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Posted 7/28/2008 7:57 PM (GMT 0)
Okay, so here it is. I've been in a severe flare for a year now and I'm desperately seeking treatments to help me get back into remission. My doctor recommends a colostomy but I would want to try all other possibilities before that because I;m going to be a college freshman in a month and socially I can't imagine a colostomy at this time. Also, I just registered at the Crohn's and Me website and have just watched all of the testimonials from other crohn's patients that are posted there and the tears will not stop coming. I think it's a mix of hearing that other people have had trouble with their doctors being merely "reactive" and not "proactive" and also hearing that I'm not the only one who has had countless episodes with embarrassing accidents and painful symptoms that make me feel almost sub-human. I think I'm am now reaching the point of depression and it's so hard for me to hear all the people on that site say what I have always had an instinct about, how food doesn't cause of cure the disease, but just helps or worsens the symptoms. And it's so gratifying yet upsetting to hear other people and doctors finally say that more than once when I have a mother who is a holistic nutrition counselor and everyday I have to hear how "I am the one creating this problem by what I eat" and how it's my fault I feel this way and it's all so easy to turn around if only I would eat only good whole natural things, but at the same time my doctors say that the roughage and high fiber foods are bad, and i can tell they always make it worse! The crohn's and me website actually has a woman who says that food only helps or worsens symptoms and that when she asked her doctor what to eat he said "the best diet for you would idealy be no food at all" which is so true. I just feel so helpless and criticized and I guess i don't really know where im going with this but i just can't stop crying and thinking about how my life is miserable everyday! i just had to quit my two jobs and am currently at home bed ridden everyday and just yesterday i drove to the store and had a bad accident in the car! will my life ever be normal! i only have one month til college! and im nervous that in a forced triple my roommates will hate and despise me, i just wish i never have to tell them but it's kind of obvious! ahhhh!
Posted 7/28/2008 8:03 PM (GMT 0)
also, sorry to rant but one more thing I feel horrible about is that fact that i've had a wonderful boyfriend for 2 1/2 years and i feel extremely guilty and not worthy of his love and support because we started dating and met when i was in remission and he's been through the roughest times with me but i feel i can't offer him what he deserves in a girlfriend because im usually/always lately feeling horrible and not able to go out and not able to be intimate at all it's really hard and i feel a tremendous amount of guilt. anyone else ever feel this way?
Posted 7/28/2008 8:17 PM (GMT 0)
Well first of all your mother the "holistic nutrition counselor" is simlpy full of holes. People do not give themselves autoimmune diseases, especially not by what they eat. So dump that part of the guilt right now.

Second you say your boyfriend has been with you for some time, which means through some flaring times, and he's still there. Something to be confident about perhaps?

As for starting college, I would be up front with the roommates. If any of them are offended, let them move . . . but I would bet you'll be pleasantly surprised. Most people are pretty accommodating and understanding about physical issues like Crohns, or being in wheelchair, or whatever.

Finally, if your symptoms continue to be as severe as you report with all meds exhausted, it may be that the ostomy is your best course. Something to consider anyway.

It's normal for folks with an annoying, debilitating and chronic illness to get down sometimes. So don't feel bad about sounding off or crying for a while.

Posted 7/28/2008 8:40 PM (GMT 0)
thanks it's nice to hear someone say that my mother rational is incorrect because it's hard when the people closest to you don't know how to give the right kind of support that i need. i think that greatly attributes to the feeling of helplessness i often get, like now. it's nice to hear from people on here when i feel i have no one to talk to. i really want to try and find a support group, does anyone know of any in maine?
Posted 7/28/2008 9:02 PM (GMT 0)
I'm seeing that you are a very brave young woman who is going through a horrible time with your health and have experienced some of the worst confidence deflators this disease can offer. First of all, you spoke of fear of problems at college, but not once did you say you wouldn't go -good for you!!!! Keep your dreams of college alive. I'm sure future roommates would be sympathetic to your problems.
Also, it sounds like your boyfriend really loves you - he's been though the worst of it with you and is still there for you (another big plus). I don't have personal experience with a colectomy, but from dating a man with one for a year (we split for unrelated issues - nothing to do with his health), I feel I have some insight into the issue. His crohn's was uncontrollable, and without the operation he coundn't function. He adapted to the change and felt so much better after the surgery. He could work and enjoy life again again and was able to keep out of the hospital for the most part.
I agree though that you should try to see if you'll have success on other meds - you are young and it is a huge decision for you. Perhaps you should ask your GI for a referral for a second opinion. Most doctors would have no problem with this -especially since you are such a complicated case in achieving remission.

Wishing you the best,

Bev
Posted 7/28/2008 9:38 PM (GMT 0)
thank you for the support, and i don't mean to seem difficult about the boyfriend thing but i just can't get it out of my head: I mean we've talked about it before and he says he doesn't want to leave me and he especially wouldn't because I have crohn's but at the same time all i can think is "what did he do to deserve having to deal with me" because my life seems to be very far from normality and kids our age should be going out and doing fun active things and more often than not we being so sick forces me, and in turn him if he wants to spend time with me, to be stuck in the house and doing very minimal things, none of which are very fun for a normal person... i just feel like he deserves better, but i love him and would never want to lose him, and i dont think he's going anywhere, i just feel bad that i cause his life to be the way it is lately, boring and inactive
Posted 7/28/2008 9:38 PM (GMT 0)
I don't think your mother has it quite right, but diet does play a role for many people here. The biggest thing that is cited is gluten - meaning all wheat, oats, rye, barley (and I think another one or two?) has to be avoided. This is not Celiac disease, or at least there is no positive response to any blood test or scope of the gut, but the trigger is the same. If you look at something like the Specific Carbohydrate diet, it starts with only clear chicken or beef broth and also allows any chicken (boiled, skinless) or eggs (also boiled or poached) and NO fiber for the first 2 to 5 days. People using the diet report having to stick to it for months before getting real results. The diet does not include any grains at all, even after remission. I think that you can cheat a bit on that - using rice for example - but gluten remains a problem, although some people report being able to eat regular bread once remission has been established. I found that wheat bran in cereal gave my gut fits, but I could eat white bread with only a little griping from down under (probably not a good idea to ignore the gripes).
Posted 7/28/2008 9:43 PM (GMT 0)
thanks so much that's helpful advice and she has mentioned the no gluten thing (but sometimes it's hard to distinguish her good advice and just angry rant). i really want to make an effort to change my life and disease through diet but aside from buying gluten-free food, which we have some of, the hardest part for me is knowing the specifics like if i pick up something to eat, how do i know if it's gluten or not. i understand no bread, cereal, oatmeal, and stuff like that, but is that the same with crackers and breaded foods like chicken and fish (breaded or fried) it's just gets confusing to me if i were to go out or something, it's just the ignorance on the topic, any advice about what to eat and what not to eat in terms of gluten?
Posted 7/28/2008 11:00 PM (GMT 0)
Hi and Welcome I follow low roughage white bread ,noo nuts, seeds ,peppers, corn, popcorn, turnip. easy to chew easy to digest foods .If you want some advice about low roughage talk to a dietician. You are lucky your boy friend loves you. I know sometimes we feel worthless with dealing with all our problems but when we start taking some kind of plan and with the good support and knowledge given here we build strength and a better tolerance for who we are. Where is your crohn's located? Although you might be a little upset with your Mom now she is right about one thing food can effect us but we need to have the food that is agreeable for us. Some people here are on B-12 as we seem to have a low B-12 level. Some take probiotics. Read the forms here and learn that is what helped me. Hope you feel more positve about your self ,your not alone.lol gail
Posted 7/28/2008 11:24 PM (GMT 0)
I just wanted to say welcome and good luck.... if you disagree with your doctor you have a right to a second opinion. I am older than you and I would fight a colostomy until the last possible resort! Don't feel guilty about your boyfriend, he loves you and will stick with you. Just think if he had gotten sick you probably would be there. Just count yourself lucky to have him and thank him for being there for you ((((HUGS)))) Karen
Posted 7/28/2008 11:25 PM (GMT 0)
I was diagnosed while in college. Thankfully my CD was mild then. Not so mild now. I have also had countless accidents in the car on the way to the grocery store, in the grocery store, in the mall, at the lake, in line in a public restroom, while asleep, in my own house that has 3 bathrooms, at work, in the ocean and I am sure many more places so please don't feel "sub-human". I bet your future roommates know someone with issues similar to yours. As I have gotten older and more vocal about all of my problems just about everyone I mention my CD to either has their own bowel trouble or someone close to them has bowel problems. My friends and I have hilarious conversations about what everyone's "poop" looks like. Please try to find humor whenever you can. It does help.
Posted 7/28/2008 11:56 PM (GMT 0)
haha thanks everyone. my crohn's is in my colon but mostly my sigmoid colon and rectum. i'm not a candidate for a ressection because of the location and the colostomy is the only real surgical option. and as for the B-12 thanks for the advice and i actually just starting taking supplements the other day of B-12. thank staci100 thanks for sharing with some personal stories because i know exactly what you are talking about that happens to me all the time in random places and it's sometimes hard to deal with but i guess we just have to until there's some other solution. thanks again
Posted 7/29/2008 1:27 AM (GMT 0)
I can relate. When I was diagnosed I told my fiance we did not have to get married. I felt so much guilt for making him deal with this. His response was "we should get married now, I have better health insurances". And he bought me a nice smelling candle for the bathroom.
You are blessed to have a boyfriend to support and care for you.

I know going to college is stressful, but I think you will find people are more understanding then we think. When people find out I have Crohn's they sometimes ask questions or which I have happen a lot, start telling me about their own stomach problems. You will be surprised by how many people have stomach problems. One thing I do that makes me more comfortable when I'm going to be out is sticking with what I call my "safe foods", food that do not make me go to the bathroom right away. For me it is baked, boneless, skinless chicken. I'm also on a gluten free diet which has helpped me a lot.
Posted 7/29/2008 2:25 AM (GMT 0)
Hey there, my daughter will be a freshman too this year. But living at home and going to CC College. She's very understanding having lived through this with me. It will be a good experience for your roommates. Think of it as educating them on the disease and what different people go through on a daily basis. I apologize if I sound offensive, but your mom isn't being considerate to what you are going through. She has no idea the pain you live through and should be much more considerate. Ruffage, high fiber set me off too. You are not alone, we all are in the same boat. Life goes on and you will eventually live happily ever after, in the meantime, lean on us for help, go to college and enjoy your freshman year. Relax, and don't stress about things, just live through the fun and adventure!!!
Posted 7/29/2008 2:29 AM (GMT 0)
If your boyfriend doesn't stick with you, then that isn't someone who you would really want to spend the rest of your life with.
If he is still with you through all this, then I bet it would be safe to say that he isn't going anywhere. When I had my first flare,
I was married to my first husband. I was so sick that he couldn't deal with it. He ended up cheating on me and I busted him.
But it was the best thing that ever happened because if I was so sick then at 26, what would happen if we stayed married and
I got to be in my 60's-70's and got ill with something. He wouldn't have been there then either. That's not someone I want to spend
the rest of my life with. I found a wonderful man who loves me for me, and is here for me through all my issues. I just flared in May
and still dealing with it and this the first flare my now husband has been through with me. He has been wonderful through it.
He has been super understanding when I wasn't well enough to be intimate.

I guess what I'm trying to say here is, I'm sure your boyfriend understands. Just talk to him and let him know how you feel and
find out how he feels. Communication is VERY important!! When I learn things about my Crohn's, I share it with my husband
so he can understand too. I share things that I learn from here, from my doctor, etc. He doesn't usually go to my doctor
appointments because of work but I tell him everything.
And like you, I went to college with my Crohn's too. My roommates totally understood. We became best of friends and even though
we live far away, we still to this day keep in touch over internet, phone, etc..

Try to think positive!!! :-)
Posted 7/29/2008 3:29 AM (GMT 0)
You don't happen to live in B-CS do you? If you do, you will know what the letters mean (near a very large university). Just today, a friend told me about someone she knows who is a nutritionist with a daughter leaving for college who has Crohn's. Is it just a coincidence?
Posted 7/29/2008 3:57 AM (GMT 0)
crohnspatient13
i am also your age AND I FEEL THE EXACT SAME WAY!!! ITS CRAZY!!!! lol except i have had a boyfriend for 7 years now...the one and only lol and i met him waaayyy before i was sick so we kinda went through this togther BUT i am also always depressed cuz we can never really go out and have a good time or even be intimate because i always feel like crap and on top of everything i have a v fistula which is disgusting! and i dont even want to talk about being "intimate" because we havnt in 2 years so i feel exactly the same way you do..
Posted 7/29/2008 4:42 AM (GMT 0)
Hi, CP13. Sorry you're having so many problems.

There are some good suggestions here, but I want to point out something: the dietary recommendations are all closely related, believe it or not, in that they recommend getting away from complex carbohydrates. Get rid of the gluten = get rid of the wheat, barley, rye, and oats.

I would strongly recommend you get a copy of "Breaking the Vicious Cycle," by Elaine Gottschall, or looking up SCD or "Breaking the Vicious Cycle" on the web. Many libraries will have a copy of the book, and there is plenty of information out there for free.

The net upshot is this: the disease has long been considered autoimmune. And, in fact, it may be- there may be several different types of Crohn's. Not everyone responds to the SCD- but for those that do (for the ones that can STICK to it as well- it's not an easy road), it can lead to marked improvement in function. I have been on it for 7 months; I am off all my meds, and my only problem is that my hematocrit is a bit low (the Crohn's Disease Activity Index wants it at 47, while mine is 44; anything below 40 is considered "low" for males of my age, so it's still fine). On a daily basis, I feel great. I do not offer this as a panacea: very few people respond as well as I have.

However, getting the complex carbohydrates out of your diet may improve your outlook markedly. Check my second post here for references:

https://www.healingwell.com/community/default.aspx?f=17&m=1149487

See also the Bartel paper:

Inflamm Bowel Dis. 2008 Mar;14(3):374-82.
Ingested matter affects intestinal lesions in Crohn's disease.
Bartel G, Weiss I, Turetschek K, Schima W, Püspök A, Waldhoer T, Gasche C.

In short, a diet of red meat and "sourdough" spelt bread (fermented to remove all of the complex carbohydrates- quite the opposite of modern, yeast-risen breads) put 4 out or 5 people on the diet into remission- MRI, endoscopy, and sonograms all showed they were markedly improved.

You will have to cut out sugars (no soda for you), no starches or breads (no birthday cake, no cookies, no bread sandwiches), no potatoes, no corn- no fun, in other words. But the results are tough to argue with. If you can, try the diet; improvement should take 1-3 weeks. It *may* be possible in *some* individuals to achieve a deep remission after 2-3 years on this diet. However, dramatic improvement may result in just a few months- it depends upon your ability to get on the diet, stick to it, and your personal biochemistry.

I wish you the best of luck in your pursuit of comfort.
Posted 7/29/2008 5:31 AM (GMT 0)
I forgot to mention the one thing that I found very helpful - taking a probiotic supplement. A number of lactobacillus and bifidobacter species have been shown to have anti-inflammatory effects and there is some suggestion that they may help to displace harmful bacteria. Two things to look for: an enteric coated capsule (the digestive juices destroy most of the bacteria otherwise) and no FOS (fructo-oligosaccherides or prebiotics). The FOS is a source of food for bacteria and you don't want to be feeding the ones in your gut that are causing all the trouble. This is only a soothing measure and will not do more than reduce the trouble if there is no other support for your gut. I too am one of the lucky ones that diet works for - possibly because I started before I even knew I had Crohn's so it never got so bad. On the other hand, I have a neighbor who has had it for 28 years and has had the resection and remission and then relapse who then went on to manage the problem with diet and supplements. If you go that route, you will have to do a lot of homework on what foods are OK and then you will need to learn to read your own gut and understand what it is telling you. In my case, I now know when there is a difference between a bit of gas and a virtually identical discomfort that is something that I ate that is kicking up trouble. Sometimes it takes a few repeats to be sure, but you have to pay attention to it and don't keep eating something that causes a reaction. Knowing the location of a hot spot helps identify the troublemakers.
Posted 7/29/2008 10:52 AM (GMT 0)
First off, I just want to say I'm so sorry for what you're going through..I was diagnosed my freshman year of college and met my boyfriend just months before everything started happening.
Some of my family also thought 'if only you eat/ate this or exercised this way' as well when I was one of the healthiest people I know.

Have you tried getting some good pain medication? And how is the humira working??? I understand your not wanting the colostomy bag at this point. I worry about it frequently, and I know you can get so depressed...I can't say too much else except that you have all of us here and many people going through the same thing so you will always have someone to talk to. Please, hang in there..I know it's so hard right now, but I know you can get through this. Just remember that YOU know better than the others in your life why Crohn's is the way that it is. It sounds like you've been very strong..keep going. You have a lot people behind you :)
Posted 7/29/2008 10:54 AM (GMT 0)
Oh, and as for the boyfriend situation on the whole, believe me I know how you feel!!

I even tried leaving for a while to give him a break from taking care of me, and he got so upset at the thought of being away he broke down...I know it's because he loves me and we need each other. I'm sure you and your boyfriend must be the same. Staying together is the best thing you can do I think...goodness knows we need those people who really do love and support us the way that they do. I don't know what I would have done all this time without him.
Posted 7/29/2008 9:14 PM (GMT 0)
It annoys me when people tell me to change my lifestyle (diet/exercise). I know they only mean well, but I hear it from every single person who ever offers me advice. Besides, they make it sound so easy. Oh yeah sure, I'll just completely change every single habit I've ever formed throughout my life in one day just because YOU suggested it! Thanks!
Posted 7/30/2008 12:08 AM (GMT 0)
I hate to be the one that suggests this, but is it possible that you're not well enough to go to uni yet? Leaving home is stressful and scary enough; I wonder if you've be better off spending next year focussing on your health and getting your Crohn's under control, and then heading to uni next year if you're better.

I really do feel for you, and I don't blame you for feeling anxious. I hope you're able to get some relief and stability soon.

I.
Posted 7/30/2008 3:52 AM (GMT 0)
Thanks everyone, and sorry I've been away visiting my boyfriends family last night and today (which i spent the entire day of between sleeping and the bathroom...), but anyway, i am really thankful for all of the support and all of the advice. I am taking it all into great consideration and I have been taking vitamins and am debating how I will go about starting to make drastic dietary changes.

I had some bad news today, it's more of a desperate situation now because my doctor called and said that the longer i wait for the colostomy the more damage is being done and the less control i will inevitably have over my bowels, great! so now the pressure is on and i'm wondering if there is any advice out there from people who have had the proceedure and how life with it has been, kind of the ins and outs because I really need to consider it. I think I'll post a separate topic on the matter just to get more response.
Posted 7/30/2008 7:55 AM (GMT 0)
CP13. well as you have read you got some advice on several things to try. some may work and others may not...

being 18, i would first like to ask you if you have seen more than 1 or 2 gastroenterologists. or at least one that has crohns experiance. i would ask you if you have seen a colorectal surgeon not just a general surgeon. i would ask why the rush? if like you were told "more "damage would be done and lose control of your bowels, if you have a colostomy that would be irrelavent anyway. my point being, hang on to all your parts as long as you can!

have you tried not just the prednisone but the cortisone enemas? to get the med directly into the rectum.
how about some mesalamine supositories? to do the same.
have you contacted a reasearch hospital like at a major unversity?
have you been to a mental health dr to help you through these trying times/

as for college, you dont have to tell anyone. it may make your relationships easier, but you dont have too.
telling the college medical people would be prudent.
i realise this whole episode in your life is overwhelming and depressing, but i would urge you to not rush to do anything as drastic as a collostomy without much further questioning of drs and more medical intervention. new medicines are coming, i wish i had some of these choices we have now 25 years ago.

your life is just beginning! please take it slow and thouroughly think things out for long term concequences...

truly hoping for you! randy
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