Wife has Crohn's

I think her disease is not being managed well, which is why she is tired and depressed. Also, she should have her vitamin D levels checked, and her iron. These are often low in people with Crohn's and insufficiencies of these minerals can make you feel lousy.

Where is your wife's inflammation? How long has it been since her diagnosis?

I think that excercise is out of the relm of anything I could do when I wasnt in remission. In a flare your body is working so hard to just exist. More sleep, not getting up early would be what Id suggest. walking is a good gentle bowel moving exercise...

The best thing you can do is feed her healing foods and try to encourage her to pursue getting her mind and gut well, the rest will follow.

I, personally, have never found juice to be good for me. Especially ones that are made with high sugar fruits and vegetables and I had to drastically revisit what was "healthy" food for me. A lot of things that people tell you are healthy are absolutely not for me. Whole wheat bread? Id be in the bed for a week at this point if I ate gluten with bowels that basically just refuse to work without enemas and alot of stimulant and osmotic laxatives. I think diet comes first, maybe see if she can work on her triggers... have you looked at the SCD, GAPS, Low FODMAPs or Paleo diets? It is so helpful when the whole family will go on those together. As a woman it was incredibly hard to even let myself acknowledge my triggers because I felt like I was robbing my family of all the foods they love. But when Im sick its too much to make my ownself meals, much less to cater to everyone else. When my husband finally made this issue a house hold problem, that is when my experience with this disease started changing. For me, that meant no sugar, soy, dairy or gluten. In the beginning I had to cut grains to to try to get SIBO under control. If I went kinda gluten or dairy free it didnt work. it had to be 100% adherence to see the improvements that motivated me to stick with it. The first 10 days were the hardest and Im so thankful my whole family did it with me. His support, and alot of that time it means telling me to lay down, telling me to rest, it helps me feel cared for. I can rest, regroup and heal. Or sometimes I can even wallow and cry and feel sorry for myself so I can get up the next day and get on with it.

Knowing my partner has my back, the house wont fall apart, someone will feed me meals that are good for me when Im sick... those are the best ways he helped me heal. He knows I cant boot strap my way out of this. That's a hard pill for my to swallow myself, being a complete type A.

Chronic disease sucks. And coming from someone who has Crohn's with constipation, yes, that can be a symptom. I often wonder if we are dual dx folks and should really have a UC and Chrohn's DX.

I hope your wife finds something that can start unlocking her pain. The nausea and no d makes me wonder about strictures. I hate it when my intestines get inflammed and cause partial or full obstructions. I hate that feeling of nausea. Its like a burning one, deep inside that never goes away even when I sleep. Can you imagine exercising while wanting to throw up? its not fun.

Thank you for your reply, PathogenKiller. Can you tell me what kinds of foods you eat that made you feel better? Let me know and I'll do it.

Dave, everyone is so individual. What I react to she might not.. but lots of people have success with the Specific Carbohydrate Diet (SCD), Low FODMAPs http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=5&ved=0CFMQFjAE&url=http%3A%2F%2Fwww.ibsgroup.org%2Fbrochures%2Ffodmap-intolerances.pdf&ei=5PIHUfTBGqj4igKJkIC4Aw&usg=AFQjCNEModlBGv9hZM3Syo7igqozxDraHw&bvm=bv.41642243,d.cGE&cad=rja or the Paleo Diet.

In the beginning I reacted to everything and had success on both the FODMAPs and Intro SCD with no dairy, grains, fruit or sugar. Now I can eat grains in moderation, sugar put me closer to a flare then I would have liked to go, but I have been tolerating fruits. Im 8 months in to strict diet adherence except for the week of christmas to the new year where I had a short fling with coconut sugar and honey ;).. and 1 glass of wine on 2 seperate occasions. I was doing better then I ever had in my life before that. Im frustrated that Im not more healed by now.. but wanna kick myself in the butt because those paleo cookies and the wine were so not worth teetering at the edge of obstructive constipation. The inflammatory triggers are complex. Basically when you have this disease your immune system has been playing whack a mole for so long with the particles that you were getting in your blood stream with leaky gut, who knows what you react to and what bacteria you have cultivated and what they like to eat. For instance, I couldnt eat any corn products. Not allergic to them. But if i ate some corn chips or a piece of gf cornbread Id get horrible sulfur smelling burps and constipation.. more gas, more burps.. then finally pain.. Im pretty sure it was due to a bacterial imbalance.. after my parasite cleanse i could tolerate grains(except gluten) again with no adverse reactions.

Anyway, chicken soup with no noodles or rice or pieces of onions, potato skins or carrots unless very very soft, roasted chicken.. squashes.. FODMAPs was really my most successfull to get it all under control, but it is SO restrictive. So hard to adhere to, but it got me out of a flare the doctors just kept making worse and I weaned from everything at the same time.. so it was worth it. Paleo is fun for people because of crossfit and the whole following it has. It makes it easy for people to adhere to it. SCD is in the middle, other then the dairy, it is basically the FODMaps diet with more high fiber veggies added in. I cant do dairy, it doesnt hit me immediately anymore, but when I try to make SCD dairy Ill flare after a bit. I tried SCD for 2 years before the docs gave me the official Crohn's DX, it totally slowed down the progression of my disease, but seemed to move my issues more colonic.. or maybe that was just a coincidence. I do know via stool testing that I was never able to repopulate my gut flora when I would eat dairy no matter how many trillions of probiotics I was eating. My lacto and bifidobacteria always stayed low and the supposedly friendly E.Coli stays sky high.

Anyway, my point is that I feel like its really worthwhile to change your diet. Only your wife can tune into her body and see what works.. start with a frame work tho of one of the diets mentioned because its hard when you start shooting in the dark while healing. That can lead to Orthorexia because you dont know what the hell you are reacting to and everything hurts so you just stop wanting to eat anything.

Yes, she has had a CT scan. If I recall it was the ileum that was swollen.

She had her appendix removed when she was about 18, and would complain about pain there sometimes (years later).

By surgery, do you mean remove part of the colon? Wouldn't that require a colostomy bag??

Wait....so she has it in the worst possible place? I'm starting to get worried. Is there a good-sized risk that she will need surgery???

Aren't there advances in stem cell research that will help get rid of Crohn's once and for all?

Will resection result in the removal of Crohn's?

What are the usual outcomes of surgery?

Resection often gives people a good long remission, but there is no cure for Crohn's.

If you can get into a good remission and maintain it with meds and diet, then you are essentially disease free. But crap happens and sometimes people flare. For example, life stresses can affect your gut and for a person with Crohn's this can lead to a flare. I've experienced little setbacks here and there from catching a virus - my regimen gets me healthy again pretty fast but I know that I will always have the risk of a Crohn's flare.

Pregnancy is hard to predict. It is best to get into remission before starting a pregnancy. Most DRs will say that pregnancy follows the "1/3 rule." 1/3 of people get better, 1/3 get worse and 1/3 see no change. My personal experience was that I had good remission in pregnancy but flared following birth. In fact, my diagnosis came about after the birth of my first child. I think this is pretty common.

You can read about the meds we take and their safety during pregnancy and nursing at infantrisk.org.

I'm pregnant right now, and I flared a bit because I had morning sickness so bad (hyperemesis) and got too dehydrated. My neo-natologist (OB for high-risk patients) said that people tend to flare after giving birth, but during the pregnancy you are about the same state as going in (usually).

No matter what, flaring is bad for a pregnancy. It's probably not a good idea to go into a pregnancy while flaring. Especially since prednisone isn't the best for a pregnancy because it interferes with the baby's ability to make its own steroids.

I feel for the both of you, as you obviously want to overcome this obstacle but it seems so daunting to overcome.

Everyone else replying has given you great information.  There are different options available for treatment.  Medication, diet, homeopathic, etc.  These can and are often combined.  Discussing with your GI options available to you is essential.

There is currently no cure for Crohn's, including a re-section.  No matter what a person does for Crohn's, it can come back.  It is very much treatable but curable.  Many people live by a certain treatment and have been put into remission for the rest of their lives.  It's absolutely possible.  The same treatment, on the other hand, could have done nothing for another person.  Crohn's is a complete crapshoot.

You have a lot of questions.  Good for you.  A lot of new-comers don't think of asking the basics, for a variety of reasons.  Knowledge is power.  In this case, that statement cannot be more true.  The more you know about the disease, the medications, alternate therapies and diets the better off you are.  It is a HUGE difference.

Asking questions on here or other similar sources is excellent, as we can give you personal anecdotes and first-hand experiences that most doctors can't.  At the same time, you MUST ask your GI questions.  Anything logistical, technical or the like needs to go through him.  If, for whatever reason you cannot communicate properly with him (availability, personality, lack of knowledge), seriously consider finding a new GI.

I am certainly not the best un-professional authority on Crohn's and pregnancy, but I will have to agree that having a good handle on your Crohn's prior to becoming pregnant is very important.  I cannot imagine being both pregnant and dealing with out of control Crohn's at the same time.  All the same, as others have said, pregnancy has been known to induce remission.  However, I really believe that having good, solid control (both physically and mentally) over the disease is really the first step that needs to be taken.  By complicating a non-ideal situation with another intense possibly life-altering situation, you can only imagine something will somehow suffer.

That brings me to my next point. I am going to be completely blunt here.  You seem to be in a good frame of mind with the diagnosis.  How is your wife handling it?  Everybody handles a medical issue in a different way an everyone grieves.  It seems as if your wife might not be mentally dealing with it too well.  Again, this is coming from a complete unbiased observer based on what you have said in your posts. 

You've said yourself she's very depressed; yes, the depression could be due to medication, but my guess is it's real depression.  She doesn't want to take the vitamin D because she says it makes her nauseous; however, vitamin D does not cause indigestion problems.  Could she be having a problem getting around the fact that she needs to take medication?  So that she does not have to take the medication, she instead blames a problem on them.  I really am trying to be delicate here- it just honestly seems like she's having problems accepting/in denial with some depressed moods.

It is not bad to be depressed with a chronic disease such a Crohn's.  More often, it is actually the norm.  From what I have seen, approximately 75% of those with Crohn's/UC have depression.  I really want you to consider this and talk with your wife, as depression can be helped.  Discussing any emotional or mental problems with a professional would allow you to understand your options.  Treating depression doesn't mean going on medication.  Otten times, realizing you are depressed and talking about it is enough to get a person on the right path.

Not wanting to do the things one loves doing is typical of depression.  Exhaustion, change in routine and general tiredness/fatigue are also typical symptoms of depression.  Just like you said, the lack of interest in everything could definitely be medication.  But it also could be depression.  Please consider the possibility.

Have a frank conversation with a doctor you trust (hopefully your GI) about everything your wife is experiencing.  Discuss her moods and feelings and definitely talk about properly managing her Crohn's both in the long term and short term.

Depression isn't a reflection of a person.  It is an illness.  Just like Crohn's is an illness.

I really hope I explained a much as possible.  It seems your wife might need some extra love and support during this time.  I hope I did not come off as a mean bully.  I hope I gave you an outsider's perspective and that it may help both you and your wife.  We are here in any way we can provide support and keep asking questions.  Good luck on this journey.

 

Any thoughts on stopping with the Budesonide? She is really not doing well with it, mood-wise. Not well at all. But I'm worried because the Pentasa made her painfully bloated, and the doctor put her on Budesonide for a reason. I don't want her to have to get surgery anytime soon (not ever, if possible), so should she stick with the Budesonide (she's calmer today, but the past few days have been like she were on hardcore steroids or something. I stay cool because I know it's the medication, but still, that was something else, a bit disturbing). Not sure your all's thoughts/experiences?

Will she get more used to the Budesonide? She's been on it for a few months. I thought Budesonide was only a few-month-at-a-time drug? Also she has gained an unusual amount of weight since starting it, like over 10 lbs - 20 lbs in a few months - which she is really down about, even though she does not eat very much food at all. It's very strange, and worrying. The doctor said it's because she is feeling better and eating more. Her stomach is feeling a bit better, but she definitely isn't eating more, or feeling better otherwise...