New to CD, but already giving up

No, it will never go away. The damage this disease will cause to you, untreated, could range from malnutrition (leading to fatigue, osteoporosis) to perforated intestines, sepsis and death. Not really a desirable outcome.

Prednisone is not a solution. It is meant to be a short-term treatment to induce remission while you work on finding the right maintenance meds.

Where is your inflammation? What are your symptoms?

Welcome to healing well! I am sorry things are so rough right now. There are many medications to try and eventually you will find one that will work although it can be a balancing act between pharmaceuticals, herbal products, diet and exercise.

Some natural things I do since I have been through nearly every medication in the book...

Look into the SCD- it basically limits processed foods, carbs and sugars

Probiotics- I use Ultimate Critical Care from Whole Foods

SLippery elm, bee propolis, vitamin D3, fish oil

I eliminated all caffeine and only drink purified water or 100% pure OJ


I usually do a fast when I feel a flare coming coming on. Usually a day or so.

I hope you can find what works for you but dont give up. This is a great site to get tips and information from many people who have been through the ringer!

Take care!

But won't I eventually go into remission? My entire small intestines was really inflamed and symptoms is NOTHING will stay in me. Within minutes I'm in the bathroom. Tired? Yes but I'm the mom of twins of course I'm tired. Stomache aches really bad occasionally. about one a day.
I am also a vegetarian and I also have celiac so eliminating more food is kind of crazy to be honest. I am anemic and have recently had kidney stones ( don't know if pregnancy related or from CD)

From what I've read- people say go in a liquid diet or fast or eliminate certain food from your diet but everything is making me sick. I do not follow a gluten free diet as I went into remission with celiac (yes I know that is bad- & that damage is probally mounting up with celiac by itself)
I don't want to be on drugs or injections for the rest of my life, what sort of life is that? How do you guys actually cope.

sickma, it is hard to adjust to the idea that you have a chronic condition. And it sounds like you have two - celiac and Crohn's! It's a tough pill to swallow, sorry for the unfortunate pun. But cleanfreak is right - you have an important job to do and the first step on the journey of being a great mom is taking care of your own health. And sometimes that means accepting some difficult truths.

Some people with Crohn's do get injections or infusions (Humira, Remicade, others) periodically to manage their disease. In many cases, those drugs are miraculous and those people feel really great, with no restrictions on diet or anything. Other people, like me, choose a more "old fashioned" path and stick to the safe meds like Pentasa, which is effective in many cases, but not all. And Pentasa is not going to get you into remission most likely. Since you've already started with prednisone, it seems like you should be able to induce remission like that and then make a plan for your maintenance meds.

And sure, you can go on an elemental diet (liquid meals, called TPN - total parenteral nutrition), with a feeding tube and all. That is also an effective way to induce remission. But holy cow, how is that better than taking meds for someone with twin infants at home? And once you get off the elemental diet, you will still need to be on a maintenance program of some kind.

And yes, if you have celiac disease then a lot of your misery is probably due to eating gluten. Please stop. You will feel a whole lot better. I adopted a gluten free diet almost a year ago, even though I don't have celiac disease. It turns out that I am intolerant of gluten, and without it I am a much happier and healthier person. You will be too.

I know that having young babies at home is exhausting, and with twins I am sure that you feel you have absolutely no time to care for yourself. Get your s/o on the job. Make sure that you have the time you need to get healthy. Your kids will thank you for it.

I wish there was a "like" button on this site, NCOT. You have done a brilliant job with this post. Thanks. I hope sickma reads it. And gets it.

Sickmamaoftwocuties


i guess you and i both have 2 little ones. LoL



i've had stomach problems since i was a kid. i've always known there was something wrong with my stomach and it took a very long time, my brother getting sick and me having 2 kids for the doctors to finally agree and do something about it. I've always had the stomach problems but went to peditricians as a kid all said nothing. once i was 18-19 tried going to a doc. still no help. i went to them saying i lost weight and even fell and hit my head in the shower. the docs response was "are you eating?" Birth control made me loose weight and hurt me more than it helped.



When i had my first son (he is 36 months now) i complained the entire pregnancy that my stomach hurt and it was always normal. Except the girls i work with kept telling me thats not normal. after i had him i lost all of my baby weight + 5lbs in about a week. It was horrible even though i know a lot of people would like that. But to say you just had a baby and a week later you are 107lbs and 5-9 there is a problem. i was hoping to keep a few lbs.



My first son was only 9 months old when i found out i was pregnant again. we were very excited but the being pregnant i gained another 43lbs the exact amount i did the first time. Stomach pains were a little stonger this time but i managed and was told its normal once again. But after i had my second son my body really went crazy. and yes i lost it all again just as fast. i had extreme stomach pains in the hospital after that were worse than labor. again i was told was normal.



he is now 18 months old and i still haven't gotten any better. The beginning of last year i spent 6 months with the ARNP of my doctors office trying to figure it out when i kept telling her i know i have what my brother has. When the doctor seen me and fired her he sent me to the GI doc fast.



So for the entire time i continued to get worse, it was very slow. my energy went down hill to where i would wake up and want a nap an hour later. i could sleep 3 hours or 10 and feel the exact same way the next day. i only had stomach pains but by the time the doc finally sent me to the GI i had started having bathroom problems. the problems just continued. Joint pains started too. It really didn't just go away. but i had plenty of time that it could have.



So believe me for the last 18 months has been slowly getting worse. They say pregnancy can trigger a flare and believe me in my case it did and its still not under control. Go to the doctors and see what works for you. I'm starting the iv treatments tuesday so we will see if that works for me. The steriods worked pretty good for me but its not something to stay on long term, it just helps until they figure out what will work for you and then they will taper you off of them. When they slowly reduced the amount i had it messed me up too.



right now i'm on apriso 2 pills twice a day, vitamin b12 liquid drops (you can buy at the store), a multivitamin (one with iron & calcium are better), and i'm going to start the remicade tuesday. The doctor said if it works i will know after 2 times of going. He said if it works for me then i will feel so much better and i'm trying for my two boys. i tried the humira and it didn't work for me. But the humira is an injection that you can do at home, if you dont want to try the iv treatments. talk to the doc and see your options. (he also gave me samples of a probotic but its horrible tasting so i dont know if i can take that.)



My brother has crohn's and you would never know. he is getting remicade and having no problems. He feels great and does everything no problem. its weird to me how he looks and feel liek a normal 16 year old when he was told he has a severe case of it and i'm supposed to be the one with the mild case.




Please don't link user ids to their member profile. Not sure how it happened. Thanks!

Post Edited By Moderator (Roni) : 4/27/2012 9:48:05 AM (GMT-6)

Thanks, kazbern, for your comment up there >.>

How do I cope? In all ****ing honesty? Not very well. In a funny way, it didn't help me that I had so many years of mild disease that barely affected me. In fact, having suffered from bad constipation for a very large part of my life prior to Crohn's, inwardly I was anxious about getting rid of the diarrhoea in case the constipation came back. So although I didn't say this to any doctor obviously, I did not mind that the 5-ASAs didn't work and didn't press for more effective treatment. I also was not told anything about Crohn's, nor did I ask.

Even when I first fell ill, I did not immedicately connect it to the Crohn's. For years I was ill without necessarily being certain that it was down to the Crohn's. If that sounds weird, then bear in mind that a) the doctors at the time told me practically nothing; in fact I rarely saw any doctors and mainly spoke to IBD nurses instead; b) social anxiety inhibited me in describing my symptoms, so I did not give the full picture (still struggle with that, but I try...); c) I didn't know enough about Crohn's to know what was relevant and what wasn't. One example; I had high platelets. I was even sent to a haematologist because of it (who found nothing wrong). Wasn't 'til years later that I found out platelets are one of the measures of inflammation in Crohn's - my consultant actually keeps a record on my platelet count. What was even weirder than me not knowing that was the then hospital not knowing it! Wasn't like it was exactly a crap hospital for Crohn's either....

Anyway, I'm going off-topic. Long story short, I spent a few years being really quite ill without having much of a clue why. And, in hindsight, it really does seem to have all been down to the Crohn's as best I can tell.

It wasn't until 2-3 years ago that I began finally to research Crohn's in earnest. I became hypochondriac for a while, imagining all sorts of things which didn't apply to me and blithely ignoring the things which did. Then came the rage that I had this crappy disease at all. That lasted about two years. I rage-quit the last hospital in 2010. Tried ignoring the Crohn's all over again. That really worked, not. Finally joined my current hospital last year, which, while not perfect, does have a consultant who has been miles better than any previous consultant I've had.

However, too little, too late, and all that. Whenever I think of my disease now, a resigned despair overwhelms me, if I'm truly honest. Sometimes I feel like such a hypocrite lecturing others on what to do and nobody could have mismanaged things more badly than me for over a decade. Kazbern's is the example to follow; not mine. I was, and probably still am, an idiot.

Tea, you are spot on friend. I'm not sure why some crohns patients have such an aversion to drugs - I'm a poster child for better living through chemistry!! I've been on many drugs - currently injecting myself with 400mg of cimzia every two weeks and it's working like a charm. Have finally got a handle on my RA symptoms - crohns has been in remission since my last surgery in 2006. I don't understand why people chose to live in abject misery with this disease rather than have surgery or take one of the high-powered drugs but that's certainly their decision.

Roni,

What exactly does this mean:

Please don't link user ids to their member profile. Not sure how it happened. Thanks!

Dude: it's certainly a personal decision. You obviously know people who have gone spontaneously into remission - I was diagnosed 35 years ago; my doctor is with a large teaching hospital in Chicago with hundreds of patients. I have yet to run into anyone there or in my private life that has achieved that happy milestone w/o surgery or a med.

Thank you, bellajoi! I was feeling rather low after reading and replying in the thread where the topic creator was terrified of having a bag. Your words have cheered me up a tad! I'm not an optimist by nature and I have far too much time alone to think and brood about things - especially in the evenings, where I am also ground down by fatigue, ever-present abdominal discomfort or pain, anxiety and depression. The mental aspect is worse than the physical in many ways, but of course it's the physical problems which exacerbate the mental ones - vicious circle. >_>

At any rate, I can never be certain about it (unlike the ones who are so utterly certain that it was their special type of diet, or supplement which helped them), but I think my Crohn's needn't have got this bad. And that's why I advocate on this site for people to get treatment: especially the newly-diagnosed who are doubting their diagnosis. Yes, conventional meds can fail, but for most people something will work. To me, it's crazy to go down the alternative therapy route without at least trying all the main meds first, but there is so much idealistic promotion of 'natural' solutions, alongside attendant demonisation of the 'non-natural', that I cannot seriously blame anybody for getting confused and thinking that immunesuppressants and sugar are the spawn of a modern-day devil.

I should add that I'm far from implacably opposed to alternative treatments. Heck, I even considered trying LDN and hookworms myself <_<.

But people with new, active or severe disease should get it under control ASAP, imo. That will usually require drugs and possibly even surgery. Ultra strict diets and supplements can come later, if you are so minded.