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Posted 4/10/2012 5:03 PM (GMT 0)
I found out yesterday I have Crohn's. I feel filthy and shame and I stink allthe time. I'm a model, and now I can't be beautiful and ladylike. This will end my career. My anger is overwhelming and I can't overcome the fear and hopelesssness. What do I co.
Posted 4/10/2012 5:30 PM (GMT 0)
I am sorry that you have this illness, glad you found the forum, and confused about why you feel filthy - is it because of diarrhea? Once you get the right medical treatment you will feel a lot better, and I don't see why you need to give up your career. What meds are you taking now that you've been diagnosed? Where is your inflammation? What are your issues?
Posted 4/10/2012 7:28 PM (GMT 0)
Taking omeprazole and carafate for hiatal hernia and IBD. Will start Pentasa or prednizone next week. The filth is from the diarrhea and horrendous smelling gas as well as the stink of my body. I can't seem to get clean or touch anyone.
Posted 4/10/2012 7:32 PM (GMT 0)
I'm really sorry to hear this and understand how you feel completely. It helped me to realize when I got my diagnosis that I had already been dealing with the disease for years (since puberty); it wasn't new to me, but I now knew what to call it. And believe me, I had read enough about Crohn's to know I didn't want to be told I had it. I wanted something that could be fixed. But we never get a choice do we?

You are still you. You are still beautiful. And EVERYBODY stinks when it comes to "bathroom odor"! AND it's OK to be angry right now. But it won't necessarily always be this bad.

There are many with Crohn's who still accomplish their goals; some of us have to readjust and realign in order to do it.

AND you have nothing to be ashamed of; we didn't do anything to bring this disease on us.

God bless you. Joy
Posted 4/10/2012 7:38 PM (GMT 0)
Thank you for your reply. I hope I can be as strong as you are. The anger and fear are really strong right now. Is this process like the grief process?
Posted 4/10/2012 7:47 PM (GMT 0)
On reading your second posting on this, I understand more clearly about your odor comment. When you're flaring it can be that way, especially if you have an infection, but it won't always be that bad.

Believe me. I know. I've had nurses open my hospital window in January to air out my room when I had become septic, explaining to me, "you've got to breathe too!" But I haven't smelled that bad since. We're pretty much normal smell-wise, but don't be embarrassed to talk to your doctor about it.
Posted 4/10/2012 7:49 PM (GMT 0)
Yes, it IS like a grief process. Any serious disease diagnosis is and this is a serious disease.

-Joy
Posted 4/10/2012 7:59 PM (GMT 0)
Thank you for your help. Good sense of humor. Will I have to be hospitalized often and have colonoscopies often? It's in my small intestine.
Posted 4/10/2012 8:21 PM (GMT 0)
The doctor just said crohn's in the small intestine is relatively rare. Anyone know about this? He has no prognosis or long-term idea how this will respond to treatment.
Posted 4/10/2012 8:46 PM (GMT 0)
If your DR can't give you a prognosis maybe you need a new DR! And why do you have to wait until next week to start your meds? It seems like you could start right away and start feeling better really soon.

Crohn's has a variety of manifestations. Most people with Crohn's have inflammation in the terminal ileum, which is the very end of the small bowel, but not all people with Crohn's have this. Pentasa is pretty effective at treating the small bowel, but it does not quickly achieve remission - usually doctors use steroids for this. Other, more effective meds have recently been developed - they are biological medications and can be very expensive if your insurance doesn't cover it well. But they have been shown to be very good at getting someone into remission. Look up remicade, humira, cimzia for example.

If you can get your disease into remission you should not have to be in the hospital. You might have to have colonoscopies more often than the average person, but since your disease is not [yet] in the colon there doesn't seem to be a need for that. How was your illness diagnosed?
Posted 4/10/2012 8:48 PM (GMT 0)
Every patient is different and the disease does tend to act up (flare) and quiet down (remission). Some people have to hospitalized often and others rarely. I personally have had like, one year that was really bad and went into the hospital several times and stayed for weeks, but mostly that's not been the case. I've had one major resection. BUT I've not been hospitalized in over eleven years and currently I'm not on any medication strictly for my Crohn's. I have more problems with the Crohn's related arthritis (not every patient will have it).

I'm not sure how to answer about a colonoscopy since you have small intestine disease. I have ileocolitis (small and large intestine) so colonoscopies are a part of the routine, but doctors are different about how often. I do not have them often personally, but I have had a doctor that wanted me to have one every 6 months, which is not the opinion of the doctors I use now. They are not without risk, and I only will have one as necessary, but that's just me.

Crohn's itself is not rare in the small intestine. Basically, it IS a small intestine disease, but it does occur in the colon and can be anywhere from mouth to anus. The doctor may have meant that Crohn's disease itself is relatively rare. Of course, I wasn't there.

CCFA.org is a good website for learning more about this disease from a scientific standpoint that is easy to read. It was the first place I turned to.

You will get a lot of conflicting advice as there are so many diets and meds and what-have-you, but it's best to pay attention to your doctor. Take care. -Joy
Posted 4/10/2012 9:47 PM (GMT 0)
Reply to Kazbern - Pentasa costs over $800 a monrh - the insurance only pays $150 of that. So I have found it cheaper in a foreign pharmacy. It will take ten days to arrive. Why would I need to be hospitalized at any time-even during a flare? Final diagnosis was made with about a quart of blood tests (one was sent out of state) and 2 pounds of feces. Before that, lots of barium, endoscopy and colonoscopy. Will the disease move to the colon? I thought about a new doctor, but most of the work was already done. I found out today that he thinks I need counseling because I'm so upset....
Posted 4/10/2012 9:54 PM (GMT 0)
Yes, Pentasa can be expensive. My insurance covered it better than what you're describing, but I still paid $200/month for over 10 years. Thank goodness for flexible spending accounts (talk to your employer about that). Crohn's is an expensive illness to treat, but left untreated it can leave you unable to work or enjoy life, so I would always suggest treatment.

I am not confident that a foreign pharmacy is trustworthy. Pentasa is a unique formulation and is the only mesalamine medication that I know of that is active throughout the entire bowel. It may not be the best med for you, though - time will tell. I hope that your order from the foreign pharmacy is indeed Pentasa.

Again, why not start steroids now so you can feel better quickly?

Crohn's can occur anywhere from mouth to anus, as JaSanne said above. Many of us have had the experience that the inflammation moves around, but it is not possible to predict what will happen to any individual.

The only reason you would ever have to be hospitalized is if you become dehydrated and unable to hold food or fluids, due to your illness being uncontrolled. Sometimes that happens (never to me, yet).

How did your DR tell that you had small bowel disease? From the barium study? Colonscopy?

Counseling is a good idea if you are very anxious and depressed. This is a chronic illness that you will need to manage for the rest of your life. It is best to have a positive outlook and a realistic approach to treatment. If you think counseling might be helpful, you should absolutely do it. Some people take antianxiety meds and/or antidepressants, too.
Posted 4/10/2012 9:57 PM (GMT 0)
Reply to JaSanne, Why were you hospitalized? I'm very very scared about being in a hospital, especially for this shameful and embarrassing disease-no privacy or modesty and filth from my body.
Posted 4/10/2012 10:31 PM (GMT 0)
Lady Sapphire - Please please first of all realize that you are NOT filthy. You are sick.  You will have good days and bad, but with any luck you and a decent doctor will find a medication, diet or other treatment that will have you feeling better. This doesn't have to ruin your life.  My daughter was diagnosed four years ago, just before her 9th birthday.  Great birthday present, right?  She had lost so much weight and was feeling so sick for many months, we were grateful to know the answer and begin treatment.  No, not grateful for Crohn's of course... just looking forward to finally being able to help her.  Fast forward four years and you will find her a happy, healthy, normal and NON stinking 12 year old girl. (She is in remission on a medication called Remicade that she gets via an IV once every 8 weeks.)

There are many options for you:  medications, diet (have you ever heard of SCD? If not google it.), EN (enteral nutrition which is basically liquid nutrition to help your insides heal), and biomedical treatments if you choose to pursue a more natural route.  Heck just earlier I read and posted here about a supplement called CLA and how it looks promising for Crohn's.  And there is a ton of research being done on IBDs and new meds are coming down the pike.  Track what you eat and you will begin to recognize which foods are no good for your particular case of Crohn's.  Many here find things like caffeine, soda, chocolate, anything too greasy/oily to be triggers for problems.

Stay positive.  Honestly, NO ONE is perfect.  Your imperfection just has a name now, and it happens to be Crohn's.  It doesn't need to define you.  You are still you!

Posted 4/10/2012 10:37 PM (GMT 0)
The doctor says pentasa will be better and oneprazole and carafate will do until the pentasa arrives. Diagnosis was from blood work and feces. Barium and scopes were not as accurate. We just returned from Japan where we used excellent overseas pharmacies. And the doctor approved it. They won't prescribe pain or anxiety meds. They want pain management and relaxation techniques. It's probably better and safer, but harder right now...
Posted 4/10/2012 10:42 PM (GMT 0)
Scopes are very accurate, when there is inflammation to biopsy. I'm guessing that your DR is saying small bowel disease because there was no inflammation seen on the colonoscopy or endoscopy? It might be worthwhile to talk to your DR about a pill camera, which you swallow, and which provides images of the small bowel as it travels through your digestive tract. That would give you the most accurate understanding of the inflammation you have in the bowel.

I would agree that waiting for the pentasa is reasonable, but not if you are suffering greatly. And steroids will probably increase your anxiety, so perhaps it is indeed best to avoid them. I hope that the pentasa gives you adequate relief, but it might take a while (more than one week).
Posted 4/10/2012 10:49 PM (GMT 0)
Thanks MoobyDoo. I'm trying to be positive. It's just bigger than I am right now and I'm really scared. Any idea when I'll get a handle on this? I know this stress is making it worse but it's overwhelming right now.. Sorry for moaning.
Posted 4/10/2012 11:00 PM (GMT 0)
We talked about the pill camera but he felt it to be duplicaftion. You are right-no inflammation from the scopes or the barium swallow or contrast -CT. Now all I can do is wait and do my best to keep going and trying to be positive.
Posted 4/10/2012 11:23 PM (GMT 0)
Many veterans of this disease have found thru experience that there are foods that are best avoided, no matter how many meds they are taking. The usual suspects are gluten (wheat and barley) and dairy but they could be anything. In my individual case I need to avoid kale, shellfish, and carrots among other things. The only way I know to determine what works for you is trial and error. Here is an excellent discussing a gluten-free diet:
www.healingwell.com/community/default.aspx?f=17&m=2367300

Many here have found rectal meds such as mesalamine enemas to be very effective. As far as supplements go IMO you cannot take too many probiotics.

I have never found need for it (yet) but there are some here who have found LDN to be very effective for Crohn's and other autoimmune diseases such as MS. It is very inexpensive with supposedly few side effects. I am sure someone will soon bring it up. BeeSting suffers from Crohn's and LDN is her only medication.
Posted 4/11/2012 12:14 AM (GMT 0)
It seems I have a lot to research and learn. Maybe knowing more will ease the fear and stress. Will try to start tomorrow.
Posted 4/11/2012 12:32 AM (GMT 0)
Lady sapphire,

Welcome to the forum.

I am sorry for your recent diagnosis. It's not one anyone wants to get.

And yes, it is very much a grieving process.

When I first  got diagnosed it took me a good 6 months to accept it. I was so angry with the world, felt I was being punished. What had I done to deserve this?

I agree with your doctor about the counseling. I think it could make handling the shock of this dreaded disease easier on you. It's too bad no doctor suggested to me.

I do believe that the more information you have on CD, treatments, and all its ramifications, the more empowered you will feel, and it will get to the point where you will see yourself in a more positive light, i.e. you have crohns rather than crohns has you.

I would like to share with you some things which have helped me greatly: diet, supplements, LDN among others, in the hopes that they might help you too.

Here's what's worked for me:

1) Diet is key for me: I do the Paleo diet, and I am very, very careful with food combining, because if you mis-combine it creates havoc! Here's some info on it: http://cureforulcerativecolitis.com/step-1-methodology-to-eating

2) Adding L-Glutamine powder 5 grams - for colonic repair. If you're having issues with urgency and diarrhea, then you'll need to take L-Glutamine powder 1 teaspoon mixed in a little water on an empty stomach, and that should alleviate your symptoms alot.

3) Adding slippery elm bark powder - 1 tablespoon mixed in a little water, 3-4 times a day - IMO it is the equivalent in nature to the 5asa's and works much more effectively than all the mesalamines without the side effects.

4) Probiotics are key. If you can get your doc to write you a prescription for VSL#3 DS - that would be better, stronger, and probably cheaper ( IMO 3 x per day at least) than buying VSL#3.

5) Drink lots of good water.

6) Get your vit. d and b12 blood work done, to see if you are deficient.

7) SCD diet - specific carbohydrate diet - many have had lots of success with it. If you can't do it because it's so strict, at the very least do dairy free, wheat free, gluten free. Personally, however I prefer the Paleo diet, because it is an anti-inflammatory diet - mostly veggies, salads,nuts, fish, lots of GRASS-fed animal products like lamb, beef, bison, and eggs, no grains at all. The whole basis of the diet is to concentrate on foods rich in healthy ratio of omega 3 to omega 6, which is ideally 1:1. Grain-fed animal products contain unhealthy ratio of 1:20 which causes and contributes to inflammation in the body, and therefore disease. Also grass-fed animal products contain important CLA, which you cannot get from any other source.

8) start a food journal and see what correlations come forth

9) There's a great app for keeping track of your symptoms, diet, meds, etc...

http://wellapps.com/products

10) Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

11) Adding rectal meds. Are you on any rectal meds like canasa suppositories or rowesa enemas?

12) You may want to add liquid vitamins/minerals to make sure your stomach does not have to do the work of breaking them down, and hence not absorbing them.

13) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig).

14) Astaxanthin is a great anti-inflammatory

 

 

I think the more information you can have on CD and all its issues, the better you'll feel, albeit after you get over the feelings of being overwhelmed by it all (i know, :()

I now it's all pretty overwhelming right now. Just take a deep breath and take it one day at a time.

Let us know how we can help you.


Posted 4/11/2012 12:32 AM (GMT 0)
Honestly Lady S, I think your doctors aren't treating you right. Crohn's needs to be diagnosed by biopsy. One of my friends has done all the dangerous medications for crohn's & they diagnosed her just off of a pill cam & blood tests. Now the doctors don't even think she has Crohn's so she might have wasted ALL that money on medication that could be damaging her body because she may not even have Crohn's.

You can't diagnose Crohn's through stool samples or blood tests. Colonoscopy & EGD are the gold standard. Even when your doctor sees ulcers/inflammation via pill cam they should take biopsies to make sure it is Crohn's.

I know soo many beautiful women & handsome guys with Crohn's and most of them are in a relationship with other very attractive people. Beauty is only skin deep & if someone doesn't love you because you have Crohn's then they aren't worth keeping! I can honestly say, I've never met an unattractive Crohnie. I don't mean that in a shallow way it's just in my experiance of meeting other Crohnies most of them are beautiful & have great personalities because of their disease! Heck, dating a Crohnie would be my dream :)!
Posted 4/11/2012 12:47 AM (GMT 0)
InSoFla
Thank you so much for your very constructive ideas. I'll print them off and go over them carefully. This gives me a good direction to start learning. Education always helps.
Posted 4/11/2012 12:54 AM (GMT 0)
Keepingfaith,
It would be lovely to feel beautiful again. I am concerned about personality change. How long does the anger, fear and resentment last? How strong is their influence on personalty?
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