Anyone with crohn''s? how do you manage it?

[whitby_2773]

so after 20 years of undiagnosed gut pain and 18 months of absolute misery, i finally had the capsule studies in january and was diagnosed with crohn''s. along with that, my dr found a hiatal hernia which seems to be causing all sorts of problems within my chest. yesterday he found a heart murmur (very related to posture - so i''m wondering how this is all tying in together).

all together, this is giving me all sorts of misery; cramps, acid, nausea, exhaustion, dizziness, lethargy, pain, referred pain, more pain, and on and on and on.

i have a whole battery of new tests scheduled for next week as it seems to be escalating, and so far i''m not on any meds. so i was wondering what meds any PS member with crohn''s might be taking and what effects it had?

is there anything out there that helps??

 

[Beacon]

Sorry to hear you are dealing with Crohn''s. I know one man with it. He is quite elderly. When it gets bad, he takes Prednisone. Not the greatest drug to take, but it does work very well for him when he gets bad pain.

I also know another person who has it, a guy in his 30s. He had a quite bad case and even had to have a surgery. This turned out very well as he is a very active and athletic person after the surgery - hasn''t slowed him down at all.

I hope you get some relief from your symptoms. From what I understand Crohn''s can go into remission periodically. Hope yours goes dormant asap!

 

[D&T]

Whitby, I don''t know much about it, but I just wanted to give you my get well wishes

I hope you get some relief soon.

 

[Kaleigh]

Whitby,
I hope you find relief soon, I can''t offer any advice. I know it''s very painful from what I have read about it. I can only offer you a BIG HUG!!!! Hang in there... Let us know what you find out!!!! xx Lisa

 

[lulu]

I''ve been taking lialda for several years and it''s kept me in remission. Luckily my case isn''t too severe. I wasn''t diagnosed until 40. Never had to do steroids so far.

I''m pretty sure there are several support groups on line.

 

[FrekeChild]

I had a friend in high school that had a severe case of it. I remember her telling us that the doctors didn''t expect to see her graduate high school. FYI, she has her Masters now and is working towards a PhD.

I don''t know what she''s taken or anything though.

 

[House Cat]

Hi Whitby,

My 15 year old son has Crohn''s. He''s been diagnosed for about 8 years now. Treatment can be different for each individual, but I can share with you what we''ve learned and what has worked for him. He is pretty much in remission now. He had a colonoscopy about six months ago and his GI specialist said that if he didn''t know my son''s history, he wouldn''t even know he had Crohn''s. So, health IS possible.

When he was first diagnosed, he was in the middle of a terrible flare. I''m certain this is common for most. This is what leads to diagnosis. Considering no treatment is being given at the time of the flare, things are just bad. What I can say is that prevention of a flare is always key, because getting a handle on a flare can be very difficult. I know this doesn''t help right now.

Did they tell you where the disease was most prevalent? You may well know that Crohn''s can attack the entire digestive system and the eyes. Most people have one specific area that gets the worst of it. My son''s lower intestine gets the worst of it.

When he was first diagnosed, he was given Pentasa, which is a 5 ASA medication (aspirin based,) Imuran, an immunosuppressant, prednisone, and regular Remicaide infusions. He actually had a very bad reaction to the Remicaide, so we had to stop treatment with that drug, which was unfortunate because it was the miracle drug for Crohn''s at the time. So healing took time. It did happen though. He also had horrible acid reflux, so zantac was given.

It seemed as though his whole digestive system was just going haywire, kind of like what I''m hearing from you.

The immunosuppressant is the heavy hitter in his arsenal of drugs. He''s no longer taking Imuran. Now he take 6-mp or Mercaptapurine but it was explained to me that Imuran just breaks down into 6-mp once it is taken. These drugs do exacty what they''re named to do. It''s interesting though, his entire immune system isn''t compromised. The only other thing we need to be vigilant about is warts. Apparently these drugs make you very susceptable to the wart virus. But he isn''t catching every cold or flu out there. Oh, and I should also mention that when he has a fever of say, 100.1, he would really have a much higher fever. The drug keeps his body from responding to infection in a normal way. So, I do have to watch him in that way as well. Ok, I''m rambling a little bit.

I think that the doctor will most likely put you on an immunosuppresant of some kind, unless you have some underlying issue that would keep you from being able to take the drug.

The prednisone is only given during flare times. I won''t lie, it''s not a fun drug to take, but it''s a necessary evil. If you are totally opposed to taking it, ask your specialist if you can try taking the other meds and see if you can get things under control without it. Sometimes that happens.

If you aren''t seeing a GI specialist, it is time to get one. I know a lot of people with Crohn''s who don''t have a specialist and they aren''t getting good treatment. I hear about their treatment plans and they just don''t make sense to me. I''ve done a lot of reading about the disease and treatments and then they tell me about their meds, etc...and it''s stuff that is very off the wall! It''s appalling. There are very specific treatment plans out there and good docs very rarely deviate from them. Arm yourself with information. There is a lot of reading out there. The Crohn''s and Colitis foundation is a good place to start.

Natural help: Omega 3 fatty acids. They strengthen the cell walls. This is important when you''re talking about Crohn''s, which makes your intestines look like they''ve been hit with a cheese grater! So take them everyday! Trader Joes has good quality Omega 3''s that have been filtered for mercury.

Probiotics. Culterelle is recommended by my son''s GI specialist, but if you don''t want to go that route, just be sure that what you''re taking or eating is active and will stay active when it passes through the stomach. You also want to make sure it has bifidobacterium in it.

I''m sure you''ve done some reading. There is a whole list of trigger foods out there. While in a flare, stay away from them! You have to treat yourself with kid gloves right now. You need rest. You need to eat mild food. You need to keep the stress at a minimum. These things are very important! You want to get yourself into remission. At that point, you will be at a point of maintenance, but it will take a bit of work.

Mostly, I wish you healing and I''m sorry that you are having to deal with this Whitby.

 

[somethingshiny]

I have a cousin with Crohn''s and I know that it has made her miserable so I''m very sorry to hear this.

My cousin has had several surgeries and lots of her intestines removed, she''s on a very restricted diet and is on steroids all the time. So, for right now her symptoms are managed. She is currently planning her wedding and her only annoyance is that she has to buy her dress about 3 sizes too big in case she''s swollen at the time.

Good luck to you, Whitby!

 

[movie zombie]

i know it can lead to blindness and i know a woman who had colon surgery in an attempt to deal with it.....fail.

i did some researach sometime ago and it seems that diet is important....avoid all dairy for one.

i''d encourage you to do a lot of research before starting on any meds. the side effects can be as bad or in some cases worse. prednisone should never be taken on an ongoing basis.

what is important is not to deal with the symptoms but try and get to what is causing the symptoms and eliminate the triggers. it might be possible to get the flare ups to be infrequent rather than ongoing and to lessen their severity.

good luck. i know this is not an easy dis-ease and that it is tempting to go along with standard medical practice. but ultimately you are in control of your health and i hope you find what works for you.

mz

ps here''s a place to start: http://colitis.emedtv.com/crohn''s-disease/crohn''s-disease-diet.html

 

[whitby_2773]

Thanks Beacon, D&T, Kaleigh, lulu, Freke, somethingshiny and movie zombie – I appreciate your input and especially your good wishes. One runs on good wishes at a time like this…

House Cat – thank you for all the time you put into your response – I appreciate it. Reading some of these stories, I feel like a bit of a fraud. According to the latest colonoscopy/gastroscopy/capsule study, I don’t, as yet, have any scarring, which is excellent news. The ulcerated site (localized at the time of the study – the gastro though I was going into remission) is in my terminal ileum. My situation is complicated by the hiatal hernia, which has nothing to do with crohn’s but which confuses everything no end. The heart murmur is new-ish, tho I started showing an irregular heartbeat about 18 months ago. I have no idea how that ties in but it seems to come on when I’m laying down, so I’ll be interested to see what my cardio guy says. my guess is that it somehow ties in with the hernia, which developed about the same time. I’m hoping that getting the hernia fixed might work out the heart thing also. When I’m standing and exercising, my heart beat is strong and regular – which is exactly the opposite for any sort of heart disease. It just really does seem to be related to posture…

At this point, the thing which gives me the most relief is simply not eating. That often calms things down sufficiently to allow the inflammation to recede. I find heavy animal fats are the worst – any non-soluble fats give me problems, but they’re relatively easy to avoid. I eat a LOT of omega 3 – purposely – and make sure my diet has lots of soluble fibre and water; the last thing I need with this is internal pressure! So when I eat, I make sure that anything that goes in my mouth has a nutritional purpose. And I am SO off sugar and white flours! They’re the WORST for me.

The bad news is that I’m allergic to NSAIDs. Cool, huh? So I go straight to prednisone when anything gets prescribed. I LOVE prednisone – it’s the silver bullet for me, and I have no side-effects which I can see. I’m only on it for short periods (think days, not months), and it seems to pull things into line. I’ve only been on relatively low doses of it (20mg/day) and it seems to work for me, so I’m guessing my crohn’s is mild. But for a mild disease, I have to tell you, this sure kicks my butt when it’s in full flight.

Unless I absolutely have to take them, I want to avoid immunosuppressants. As a result of being on antibiotics probably approaching 100 times at this point in my life, my immune system is somewhat screwy as is, and I have a hard time with upper respiratory tract infections. Over the last few years I’ve tried to stay away from antibiotics as much as possible to give my own immune system a chance to kick in, but I don’t see me handling immunosuppressants well. For me, this is a last resort.

I need to start on the probiotics immediately, and am hoping I might get some help from them. Things are not, however, ‘desperate’. I’ve had periods of up to 3 years with no symptoms and am aware there’s more I could be doing myself to regulate this. The last 18 months, tho, has been rugged on and off (tho even in that I’ve had periods of some months where it’s been possible to absorb it into every day life without too much difficulty). I actually feel a great deal better when I exercise. It really is a day to day thing - some days I wake up and think "nope - today is gonna be a 'quiet' day." Other days it's 'up and at 'em!' Luckily, I work as a writer, so my days are my own and my schedule does what I want it to. I manage to do all the normal things - eat out (tho often with the help of pain killers), entertain quite a lot, throw parties, travel, work with my dogs, garden, do a lot of housework (hey, I have 3 dogs!) and exercise. Working from home helps, as I said, but I do manage to be reasonably productive in that area also. Reasonably. That's the first thing that gets chopped on bad days.

Anyway, I’m sorry for rambling on. My husband is one of those people with UNBELIEVABLE good health and, while very sympathetic, really has no concept of how this feels. So thanks for giving me your input and for listening.

 

[movie zombie]

probiotics sounds like an interesting area to explore.

again, re prednisone: the side effects are not necessarily visible. liver damage over long use [more than 2-3 weeks or accumulation of days that equal that in any one year] can be a problem down the road. make sure to drink lots and lots and lots of water.

i lived on prednisone every year [2-3 weeks once or twice a year] due to poison oak reactions over a 10 year time span. it was a doctor in ER that talked me out of continuing the practice due to the side effects. i''m talking really nasty reactions with seeping skin....and worse. i learned to tough it out by utilizing other things.....but it wasn''t easy. thus far no evidence of liver damage has surfaced.........that i know of.

however, i''m not sure that if i were in pain such as i understand crohn''s produces that i too wouldn''t use it periodically if i had done all the dietary changes, etc.

mz

ps you''re not rambling!

 

[packrat]

I''m sorry you''re dealing with this. I don''t know anyone who has it, so don''t have much to offer..but I can send you hugs and well wishes instead!

 

[Sundial]

Whitby I am so sorry to hear that you were diagnosed with Crohn''s disease. It can be difficult to cope with a chronic health condition, but as others have stated it is possible to lead a normal life. My son who is now 23 was diagnosed with Crohn''s four years ago. In that time he has been on a number of different medications and has had three surgeries. He was off at college when he was first diagnosed and he wasn''t good about taking his meds. They put him on Remicade which is administered at the hospital intravenously. That seemed to help but he developed skin rashes that they were concerned might be a result of the medication. They put him on azathioprine but before it had time to start working he experienced a bad flare up and had to have surgery to remove part of his intestine. He even had a colostomy bag for a while to give his system a chance to calm down and heal, but they were able to reverse it. He is continuing to take the azathioprine and seems to be in remission now. He has had some bone loss in his hip from when they put him on steroids while he was in the hospital, but they don''t feel that it needs surgery at this time and they will continue to monitor it. Now he is very conscientious about taking his meds, making regular appointments with his specialist, and watching what he eats. He also takes vitamins and fish oil capsules. Different things work for different people so you have to figure out what is best for you. Read everything you can and make sure you have a gastroenterologist that you have confidence in.

 

[whitby_2773]

thank you again, m_z, and thanks packrat and sundial. PS is an amazing resource of info and experience - it never ceases to amaze me!

sundial, my diet has suddenly become incredibly bland. when i am not having a flare up, i can eat anything. but when i *do* - gees - the more i avoid the better! i'm starting to think i need vitamin supps, and the more i read, the more i think that's probably true. according to latest tests, i have good bone density (better than normal, in fact), but i've been on no regular meds so far and have only taken prednisone for short periods of time and only a few times in total.

and sundial, i'm so sorry to hear about your son. i've read about so many people having surgery for crohn's, but am aware it's a last resort as crohn's generally recurs - just either side of the incision. what symptoms led to him having the surgery? did he have potential perforations? scarring? abscesses? i've had none of those things as yet - just inflammation and ulcers in one localized area, so am not looking like a surgery candidate - at this stage of my life, anyway. i *am* concerned about what the future might bring, tho.

this afternoon i go to the cardio, so i'll be curious to see what *he* says. all i want to do is sit at my desk and write my books - this is SO tedious! i feel like i have a perpetual case of appendicitis and it HURTS.

 

[whitby_2773]

House Cat

i should have said before - and failed to say, which was remiss of me - that i''m so sorry to hear about your son. i can''t even imagine being a child and going through this. he must be a trooper of the first order! please tell him that there is a wimpy middle aged woman on PriceScope who is taking him as her inspiration; if he can do it, so can i!

for me at this point, the goal is to strive for normalcy. i sleep at regular times, get up every day, do all the normal grooming stuff, eat three (albeit tiny) meals a day, and make sure i get out of the house at least once, even if it''s just to talk around the block. the amusing thing is that i really do look like the picture of health, and i can''t tell you how often people who don''t know i have crohn''s say to me - "how are you? you look really WELL." and i do. i look normal and i try to live normal. it''s not without cost and struggle, however - but i''m sure i''m not telling you anything. the one thing i abhor is sympathy, so i tend to keep it to myself except at times like this when i just really need some input. is your son like this also? i can imagine it really frustrates him to be the center of attention for his health; no 15 yr old boy wants that!

this must also have been tough on you and on your family. i''m sending you many positive thoughts and well wishes for endless energy, patience of oceanic proportions, and the ability to keep a smile on your face at all times.

thanks again House Cat - i really appreciated your response.

 

[Sundial]

Date: 7/13/2009 2:54:00 PM
Author: whitby_2773
thank you again, m_z, and thanks packrat and sundial. PS is an amazing resource of info and experience - it never ceases to amaze me!

sundial, my diet has suddenly become incredibly bland. when i am not having a flare up, i can eat anything. but when i *do* - gees - the more i avoid the better! i''m starting to think i need vitamin supps, and the more i read, the more i think that''s probably true. according to latest tests, i have good bone density (better than normal, in fact), but i''ve been on no regular meds so far and have only taken prednisone for short periods of time and only a few times in total.

and sundial, i''m so sorry to hear about your son. i''ve read about so many people having surgery for crohn''s, but am aware it''s a last resort as crohn''s generally recurs - just either side of the incision. what symptoms led to him having the surgery? did he have potential perforations? scarring? abscesses? i''ve had none of those things as yet - just inflammation and ulcers in one localized area, so am not looking like a surgery candidate - at this stage of my life, anyway. i *am* concerned about what the future might bring, tho.

this afternoon i go to the cardio, so i''ll be curious to see what *he* says. all i want to do is sit at my desk and write my books - this is SO tedious! i feel like i have a perpetual case of appendicitis and it HURTS.

Whitby surgery is definitely a last resort because as you say it is not a cure. My son''s first operation was due to a fistula. He was having severe pain and chronic diarrhea. After the surgery he was still having leakage so they went in to have another look and he had a perforation. That time they put in the colostomy bag. Then the final surgery was to reverse that. They told my son to eat bland low fiber foods when he is having a flare up, but to bulk up on fiber when he is doing well. Please avoid the steroids if at all possible because they really can have nasty long term side affects. I feel so bad for you and I wish you all the best!

 

[House Cat]

Hi Whitby,

I'm going to tell Drew what you've said. He'll get a kick out of it! Then, he'll say, "it's not that bad." Considering the fact that I've seen him endure more than any kid should ever have to, I've come to the conclusion that kids are just more pliable than adults. They really know how to roll with the punches, I think. I also think it was eye opening for him to have to go in for his Remicaide infusions and sit next to tiny children receiving chemo. Drew is an empath. I wish he weren't in so many ways because I want him to validate his own feelings. I fear the flood gate will open at a really bad time in his life. But for now, he is sweet and strong and wise beyond his years.

Like I said though, he's healthy now. This is the time when the disease should really hit, according to the docs, but I think we got him diagnosed early enough that he might escape serious issues and surgery.

His diet is awful. It is low fiber, high dairy, full of beef, no vegetables...oh goodness, it makes me shudder. Each time we meet with his GI doc, I talk to him about my son's horrid diet. The doc tells me that too many times, people with Crohn's stop eating and let him eat what he wants. Some nutrition is better than no nurtrition at all. (I give my son supplements.) When kids are growing, caloric intake is a big issue. Kids with Crohn's will simply stop growing due to the fact that their bodies can't absorb nutrients and because they stop eating. I think because you aren't growing, you can skimp a bit, BUT, you must eat just the same to supply your organs with the nutrients they need. The body will not burn fat in starvation, it will begin to feed on itself. So, eat your small meals. I second the advice to stay away from high fiber right now in the flare. I know it seems counterintuitive, but fiber irritates the intestines. They need to heal.

Mostly, you will find what works for YOU. Striving for normalcy is all that you can do. I'm sure you've heard this before with your line of work, but some people suffer from disease, some cope with disease, others LIVE with disease. It's a process. Each person is individual and what works for one person, very rarely works for another. Your good attitude, well, that always works for everyone! Be open to the meds and listen to your docs, but take charge of your care. It's a careful dance, but I have a feeling you will be doing the tango better than anyone!

BTW, you aren't a fraud. Crohn's, even if it isn't requiring surgery after surgery can be a very difficult disease to live with. The diagnostic testing alone is so invasive and difficult to go through, so I want to send those positive thoughts and well wishes your way too! Thank you for those. They mean a lot.

~~I wrote this in the morning and let it sit...I told Drew what you said, he said, "That's so sweet!" Then predictably went into how it's not so bad. He thinks you're pretty cool Whitby.

Take care and keep us updated. I'd really like to know how things pan out for you.

 

[PinkTower]

Hi Whitby!
I thought I was the only person on here with Crohn''s. I had sent a shout out to Sundial a while back to see how her son was doing. I''m glad you shared your situation.
I am 53 and was diagnosed about a year and a half ago. Crohn''s is so insidious, huh? Once all the pieces of the jigsaw fit together, it was such a relief to know what was really wrong.
I think the thing about Crohn''s, at least for me, that caused me to wait so long to see a doctor is that the symptoms seemed identical to stress. Oddly enough, my husband, who could see the big picture more objectively, never thought my problem was stress.
I finally reached a breaking point, was hospitalized 14 days, and found out what was going on. Looking back, I cannot explain why I was so resistant to seeing a doctor earlier.
I could write a tome on Crohn''s, but I won''t. I notice you are on Pred. Hope your doctor can wean you off that. My doctor worked with me for a slow process of gradually lowering the Pred. while gradually upping the Imuran. I also take Pentasa.
I am doing really well right now. I am a Montessori teacher, and have been amazingly well in 2009. I only missed one day of work this past year. What a change.
I do take care of myself. Except for my job, I spend a lot of time at home. My doctor was adamant about my learning to say no to other activities if I wanted to work. I love my job, so I chose that over other things.
You need also to avoid all the stress you can. Stress does not cause Crohn''s, but it will bring the symptoms rushing back upon me in a matter of thirty minutes.
Just remember, you are not alone. Page me anytime. I would love to talk to you privately as well if you wish. Perhaps you could ask the moderator to put us in touch if you wish. I doubt most people want to hear the gory details of ''gut disease, '' LOL

-Pink

 

[whitby_2773]

hi pink tower

thanks for posting. altho we all know about crohn''s, my experience is that so few people actually HAVE it. and almost nobody seems to be aware how severe it can be and how difficult to treat. i''m glad you''ve found a work/life balance - it''s not easy, is it? i, too, have found that stress sets it off like nothing else, tho none of my family or freinds thought it WAS stress, which of course it wasn''t. but stress is the huge precipitator.

i''ve been under the care of gastro specialists for 20 years now, because this has been going on forever. but it''s only the beginning of this year that i got a definitive diagnosis. my problem was that my crohn''s lives in my terminal ileum, so cant be seen in a colonoscopy or normal entroscopy. capsule studies have only been around since 2000 and readily accessible for the last 5 years or so, and i''ve lived in 3 different countries over the last 9 years, so nothing has been stable for me.

i''m not on prednisone, tho i *have* been on it a couple of times - only for a few days. i was once on it for a few weeks, but that was for pneumonia. i''m aware of the horrible side effects, so have largely stayed away - both from it, and from all other meds as well. my crohn''s at this point is manageable through plenty of rest, diet and just generally tolerating pain. if i stay well rested, i can largely avoid flare-ups.

like you, pink tower, i''ve reached the place of realizing i have to avoid all stress to keep this at bay. it''s my goal going forward to do this. i want to be well.

let''s stay in touch over this, ok? you, me, sundial and house cat need to be our own support group here on PS.

warm wishes, positive vibes, all manner of zen, special PS dust and prayers to the only Person who can fix this go out for all of you,

xo

 

[whitby_2773]

house cat -

please tell drew he made me laugh!

he''s a cool kid.

 

[PinkTower]

whitby, house cat, sundial, lulu,


We have our own clique! I''ve never been in a clique before.


-pink

 

[Hudson_Hawk]

Whitby, I don't have crohn's, but I do have another intestinal autoimmune condition so I can empathize to a certain extent. I hope you get everything squared away and you start to feel better soon. Restrictive diets suck but taking massive doses of meds sucks even more. I hope you start to feel better very soon!

 

[whitby_2773]

thanks mrs HH

i''m doing my best to get this under control and squared away. the problem with crohn''s is that it can lead to so many other things - like hypothyroidism, hormone imbalances, cancer - it just goes on and on. i''m getting tested for everything right now and will have some results next monday, which i''ll be really grateful for.

most of all i just want to go to australia and have a great vacation.

HH, i''m sorry you have gut issues also. i hope whatever it is is under control and that life for you will be wonderful - you''re just starting a fabulous new stage of your life.

hugs to you....

 

[lulu]

My doctor really pushed me to join a support group. I said I was not going to a Valentine''s dance with a hundred people fighting for the john. Can I be in your support group instead?

 

[PinkTower]

Whitby,
Congratulations on your upcoming trip. That will be the best ''tonic'' for you. I know, because I just returned Saturday from my first flight since I learned I had Crohn''s, a year and a half ago. I had not flown because of the immune suppressants. For me, everything went well, and we had a wonderful vacation. Please share some pictures with us, and have a wonderful time.
Pink

 

[whitby_2773]

Date: 7/19/2009 10:52:19 PM
Author: lulu
My doctor really pushed me to join a support group. I said I was not going to a Valentine's dance with a hundred people fighting for the john. Can I be in your support group instead?

lulu - pls be in my support group! i think i'd like a support group that discussed crohn's....while showing off nice jewelry....quite a lot!

something i wanted to ask you all...

have any of you had a C reactive protein (test for inflammation) test since being diagnosed for crohn's? i've had mine taken before and it was normal. but i had it done 3 weeks ago and all my other results were normal - except for that one. average range is 0-3 - mine was 38.34. this freaked me out somewhat, but apparently this test can be elevated by any auto immune disease. the result is also used to predict the likelihood of a cardiac event occurring, but if the elevation is caused by auto immune it doesn't necessarily indicate an upcoming heart attack or stroke. so in other words, it could mean either. i would normally put it down just to the crohn's (i had the tests obviously, in the middle of a flare up), except for the fact that both my parents died in their 50's from heart attacks. i am 49. so this result is worrying me and i wondered if anyone else had had a high CRP reading?

 

[Lilac]

whitby - I''m so sorry you have to deal with this pain! I don''t have Crohn''s but I had a stomach infection (C. diff) last year and they thought I might have had it based on my symptoms - I went through all the tests to rule out Crohn''s because they thought that''s what was wrong with me for a while (so I can somewhat imagine what the pain might have felt like).

I do have a friend with Crohn''s and I know in high school it was really REALLY bad for him for a while and he lost a ton of weight and that''s when he was first diagnosed with it - but the good news is now he seems fine! There are certain things he doesn''t eat and he avoids alcohol, but I don''t know much else other than that looking at him you wouldn''t think anything is wrong at all now. He has a GI he likes very much and he has been very helpful in coming up with a plan of how to keep him healthy and pain-free. My friend doesn''t really like to talk about the disease much, but I can try to find out more information from him (or at least bring it up and see if he''ll talk about it) - I remember when I was sick last year he talked about it because he said all my symptoms sounded like his, but since then he hasn''t spoken much about it.

 

[upgrade]

Whitby- I''m so sorry you have to deal with this. It''s not a fun disease but there is relief out there- you just have to find what works for you. I haven''t read all the responses so forgive me if I''m repeating things. My husband has Crohn''s and has had 3 Crohn''s related surgeries in the last 5 years so I know way more about it than I''d like to.

It seems to be one of those things that causes different symptoms in different people and the treatments can vary greatly too. My dh would get the usual bathroom realted symptoms along with high fevers, stomach pains, extreme bloating (he had clothes in 3 sizes) and arthritic like joint pains. The fever and joint pain were the most painful for him- it was like having a bad case of influenza and it happened many, many times throughout the year. He was on Pentasa for years and tried all the other availbale medications but Pentasa was the best one for him at the time. He took Prednisone for flare ups but we REALLY try to avoid that one. It works fantastically well but the side effects are a little scary. After his recent round of surgeries he finally qualified for Remicade and let me tell you- it''s a miracle drug. It''s put him into full remission. It does take a toll on the immune system, but in his case it was worth the risk. He has noticed a slight increase in the number of colds he catches and the odd one does result in something requiring antibiotics but he would much rather deal with that than the excruciating pain the Crohn''s was causing. Remicade is hugely expensive though and I don''t know how US health insuarnce works. In Canada you can either pay for it yourself (there may be extended health plans that cover it but our doesn''t) or you have to try all the other available medications and if none of them work for you, your Gastro can apply for a special authorization to ahve it covered by the gov''t. Thank God because for dh''s dose, it''s $4000 a pop and he needs an infusion every 6 weeks!

The other thing that''s made an enormous difference to him was finding a really good Naturpath- there are a lot of bad ones out there but if you can find a really good one, it helps a lot. He did food sensistivity testing on him and he has since cut sugar, dairy and wheat out of his diet and that has made a world of difference. There are a lot of foods that are not recommended for Crohn''s patients in general (anything with cellulose is bad- corn, pop corn, nuts, shredded coconut) but everyone is different and you really need to find your trigger foods. He also takes an arsanal of supplements to boost his immune system and help his digestion. He takes Cal Mag, acidophilous, silica, some liver support stuff, vitamin D, a multi, vitamin C... his vitamins are a meal in themselves but I swear it helps him.

The most important thing you can do, in my opinion, is make sure you have a really excellent gastrointerologist. That doctor will become your new best friend!

 

[whitby_2773]

hi lilac

i can understand your friend''s position - it''s not a pretty disease to talk about - it''s all cramps and poo and diarrhea. and guys are so much worse about this sort of thing than women. i think i''ve been pretty lucky so far; it hasn''t debilitated me as yet, tho it''s certainly inconvenienced me. i see those things as different, however, and feel myself to be lucky.

thank you for your kind wishes - i really appreciate them.

 

[whitby_2773]

hi upgrade

i''m so sorry to hear what your husband has been through, but VERY glad for you both that he''s found something that has a positive effect. one thing most people who dont have crohn''s don''t realize is just how much it flat out HURTS. the pain involved is CONSIDERABLE. is he able to go work, upgrade? as you must know, extreme crohn’s more or less incapacitates a person. it’s a cruel disease.

I’m also trying to find out if anyone with crohn''s has had their C Reactive Protein taken, altho i might start a new thread for this. but if so, does anyone know their result? i posted a little earlier about my situation with this blood test, and it''s a common one for crohn''s, so i was wondering if anyone else knew their results, or the results of someone they know or care for.

anyway, i''m off to australia for a few weeks on monday, so here''s hoping everything holds together well for me while i travel. all prayers gratefully received!