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In need of fellow Crohnie's support and HELP!!!

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Posted 10/1/2008 2:56 PM (GMT 0)
Ok, Here's my story in a nut shell. And I need help, please. I've had Crohn's for about 17 years, but actual diagnosis came 10 years ago (why does it take them so long while we suffer in the dark??) I am 31 years old with a 16 month old daughter (pregnancy was the best thing EVER!! total remission) I have been in the ER about 15 times with severe flare ups: pain, bloating, cramping, vomiting hell. I'm the type that waits until the sun comes up and I can't even walk or talk to finally go to the ER b/c I freakin' HATE it. Well, I do love the point when the opiates hit you and you just fall apart with joy. But, then come all the tests and the same old, "You have a serious bowel obstruction in need of surgery!"
I have 3 major strictures, never had surgery (I'm terrified) My GI has been pushing for it for years. I'm in a major flare that won't go away!! See, I can usually bounce back from a flare in 6-8 weeks with diet. Not this time. It's been 8 months of hell. I just had a colonoscopy and the scope would not fit into small intestine, even a baby scope b/c it is too inflamed! I look like a skeleton, have become anemic, night sweats, fever, elevated wbc for months, pain with everything that crosses my lips.

This is a good time to add that I HATE western medicine and I refuse drugs. The only thing I take are natural supplements and tylenol. I'm a hippie at heart and I believe that whatever drug they are going to give me I will eventually be addicted to or dependent on and I'm over it! I know this from experience because I have taken them all and been addicted to them all: Remicade, Asacol, Prednisone, Flagyl, Cipro, Donatal, Vicodin, Percoset, Norco, Loritab, you name it and I have been heavily addicted to opiates and now free of them. I feel I'm worse off for taking all of it. I'm sorry if this offends anyone, I'm just telling my story and how I feel. And I definitely don't ever pass judgement on anyone who feels otherwise or who needs and uses these drugs.
I've turned to God lately to take my pain away, helping a little...Also trying alternative infrared sauna every other day to sweat out toxins, kangan water, hyperbaric chamber... I'm desperate. I'm ANTI-antibiotics because I believe that a lot of symptoms are from candida. But, I KNOW I have a seroius infection right now because I can barely walk and feel like there's a watermelon stuck in my colon. I've been on the SCD diet, anti-yeast diet, liquid diet. It all helps a little but at the end of the day I'm still miserable and sick and can't sleep! I'm sick of carrying the cross around on my back with refusing meds. I guess I just need someone to listen and tell me it's ok to take the the Levaquin that my GI prescribed that I've been staring at for 2 months. Any advise or love for me? Thank you for listening to this long post. smhair
Posted 10/1/2008 3:07 PM (GMT 0)
Well when the natural meds don't work anymore sometimes we just have to give in and take the traditional meds. Sounds to me like you have pretty much tried it all and nothing is working. It seems that you have no quality of life anymore either. So maybe its time to put yourself on something or go ahead and have that surgery that might help you to feel better. Why suffer anymore? Why not give in to the western medicine you so "hate" and let yourself get better so you can enjoy life with your baby?

As for the surgery, it is so much better to go in with a planned surgery vs an emergency. Believe me I can attest to that. My first resection was a emergency and was quite traumatic for me. I did have to have another resection a some years later and it was planned, and I did sooo much better in my recovery.

Only you can make the best decision for yourself, but I say why suffer anymore.

Welcome to Healingwell and I sure hope you get feeling better soon.

God Bless,
Gail *Nanners*
Posted 10/1/2008 4:11 PM (GMT 0)
igotalemon - I completely understand where you're coming from. My story is very similar to yours.

Take a deep breath, realize that there ARE times when we can't fix ourselves, and take the Levaquin. I hate that crap as much as you, but holy cow - you're in a bad place and you need something to give you the grounding to get yourself back on your feet! Once you get to "DEATHCON LEVEL 6" IBD meltdown, there's very little diet or supplements will accomplish. Take the Levaquin, please.

Also, one big red flag for me in your post - maybe stop taking the Tylenol? Tylenol, and what they call NSAIDS (non-steroidal-anti-inflamatories) are one KNOWN cause of flares. Even if you've never had trouble with tylenol in the past... and I hate to suggest taking away you're only pain relief... but that pain relief might be part of what is causing you so much pain! I HATE this stupid disease! ((I can't take tylenol myself, or alieve, or any of that stuff - sends me flaring in NO time))

You'll be in my thoughts.... good luck with whatever you do decide.
Posted 10/1/2008 4:13 PM (GMT 0)
Tylenol is the only approved over the counter analgesic we Crohnies are allowed to take. We are not allowed Ibruprofen or Aleve. Just fyi!
Posted 10/1/2008 5:00 PM (GMT 0)
I am a mother that watched the first five years of her daughter's life pass by...it was the hardest thing not being involved because of illness!!  If you have had a flare and blockages caused by strictures, for the last 8 months, it's time to look at your Crohn's "maintenance" a little differently.  I don't think any of us are fans of taking meds, but sometimes you have to.  Sit down with a surgeon to see what you may be a candidate for...laproscopic, stricturplasty(did I spell that right?!) or if you have to have open surgery.  Medical advancements have come a long way since my first surgery 20 years ago...and Nanners is right, it is MUCH better to plan the surgery than to have to have emergency surgery. 

Its a difficult decision, but do your homework, find a good surgeon who can help you the least invasive way possible.  I'll be thinking of you.

Posted 10/1/2008 5:03 PM (GMT 0)
let's see if I've got this straight: "I hate western medicine" "I'm going to be in control of my own health" "I can beat this thing." "All I need is enough (pick one) a:faith b:diet c: will power" That's what I'm hearing. So I have to ask, How's that working for you?

It sounds as though you may be reaching what I call the "cry uncle" point in your illness. That point when you have to stop running in denial from your reality. The time when you have to stand and accept what is, in your life, not what should be.

Western medicine is not your enemy. Western doctors are not the bad guys here. Do you have the courage to face your reality. To accept your disease as part of you and to begin working with your body not against it to walk towards health? I'm all for people remaining active partners in managing their disease. The more you can do to move towards health, the better will your internal resources be armed to minimize the impact of the disease. Sometimes and for some people, a change in diet and/or attitude can tip the balance enough towards health that the need for drugs/surgery is minimized.

But you have to make that assessment based on your reality. Is it really wise to start from a point of certitude "I will not take drugs" I will not have surgery" and then make that your goal? Instead of being determined not to take/need drugs, wouldn't it be wiser to instead focus on moving towards health everyday? It sounds like you are barrelling down a road away from health right now.

Why? Why have you made such an investment in avoiding drugs and surgery? Does it make you feel strong? Better than others who have "succumbed" to the evils of western medicine?

I am afraid that it is this investment you have made that is blocking you now from taking the steps you need to turn yourself around and back on the road towards wellness.

Maybe it is time to let go of you ego and acknowledge that for a little while you need some help. But when you reach for the levaquin, or make an appointment for a reassessment with your GI, can you do so from a place of acceptance and not from a place of defeat?

Sometimes we are strongest when we acknowledge that we are in need.
Posted 10/1/2008 5:16 PM (GMT 0)
Belleenstein, wow, what a strong post and so true.

"Sometimes we are strongest when we acknowledge that we are in need" I think this single line does not only apply to CD suffers but also to life.
Posted 10/1/2008 5:26 PM (GMT 0)
Bellenstein I couldn't have said it better. Very very good post!!
Posted 10/1/2008 5:48 PM (GMT 0)
the difference between mild and moderate changes a lot of peoples attitude towards steroids and other drugs..i think if mine wasn't mild, i probably would be running for some meds too.
Posted 10/1/2008 6:06 PM (GMT 0)
Take the medication. Needing a Crohn's med (not a pain killer) does not mean you're addicted - you have a chronic illness.
Posted 10/1/2008 6:19 PM (GMT 0)
If you want to try the natural approach, here are the things I've found some success with;

probiotics
bee propolis
omegas 3-6-9
fibre supplements
vitamins A and C-calcium ascorbate
chamomile tea with honey
regular exercise
altering diet, no more junk foods, fast-foods, processed foods, caffiene, animal fats as these are all known to exacerbate symptoms, including msg's, refined sugars, sugar substitutes, artificial sweetners.

I'm either allergic or non-responsive to traditional oral RX so I had no choice but to put my huge skeptisism aside and go this route with the naturals and altering my diet...I have still not reached full remission in doing so (likely because of complications with my perianal crohn's skin tags) but I've gone from going 30+ times/day down to 5 and with no bleeding or lower back pain and I now have fully formed stools.

Keeping in mind, what works for some doesn't work for all and often it's a combination of things rather than just taking one thing that aids...and starting one thing at a time is best so you know what (if anything) it's aiding with.

:)
Posted 10/1/2008 7:28 PM (GMT 0)
Hi I know I was very afraid of surgery,fear can be overcome ,once you overcome the fear things will get better because you will be doing what is neded for better health. I thought it would be for a ostomy but it wasn't it was just a resection and not as bad as I feared. Any kind of surgery causes fear. You need to do something here and now's the time.As they say there is a time for everything if your Dr. is saying you need surgery now, it is the time. lol gail
Posted 10/1/2008 7:42 PM (GMT 0)
I've been in this mess for 30 yrs. I understand the impulse to avoid these potentially toxic meds. i have a strong faith in God too. He hasn't healed me, yet. God provided us with dr's. Luke was a physician. It seems that runnign from meds is killing you, quite frankly. I tried it too. My children lost alot of time with mom when they were little, because I didn't understand, or try to treat Crohn's.

This isn't going away. You are robbing your daughter of her mom, and quite frankly seem on death's door. I've had 3 surgeries and now must have another. I look healthy. I'm not, but neither am I skeletal. I was, in the beginning.

You must set aside your prejudices and get treatment. You owe it to your family. Get surgery before it's life or death. It will be. Go on meds. Like it or not, this isn't going away. Learn to live with it in a manner where you will live with it.
Posted 10/1/2008 7:43 PM (GMT 0)
Thank you everyone for your input and love. It really has helped me to see your opinions. Belleenstein, You sound a bit angry and I really didn't mean to offend anyone or say that, "I'm better than others." Definitely not! I'm coming from a place of humility, needing help, that's all. I have had Crohn's for almost 20 years and like I said, from my OWN experience is why I choose no drugs.
I have been on prednisone 5 times and it's disgusting FOR ME and I've been addicted to vicodin and that's hell FOR ME. And "I" feel from many years of experience with all of the meds that it has done me a disservice. That's "why" I have chosen this path for "me" And like I said also, I pass no judgement on anyone who needs or takes these meds. they are the treatment options that we have. Maybe, I can learn from you and take the cross down and stop being so stubborn, but please go easy on me and understand I'm in a very vulnerable and sad state while my whole paradigm is shifting. Thanks. I appreciate everyone's kindness and help.
Posted 10/1/2008 9:04 PM (GMT 0)
igotaLemon I don't believe Bellenstein was attacking you. I think she was trying to show you much of what she experienced in her 30+ years with this disease. She always tells of trying to deny she had the disease and always trying to be the strong one, until she learned to let go and accept that she was sick. I think that was her whole point, for you to realize that you are very sick and need to take care of yourself. Hugs!!!
Posted 10/1/2008 10:57 PM (GMT 0)
I agree with everything Bellenstein said. Great post. But it's your life igotaLemon... you need to choose what is right for you. :)
Posted 10/1/2008 11:01 PM (GMT 0)
I'm a mom too. As a mom, I always put my children's needs first. When my son was 11 and told me he was afraid I was going to die of cancer from smoking, I found the strength to quit the next day, because that was what HE NEEDED. The relief on his face and the tension release in his body when I said I would quit was what got me through quitting. When faced with having a resection, I didn't hesitate, because I was missing my son's football games, I couldn't drive them or pick them up because I had to take Vicodin for the pain and I won't drive on it. (I won't take painkillers at work, so I was living for the moment I got home to take the pain away). I wasn't cooking because it made me nauseous and I was sleeping all weekend so I could have the energy to work during the week. My kids NEEDED me, so I NEEDED the surgery. Your daughter NEEDS you, and it is up to you to decide how she needs you. Does she need you off meds but in pain, no energy to chase her around the playground, not eating? Does she need you to be off to the ER again and again and again? If you choose to have surgery and use meds wisely then you are choosing a small chance of severe side effects and a very good chance of being alot better. If you choose to stay off meds and out of the OR then you are choosing no side effects and very little chance of getting any better, based on what has been going on so far. This is no easy decision and I admire you for trying to get any and all information and advice before making this choice. Hugs to you and your daughter.
Posted 10/2/2008 12:05 AM (GMT 0)
Folks, just a reminder that igotaLemon came here for love and advice, not guilt trips, so let's be gentle :-)

Lemon, I'm not sure if you're aware of this, but Crohn's can be left to rumble along on its own, untreated, but this causes further complications, later. What often happens is that scar tissue builds up, and that can cause blockages that may end up needing surgery etc. I mention this because it may help you to make a decision about your present and future treatment.

Welcome to the forums. I hope you'll get a lot of support, friendship and advice here.

Ivy.
Posted 10/2/2008 1:38 AM (GMT 0)
How long have you been on the SCD?

If you find it helps, I would suggest reading "Life Without Bread." It's a bit more extreme than the SCD, but there are certain implications from stronger forms of carbohydrate restriction.

Best wishes!
Posted 10/2/2008 6:06 AM (GMT 0)
The diet approach works to avoid having food cause irritation, but when the inflammation is already there, you need to deal with it directly. Here are a few things to help with inflammation:
- Probiotics. You should look for a probiotic formula containing Lactobacillus casei as one of several bacteria in the formula. That specific one (and L. rhamnosus) has been shown to reduce the inflammatory agent TNF (the target of Humira and Remicade) as well as displace E.coli from the attachment sites on the mucosa. Avoid the soil bacteria probiotics (HSO's)- they are not well enough understood yet. Ideally, you should look for a supplement that is in an enteric coated capsule. This is not the same as encapsulated probiotics - this refers to bacteria that are coated with something to preserve them from stomach acid. This too is not well enough tested to recommend yet. A good probiotic is Jarrow EPS which is available online. Take 3 a day for at least a month and keep taking them daily. Lactobacillus bacteria do not remain in the gut and must be replenished regularly.

Bee propolis. This is a fairly strong natural antibiotic. It works on a variety of bacteria, fungi and even viruses. You should take this early in the day and then take the probiotic at least a couple of hours later to avoid killing the probiotic's bacteria.

Turmeric. Turmeric needs to be taken only after D has been controlled (causes rectal burning otherwise). It can then replace propolis since it is an antibiotic and it also has useful anti-inflammatory properties. Personally, I take it at breakfast and lunch and then take probiotics at dinner.

Glutamine. Glutamine is used to repair gut tissue. The body's stores of glutamine are depleted by inflammation and so there is a shortage of the necessary materials for normal healing.

You could try a liquid diet - just chicken broth and not much else for 2 - 3 days to let the propolis and probiotics work and then gradually return to your normal diet. As you say, it sounds like an active infection and it needs to be knocked down soon. You have already been on a couple of antibiotics and that may have caused part of the problem. Resistant bacteria take over parts of the gut ecology when the normal occupants of that niche are killed by antibiotics. This makes it harder for the normal bacterial population of the gut to be restored. It also makes more antibiotics ineffective in the long run. The antibiotics may control the bacterial infection, but you can expect it to return unless some steps are taken to help restore the gut bacteria. There is almost no information on restoring normal flora, just reports of abnormal flora in a number of diseases including Crohn's and RA. I hope that you can get relief from something. If you cannot get relief from alternate treatments within a week, please consider using the levaquin, but watch out for the side effects!
Posted 10/2/2008 1:20 PM (GMT 0)
sweetie, you are sick, you are a mom, do whatever you can to enjoy your daughter. let god help you by sending you for help. no one likes surgery, no one likes meds, and no one wants to feel out of control of their life, but it has happened to most of us and most of us get better by letting go. my heart goes out to you, please keep telling us how you are and what you will do next. yp
Posted 10/2/2008 3:27 PM (GMT 0)
First, I am sorry that you are going through all of this horrible stuff. This disease is awful, just awful.

Second, I understand your concerns about addiction to narcotics. I am a recovering alcoholic so I know first hand the devastating effects of addiction. I do however question your concerns about becoming addicted to the crohn's meds. Taking maintenance medication does not equal addiction. Especially, because the basic crohn's meds do not produce any "highs" or alter your sobriety.

At any rate, did you ever hear the joke about the drowning man?

A very spiritual man fell overboard one day while fishing. He could not swim, so he knew he could die. His fishing buddies saw what happened, so they threw him a life preserver - the drowning man refused because he had faith that God would save him. The drowning man continued to pray...he had such a strong faith in God. The next thing you know, a rescue boat showed up and through him a line and told him to hang on and they would pull him in. The drowning man again refused, thinking "God will save me." Finally, a helicopter appeared hovering over the drowning man and lowered someone in the water to scoop up the man and save him from drowning. Again the man refused and said "I KNOW my God will save me" The man finally drown - he could not stay afloat any longer. The man went to heaven and when he came face to face with God he asked, "God, why did you not save me when I was drowning?" God said "What do you mean - I sent you a life preserver, a rescue boat AND a helicopter!"

For what it is worth, I look at medication the same way.

Good luck in whatever you decide.
Posted 10/2/2008 5:01 PM (GMT 0)
I can understand not wanting to take medication. I was at one point feeling the same way. I though with diet and being health I could be fine. Well, I was not fine and it was not just affecting my quality of life but also my family. I had a hard time driving to my parents, they live over an hour. I missed them so much, before I would see them every week. My fiance has suffered a lot and I know I want to have a great and long life with him. I know I could not go on this way so I did it I now take medication. Now things are much better for me and my family.

I encourage you to really think this over for your daughter. I grow up with a mom that was sick she has diabetes and she did nothing for many years to help herself. It was awful, she now regrets not taking control sooner, she missed out on a lot. I'm going to be honest it still hurts sometimes that she was not there when I needed her.
Posted 10/2/2008 8:52 PM (GMT 0)
Consider that you might have a wheat allergy! That's why I HAD Crohn's disease. I am off the wheat now 3 weeks and no more pain and diarrhea. Before that I tried low wheat (sour dough bread, etc...) and I showed huge improvements. No more bloating, joint pain and even my asthma is improving. I can smell things I never smelled before.

I've been on inhaled steroids for 15 years and have suffered from asthma and hives. about the same time I had 2 Crohn's related surgeries. I always felt that it was all connected and now I know why. Here are the symptoms, and I also was told joint pain was on the list.

Flushed face, hives or a rash, red and itchy skin Swelling of the eyes, face. lips, throat or tongue Trouble breathing, speaking or swallowing Anxiety, distress, faintness, paleness, sense of doom, weakness
Cramps, diarrhea, vomiting A drop in blood pressure, rapid heart beat, loss of consciousness

For more info go to www.celiac.com


Best wishes!
Posted 10/6/2008 7:00 AM (GMT 0)
GLuten Free Girl, I've been gluten free for 8 months and I've never been sicker!!! Thanks for the suggestion because I really feel that it is a problem protein and many could benefit from omitting gluten... As for taking away my Crohn's, it didn't do much and I'm still suffering. I still choose to be gluten free, though. Many Thanks to everyone for the advice and love.
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