 AM   #64
Monika Anna
 
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Just wanted to say Hi to everyone and to keep hanging in there! My daughter and I have been at the hospital the last few days, but we are home again. It sucks living two hours away from the hospital, but at least it's not 12 hours like before Christmas that we had to drive.

It is hard leaving your partner to go home again, especially for our daughter, I thought I would be used to it by now but it still hits us every single time. I try to think positively and say to myself that it could be worse. I find it hard to enjoy myself a lot of the time as I find myself feeling guilty that I am having fun or doing things that my wife can't. I try to keep it together for our daughter but sometimes it is very difficult. I don't know how you guys feel but for me I can't shake that feeling a lot of the time.

Anyway, I just wanted to get that out. I hope everyone is having a great weekend, or as great as it can be, take care.
04-07-2013, 09:23 AM   #65
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After almost 2 weeks in the hospital, my hubby's finally coming home today!! It sounds like he's doing fantastic, in the least amount of pain he's been in for the past 2 years. Thanks be to God! I'm so happy right now, I thought we'd never see this day!!
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I don't have Crohn's, but I do suffer from it...

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04-07-2013, 03:51 PM   #66
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hi all!!!
been a busy weekend, hubby still in hospital and still in lots of pain but looking less tired then he did last week so i assume something is working. been visiting 3 times a day as im lucky that it is only a 15 minute drive and i dont have to rely on others to walk the dogs etc. hoping that 2mo brings some bright news as last thing friday they were trying to chase the CT scan pics that were done at a different hospital. hubby worried that this will result in surgery as we are going away in 3 weeks time. looking at his stool chart it isnt to positive...he started as a 7 and went u to a 4 over a few days but today he is a 6...all day, maybe its the meds or the low residue diet?
Rehopeh.......thats fab news...big hugs to you all. x
04-07-2013, 04:48 PM   #67
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sorry so long!Hi everyone. I feel blessed and lucky as so many of you have someone in the hospital right now, and I don't Doug and I had our 18 year anniversary yesterday, and it was nice to spend some time together in relatively good health. When Doug was finally diagnosed, he was in horrible shape and in need of urgent surgery. He had been misdiagnosed for several years with IBS, in spite of horrible pain, problems and even a palpable "mass" in his stomach (constricted intestines), losing weight and not being able to eat anything for a long time. The surgeon who finally did operate was amazed at Doug's pain tolerance and ability to live like he had for so long. He was very near to death, and I found out after the fact that he had wished for it. however, like I mentioned, he is in relatively good health now thanks to a couple of good GIs. There are a couple of reasons I bring this up. One is so you know that things can and do get better. The other is that Doug had read this thread and thinks as I do, that no one ought to feel guilty for going on with life as loved ones are in hospitals, etc. Doug says he longed for something besides dwelling on crohn's twenty four hours a day. Those afflicted with this horrible disease want to see some normalcy. I took Doug's mind off of crohn's by developing a seizure disorder. This was not the way to do it! We need to be there for each other, but continue to live as best life as we can. We need to lift each other up! That is what life is all about, in my opinion. If you believe in any kind of God, wouldn't He wasn't the best for you? If you are not sure, or even if you don't believe in a God, don't you want the best life possible? I know that is easier said than done, and sometimes there might be a little jealousy, but remember it is not that our loved ones wish us ill will, they are just mourning what they once had. They may think we don't understand at times, and we don't, we can't, unless we go through what they do. We can empathize, we can support, but maybe we will have to remind them that we are there for them. Don't stop visiting in the hospital, do what you can to cheer them up. you will find it goes both ways.
like I said, I feel blessed.
HUGS!
04-08-2013, 07:50 AM   #68
Karen
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My good friend Sandy !!! Wishing you all the best !!!
04-08-2013, 08:18 AM   #69
SandyUte
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Aww, shucks, Karen. Thank you.
04-08-2013, 11:44 AM   #70
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My husband and I went to a CCFA symposium on Saturday in Sacramento with speakers from UC Davis. Being new at this Crohns thing and only having info from the Internet so far, it was nice to hear information from top notch pros. The one thing that kept shining thru was the fact that everyone is different and no one thing works for everyone.
I am sooo glad this site is here! We learned here valuable info that is spot on! Thank you all!!! We knew that no one thing works for everyone, to keep a food journal, and that we are not alone.
We are currently puzzling the diet pieces together. Gluten free seems to be helpful (and we are used to doing that) but also discovered that gluten is tolerated! That was a bit freeing! But dairy is not tolerated at all. And he is trying a protein shake to put some pounds back on (which we are finding is very hard and slow). PlantFusion. He's tolerating it well. Now to see if it helps with the weight and weakness.
I feel blessed that we haven't done the hospitalization yet. My heart goes out to all of you dealing with that! Our trials seem petty in comparison. We do have an underlying fear of that in our future...
Fear of a major flare up makes some plans for travel seem impossible. Our daughter is going to study aboard (across the pond) this summer and we had planned to travel with her a bit before classes began. Now hubby is fearful of even getting on that plane. And I have a truck load of emotions as well (travel alone- guilt, push him to go- fear, stay home- frustration, disappointment, etc) We were fine with travel before because flares had been minor in comparison to this last one. Hubby's biggest fear is a major flare when he's not at home...I understand that completely. How do you handle this? Go, carefully? or find other adventures closer to home?
I know as we learn, it will get easier...but right now it's frustrating that Crohns seems to direct everything.
04-09-2013, 05:55 AM   #71
Karen
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Wishing one and all a great Tuesday & thank you for making this part of the forum turn out to be a big hit ... We have gotten 1,156 posts ... so thanks to each and all of you !!!
04-09-2013, 04:19 PM   #72
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Fear of a major flare up makes some plans for travel seem impossible. Our daughter is going to study aboard (across the pond) this summer and we had planned to travel with her a bit before classes began. Now hubby is fearful of even getting on that plane. And I have a truck load of emotions as well (travel alone- guilt, push him to go- fear, stay home- frustration, disappointment, etc) We were fine with travel before because flares had been minor in comparison to this last one. Hubby's biggest fear is a major flare when he's not at home...I understand that completely. How do you handle this? Go, carefully? or find other adventures closer to home?
One thing we always do for our travel plans is purchase trip insurance. Yes, it will cost you more, but it isn't outrageous (IIRC, it is typically less than $100 per person). That way, if worse comes to worse and you have to cancel at the last minute, at least you can get your money back. If you book through an agent or a travel website, you can purchase it through them, or do it independently on-line. Depending on the policy, you can also get it so that it covers medical flights back, if that becomes necessary.

I know that some people with medical problems like cruises, because there is often an on-board doctor, plenty of bathrooms, and if you are not feeling well, you can hang out in your stateroom.

My wife has an ostomy and sometimes will have problems or leaks, so always carries an emergency supply kit with her in her carry-on. We also keep one in each of our cars.
04-09-2013, 05:25 PM   #73
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Good Afternoon All!
Anyone else feel like they are making meals for their families af if your kitchen is a resteraunt? My hubby has been flaring and strongly adhering to the Low Residue Diet... I'm finding myself at a loss for options... According to the diet lean meats like chicken and fish are best, however, we've found chicken doesn't agree with him either.
So besides fish, I've made 3 meat loafs with ground beef and ground pork and that seems to be the ONLY meats that don't go right through him!
Anyone have any good menu ideas?
Signed, over meat loaf! Lol!
04-10-2013, 01:58 AM   #74
SandyUte
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Good Afternoon All!
Anyone else feel like they are making meals for their families af if your kitchen is a resteraunt? My hubby has been flaring and strongly adhering to the Low Residue Diet... I'm finding myself at a loss for options... According to the diet lean meats like chicken and fish are best, however, we've found chicken doesn't agree with him either.
So besides fish, I've made 3 meat loafs with ground beef and ground pork and that seems to be the ONLY meats that don't go right through him!
Anyone have any good menu ideas?
Signed, over meat loaf! Lol!
I sure wish I had a good answer to that! IBDer's diets are almost opposite of what everyone else should have. As for meat dishes,i don't know, except maybe smaller portions of lean meat included in something like pasta dish, maybe something like chicken fetucinni alfredo, or a tuna noodle casserole. I hope this helps.
Hugs!
04-10-2013, 09:08 AM   #75
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I sure wish I had a good answer to that! IBDer's diets are almost opposite of what everyone else should have. As for meat dishes,i don't know, except maybe smaller portions of lean meat included in something like pasta dish, maybe something like chicken fetucinni alfredo, or a tuna noodle casserole. I hope this helps.
Hugs!
Thanks! Last weekend, I made him a "special" grilled chicken pizza with a light white sauce and homemade crust and that totally did him in... Since this is his first major flare and up to this point he's been able to eat just about anything besides spicy foods this is a huge adjustment!! I'm starting to notice that even eggs are worsening the flare. As soon as we get his bathroom visits down to 5 times per day. We try something a bit different like the white pizza or plain egg omlet and he's in the bathroom ALL night.
Trying to find some good proteins that will sit well with him. Tuna fish is okay. Will try your tuna noodle casserole idea!!
Thanks again!
04-10-2013, 12:01 PM   #76
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Lisathegirls~I feel for you! I am feeding the man gluten free, dairy free, and low residue. Lunch is tuna with GF low fiber crackers, puréed canned pear in pear juice, and PlantFusion protein drink. He's sipping a Gatorade throughout the day. He's still in a flare, but it is improving ever so slightly. The weight gain seems to not be happening, but at least he stopped loosing!
Dinner will be GF pasta with baked chicken breasts.
I wish you the best in your search! And I'm sorry it's so puzzling...
04-11-2013, 11:50 PM   #77
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Hi everyone,
I am so glad I found this support group. I have been reading some of the posts and it seems there are many facets to this disease, It cetainly is very individualized. In saying that, we are all experiencing similar challenges. It is so nice to find a place of support from those going through the same thing as I am.

My husband was diagnosed with crohns in July 2010. He was experiencing severe crippling abdominal pain... after weeks of putting up with this pain, he finally went to the hospital emergency dept. His bowel had perforated and he required emergency surgery. Luckily, he didnt need a colostomy, they cut out the bad section of bowel and reattached. After a month's hospitalization, He was placed on Thioprine and seemed to be doing very well until December 2012. His Crohns has now come back with a vengeance. He has been experiencing weekly flare-ups, several bowel obstructions, violent vomitting. He was put in hospital last week with severe inflamation of the small bowel. He was placed on I.V. steroids and antibiotics. He was feeling ok for about 4 days, but then the pains returned.
We are both at our witts end with the constant illness, It is so hard to function day to day and trying to live life normally has become near impossible. we cant make plans, as he worries about his health, we have had to cancel our holidays as he doesnt want to be too far away from his doctors. It is so hard as a spouse to see your husband in constant pain and not be able to help them!!!
I am now trying to find edible low residual foods to feed him, so if anyone has any suggestions for meals I would be grateful.
04-12-2013, 02:24 AM   #78
SandyUte
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Welcome Tina! It is so hard to find the correct diet when, as you said, this horrible disease is so individualized. On top of that, each individual with the disease (at least my husband) seems to change so fast in his needs, not just day by day, but minute by minute. Of course, there are the generalities. I would try some very basics of low residue foods, and once you know what food, even just one food, he can tolerate, try adding things one at a time. As Karen always suggests, keep a good diary, including his reaction and any tolerance or intolerance to the food. After awhile, you will get a good idea of the sensitivities he has.
Another thing people on this forum do is purchase a juicer. you can get a lot of natural vitamins and minerals without the fiber that is hard to digest that way. I even like it for myself, but for me,I often stir some of the pulp back in.

I forgot to mention when talking about pasta above, a lot of crohn's people also have lactose intolerance. Creamy white sauces or Alfredo sauce might not work too well. (Luckily, Doug is ok with these.) If this is the case, try just plain ol' white flour noodles, with just a little butter or olive oil on them, and add things as tolerated. Doug also likes applesauce.

For meats, try using a crackpot or pressure canner/cooker, as it tends to make meats softer and more digestible.

I think I'm getting hungry!

( Also, remember they are going to eat what they want to anyway.
04-12-2013, 07:18 AM   #79
Karen
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SandyUte ... for all the wonderful tips that you have been sharing here in OUR GROUP and it has helped me out a lot to have a WONDERFUL FRIEND to HELP OUT so thanks again !!!
04-12-2013, 07:43 PM   #80
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Hi everyone. My husband has Crohn's. Severe mood swings pain and now insomnia and severe back pain. Any suggestions? Anyone else's have these symptoms? What do you recommend for back pain? Can barely stand or lay down
04-12-2013, 08:26 PM   #81
Karen
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Hi everyone. My husband has Crohn's. Severe mood swings pain and now insomnia and severe back pain. Any suggestions? Anyone else's have these symptoms? What do you recommend for back pain? Can barely stand or lay down
Welcome to the Group ... I am sure that someone will be there to help out as I found lots of support in the beginning with my hubby and I found myself sleeping a lot in the guest room ... just so that he could have the room to sleep and to also be close to the bathroom ... So, I will try and come up with some help ideas for you ... so once again WELCOME !!!
04-14-2013, 09:20 AM   #82
Tina H
 
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Thank you Sandy Ute for the advice, I will definately try one thing at a time to see what he tolerates, then slowly add things. Also, I will try the food diary.
He has finally had 3 "good" days in a row I'm keeping my fingers crossed it continues....... the pessimist in me doesnt want to get my hopes up though ! ( that sounds awful doesnt it !!! ) but lately, there has been more bad days than good. I'll have to learn to ENJOY the good days
04-14-2013, 10:42 AM   #83
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Welcome to the Group ... I am sure that someone will be there to help out as I found lots of support in the beginning with my hubby and I found myself sleeping a lot in the guest room ... just so that he could have the room to sleep and to also be close to the bathroom ... So, I will try and come up with some help ideas for you ... so once again WELCOME !!!
Thank you. I'm just wondering if a chiropractor would be of use.
04-14-2013, 07:43 PM   #84
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Sorry for my disappearance. I've not been well myself (partial seizures) and I've had a lot of family stress the past couple of days, mostly due to illnesses again. Dang blankety blank illnesses.

Hi, Lorhack! My hubby's sis lives in Henderson, Nevada, too. Welcome. I don't think the back problem is a typical part of crohn's, unless it is arthritis from the Crohn's. I think mood swings, however, can come from trying to deal with a serious illness, and can happen to the care takers too. At least that is my story and I am sticking to it. Was your spouse recently diagnosed? It evens out some after awhile, but coping skills do come in handy for all involved. Has his back been x-rayed? If not, you might want to talk to a doctor about that. I hope all gets better. Be strong, and if you don't feel strong, you will after awhile. Find joy in life in the little things, there really are a lot of things out there to find joy in.
Hugs to all!
04-14-2013, 08:32 PM   #85
Karen
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-----> 15

So I want to say thank you to each and everyone for making this support group such a HIT ... to each of you I send over lots of ....



so ... tell your friends and loved ones to come and join us !!!
04-15-2013, 02:50 AM   #86
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Hi everyone sorry ive been away! Nice to see some new people here. Just a small update. Will has his first hospital apointment on wednesday. Its taken far too long. He is tired all the time atm does anyone know how long it takes from getting a consultation to getting the colonoscapy? Im starting to feel very sorry for my man. he told me yesterday he can feel every inch of his bowl and digestive system.. :-(
04-15-2013, 04:41 AM   #87
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Hi everyone sorry ive been away! Nice to see some new people here. Just a small update. Will has his first hospital apointment on wednesday. Its taken far too long. He is tired all the time atm does anyone know how long it takes from getting a consultation to getting the colonoscapy? Im starting to feel very sorry for my man. he told me yesterday he can feel every inch of his bowl and digestive system.. :-(
04-15-2013, 01:51 PM   #88
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Hi, Mrs. Will! I'm not sure about the UK, but unfortunately the answer is that here in the US it varies greatly according to the GI's schedule, everything from the next day (very rare) until a month or two from the consultation. It also varies somewhat according to the patient's needs. I wish I had a better answer for you.
04-15-2013, 09:33 PM   #89
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I'm seeking support and information on behalf of my Hubby (aka "Half-gut", self - named ) He was dx'd at age 17; now is 38. Has had total of 4 small bowel resections and likely headed for a 5th in next couple to few weeks. He has been on all of the typical Crohn's meds over the years, except hasn't yet tried Tysabri; GI also mentioned Stelara, but not yet approved by FDA so our insurance likely won't cover. Had been doing fairly well for last 6 mo's, and was on Imuran and Humira (1x/wk). Now is in a bad flare; unrelenting pain, frequent vomiting and extreme fatigue. Last week's colonoscopy does not look good and we are anticipating a surgical consultation any day now. Overall his Crohn's has been very problematic and difficult to manage. Does anyone have any experience with Tysabri? It looks like they are considering it as an option, possibly post-op...If the lab tests would indicate him to be a candidate. Also, any info on use of proteolytic enzymes?
04-16-2013, 05:19 AM   #90
Karen
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I want to be the first to WELCOME you to our little corner of the forum. I am sure that you will find plenty of support and I am sure too that you will find some of your answers that your looking for ... so have good time here !!!
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