New and need urgent help

[dazed]

new and need urgent help

My husband was just diagnosed on Thurs with Crohn's. Doc saw lots of ulcers in small intestine and took 2 biops. Waiting to hear on that. He was born with Hershsprungs Disease and had 8 inches of his large intestine removed as a baby and so has had Big D, cramps, bloating all his life so when in the last say 5 years when he had a couple episodes where things weren't moving (one time landed him in the hospital) or diarrhea seemed to be getting worse, we chalked it up to Hershsprungs. Looking back it was probably the start of Crohn's.

Here's where I need your help. The colonoscopy put him in to a tail spin. Was doing fine before that but we think having to take all the laxatives and then not eating or drinking after midnight made him dehydrated and then procedure itself. It's been a rough 4+ days. First he was in tons of pain, not releasing the gas, temp. rising, nothing moving. On Sat. he finally started to eat solid food and take prescribed Mesalamine (Pentasa) but he was getting the worse heartburn hes ever had. Mind you, he's been having heartburn almost everyday for a year+ now and always took a spoon full of baking soda with water and it went away. But this time nothing was keeping it at bay. Stuff still not moving other than late that night he had big D once and a little gas.

Yesterday he ate again (greens plus for breakfast, turkey on Ezekial bread for lunch, piece of chicken with brown rice for dinner) and was walking around some, seemed like maybe there was light at end of tunnel. Still dealing with bad heartburn. Saw that could be a side effect of Mesalamine so he stopped taking it last night and hasn't had heartburn since. Didn't go, just a little gas and still felt like stuff sitting there but overall seemed like it was getting better and planned on going to work today.

Alarm goes off and his neck and back are killing him and is asking for Tylanol. I'm thinking that's from being in bed so much the last 4 days or could it be a side effect of Crohns? He had some diarrhea again this morning. But still feels stuff sitting there. Says he's not going to make it to work today.

I'm freaking out. I'm worried things aren't getting better. I'm also worried about his job. He just got a promotion and new boss a couple months ago. After today he will only have 1 day left of time off. And he's the bread winner. So as a born worrier, I'm already thinking the worse. Like forclosure and a sick/dying husband. I don't know if he still can't go back Wed if he can go on short term disability or how that works. I don't want his new boss to think he won't be back or can't handle it. And I'm really worried about him. I don't know what to do. I'll call the doc as soon as they open but I'm afraid they just want to throw pills at him and we really wanted to try a strict diet and vitamines to see if that would help. Our diet has been horrible and we are determined to turn that around. If anyone has any comments or ideas, it would be greatly appreciated!!!

 

[Shane]

Hi Dazed,

I was diagnosed with Crohn's in March so don't have a vast experiance as yet. My personal experiance is that the disease is still uncontrolled and I haven't been able to work since shortly before diagnosis. Although there is hope in a treatment I'm on now called Infliximab / Remicaide.

The thing to remember is that everyone has a different experience of this disease and It's impossible to know how things will turn out. Your husband may well need medication of one form or another but he may find his work isn't affected too much.

The only advice I could give you is try not to let it get you down too much as your husband will pick up on it and that won't do him too many favours.

I've had a reasonably difficult time but, the only way i've got through it is to think positive and know that things could always be worse than they actually are.

I wish you both the best of luck with eveything.

Shane

 

[D Bergy]

If I was constipated and was flared at the same time, I would just take large doses of Fish Oil to loosen things up. It is an anti inflammatory and will lube up the intestinal tract at the same time. Drop it down to normal after things have straightened out.

I hope your physician has a better way to get a grip of his symptoms. Drugs may be needed, at least in the short term.

Good Luck

Dan Bergman

 

[Jvstin]

alright, in my experience, here's my far out suggestion.
there's a hospital right around the corner from our house, almost walking distance. I've been thru their E.R. several times, and only get pills thrown at me. nothing helps, they just said scans show a little flaring. one day I was at work and just couldn't take it anymore. so when I got off work I went to the hospital out by work. I was emitted almost immediately and got the correct care. doc said my stomach was about to rip pretty much.
got patched up and went on my way after a weeks stay or so.
ever since then, I spend near an hours drive to go there.
sometimes it's just the hospital. the doctors out there actually seem to care and are interested in healthcare.
so, my suggestion is to try another place if you feel that you may have something simular going on.

 

[Kev]

Hey dazed. Welcome to the forum. Sorry to hear about your husband health woes. I think one of the 1st things you should do is try to get a handle on all of the worrying... it certainly isn't helping you, and what happens if you worry yourself sick? Only compounds your troubles. Think if you tour around this site, you see that all of us here know what you're facing... we've faced it all before too. And we're still going, and most of us try to put our best foot forward, even if crohn's can be downright nasty at times. Anyway, I think it's a great idea to look into a 'restricted' diet. I've been on a restricted diet, most of us here are either on a doctor/dietician/self help diet OR have come up with our own thru a process of trial N error (or is that live and learn?). Anyway, a couple of the food items you mentioned your husband was eating are definite no no's in my book.
I'm not allowed brown or wild rice... and I have to avoid green or gassy vegies

Anyway, I won't snow you under with what I can/can't eat, as everyone is just a little different. But there are some general guidelines IBD diets out there to get you started, and if you keep a daily diary.. what goes in, what it causes.. it won't take you too long to figure out what hubby can or shouldn't eat, okay?

as for the job issue.. No advice to give there. I lost my career of 20 years due to crohns... but once I stablized, I found another... and life just goes on, okay?

 

[hanaa al baydany]

hi Dazed.welcome to our family world.i am sorry about your husband and sorry for your worried.

you have to take care of yourself inorder to take care of the whole family.Try some realaxing exercises.

you have to consultt a deitician to give you a guide to deal with cronh's in all stages.
good luck,and keep posting.I hope every thingwill turn to be ok.

 

[DanSJVDavis]

Yeah, definitely look up low fiber low residue diet. Sounds like he needs less irritating foods right now to rest his gut. If you can, get a liquid vitamin supplement if he's taking those centrum horse pills. I have problems with those from time to time and they say that those take a long time to digest and might get stuck in a stricture. Fish oil or flax oil are both good as they contain Omega-3, which is an anti-inflammatory, as mentioned earlier. The pentasa does tend to cause gas and heartburn as a side effect and even I have taken the old baking soda and water tonic (though that's bad for you in the long term). I take Prilosec OTC for my heartburn, or Prevacid when I can get it. Prilosec's off the shelf. Pricey, but keeps my heartburn from getting out of control.

Worry's part and parcel to life and particularly Crohn's, but you just do what you gotta do and keep going. Try not to worry and tell him to try not to worry as well. It's not good for either of you. If you feel you need to, look for a more proactive doctor. There are far stronger treatments out there than pentasa and another doctor might be more likely to give one of those a shot. However, make sure you know what the risks are from your doctor or pharmacist and always ask the doctor questions. And research anything you have questions about. Knowledge is power. I recommend www.ccfa.org as a place to start.

He may need a little time with any medication or treatment to get back on track, but many people still have their jobs and have Crohn's. He may need to check with HR about FMLA or may need to trust his boss will be a little lenient considering your husband never asked for a chronic illness. Crap just happens.

Hang in there. Things'll turn around.

 

[Kev]

Said I had no advice to offer on the job situation, and I guess that I really don't...

BUT!

Let me tell you what happened to me, and from that you can draw your own conclusions.. Started getting ill in Nov.. but sort off tossed it of as stomach flu. I'd deal with it, didn't miss work, and just kept plugging away.. by April, my flu was coming back every other week, and I still refused to really accept there was more to it than flu.. and I still went to work each day, tho some were bad.
Then, one April monday, my flu went crazy while at work, and I ended up in ER.
Ended up hospitalized, got mis-diagnosed a number of times, be sent to ER or hospital, get out, end up back in.. wound up on short term disability.. Finally, a doc said I needed a g/b op, and once I had that, everything would be normal. I had that, did my recovery... Was asked by my company's insurer if I'd be back to work soon, or if I was going to opt for long term disability. I wanted to get back to work, pressured my doc to let me.. he was reluctant, but he finally gave me the 'green light'... After all, I was 'cured', right (pre crohns/ibd diagnosis) So I went back to work early... one week short of qualifying for the L.T. disability. I was A-OK on Monday, slightly symptomatic on Tuesday, worse on Wednesday..
I SHOULD have faced the fact something was wrong.. I SHOULD have left work and gone to my doc or the hospital.. I didn't.. That Friday my company laid me off.. If I had looked after myself in the first place, IF I placed myself first.. IF, IF, IF... Welllll, I'd have been on the Long Term Disability, would have been paid up to the point where either I was 'REALLY' cured, or at least 'REALLY' able to return to work... AND I would have had my company health insurance to pay for all of these terribly expensives meds, hospital rooms, well, you name it. But I didn't. One week... Plus one (of a number) of mis-diagnosed treatments AND false 'cures'. Oh ,welll.. Anyway, I don't know if my situation is applicable to anyone other than me.. The road to 'correct' diagnosis was a long N winding one.. Sometimes ,when life gives you lemons,... you just want to hurl them at someone, right? In the meantime, weigh your options, consider them carefully

 

[Nancy Lee]

Just popping in with a friendly :welcome: to the forum!

Any questions please ask away and in the meantime feel free to join in any conversation.

You will find a lot of useful information browsing through the forum headings.

Believe me when I say, now that your husband has been diagnosed..
things will get better!

Heart hugs~Nancy

 

[dazed]

I have good news. After 2 days of no action he has finally had normal bm's today. If you could see me now, I'm doing my happy dance!!! This is better than what it's been in a long time. So I'm praying we can keep it this way for a while at least. Doctor gave him Cipro to take but we held off a day and things started picking up.

Went to see the doc's nutritionist yesterday. That was a complete disaster. I never seen anyone so incompetent. She didn't even work up anything for Crohn's but instead for the Hirschsprungs which she kept pronouncing completely wrong again and again even after us and Doc corrected her several times. Told my husband he's approaching obese which I almost burst out laughing because she must not have looked at him in the 40 min we were there to see that he body builds (well did up until a few months ago but still in pretty good shape) and thus the higher number. I brought the bag of vitamines he's taking and she just kept saying "No, No, No" after each one. How if we were a frog then maybe for a couple of them. She also said that it's not good to take them seperate so I wandered what you guys thought of that.

Here's what I'm giving him so far:
L-glutamine
N-acetyl glucosamine (n-a-g)
ester-c buffered with bioflavonoids
multi glandular (because it has for the Duodenum in there)
enzymes
coq-10
liquid b-12 under tongue
liquid multi
aloe vera
flax seed oil
cod liver oil
pro-biotics (50 mil)
melatonin (saw it may help on one of the threads here)

The new diet seems to be helping. He went back to work today. His boss seams mad at him though. We get the impression she's not very sympathetic or maybe thinks he's milking a stomach ache or something. We'll see what happens. Like has been said on here before, people just don't get it unless they themselves or have a family member that is going thru it. We're getting new Ins. first of the year and so will have to get new doc and nutritionist. I think it will be a good change. Sorry this is sooo long. Just wanted to share the good news and see what you thought about the vit. Thanks guys!

 

[dazed]

Sorry, I meant to start out in my last post by saying thank you so much to everyone for your kind words and advice. I kept referring back to all the posts each day I was just so tired and running non-stop getting stuff for him to respond to tell you how much it meant to me. Your experience and knowledge is a HUGE help for us who are just starting out. Thanks again everybody!!!

 

[Kev]

Relax, Dazed.. your among friends. we know the hassles, distractions, all of that. A simple 'thanx' is more than enuff. let us know how you make out with new docs

oh, too bad about that nutritionist. they aren't all like that. better luck with next 1

 

[Cara Fusinato]

Hi Dazed, my advice is to let your husband's system settle down before searching for something else to try. Search for food that is easy to digest and healthy. Let him keep a food journal of what feels OK and what seems to bring irritation. I suppose I go with the "no sudden moves" theory. Hang in there and I wish you both the best