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Crohn's Disease Forum » Your Story » Control-freak out of control


03-20-2014, 04:25 AM   #1
Pusheen
 
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Control-freak out of control

control-freak out of control, that is what I am, and a workaholic as well.
I guess things need to change now.

I was diagnosed with Crohns on Monday, so have just started the roller-coaster ride I guess.

I'm an old newcomer for Crohns, as I have understood most people to be diagnosed before 25, and I'm 41.
But my tummy has been difficult for years. IBS was mentioned in my medical files in 1994 or 95, and the last few years I have had more and more bowel problems, which have mostly been put down to stress.

In the last couple of years I have had both Uveit in both eyes and erythema nodosum on my leg.

In the last year I felt like I was getting more and more intolerant to food groups and in the end I just ate what I liked as my tummy would disapprove anyway.
In December I notices my stools to become orange and slimy, and at the end of January I started throwing up, mostly while sitting on the toilet, quite a challenge that one.

I went to the doctors about a month ago, as the throwing up bit and going so often to the toilet was getting annoying, and as I was on the waiting list for big knee surgery, I couldn't see myself on crutches running to the little room and cleaning up after myself. My bloodworks already indicated trouble for the knee operation (hightened CRP and ESR) and the stool tests indicated blood and >6000 calprotectin, after that a coloscopy was organised pretty fast. (Normal waiting time 16 weeks, I got in within 2 weeks)

Now instead of a planned knee operation this week, I was given Crohns. Not what I wanted nor expected.
I have had more than a year of waiting for the knee operation, and not being able to plan my life, because of not being able to walk far and knowing that I would have a three months rehabilitation after the operation, that would put me out of action.

The good thing is, that I can actually be sick now, and allow myself to take rest.
My body has been screaming at me for months to take it easier, and I just waved it away as mostly stress signs..
I need to learn to listen to my body.. but it makes me feel like a hypochondriac, I need to find a balance.

I have been given 30 mg prednisolon and 2 gm pentasa after they found active Crohns in big parts of the Colon and the whole rectum.

The prednisolon has kept me awake for most of three nights and I am completely hyper, while my body is exhausted, and my brain reacting with it's normal depressed reaction to Prednisolon. More people getting all awake and hyper with these meds?

I am waiting for referral to the nearest hospital for further treatment.

I am fortunate with a supportive husband, but he is quite angry at the moment that I have pushed my body this far (again)...

The not knowing what will happen now? Will the meds help? When will life return to normal? is very hard on this control-freak... Time will tell I guess..
03-20-2014, 04:54 AM   #2
valleysangel92
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Hello, welcome to the forum

Im sorry to hear of what you have been dealing with, but I'm really glad you've found us, this forum is full of supportive, helpful people who understand what this disease can do.

I can totally understand the feeling of losing control, that's something many of us deal with, especially when we are first diagnosed. Crohns is a tricky and sneaky disease, it can creep up on us and certainly keep us on our toes, but it can be controlled, it can be managed, you can gain remission and you can continue with a next to normal life. It just takes time to work out which medication(s) are right for you and what dosage you need to use.

It is good that you are now taking the rest your body clearly needs, being sick can be exhausting, so resting is very important. Many people find they have trouble sleeping while taking prednisolone, sometimes this is helped by taking it first thing in the morning with breakfast. Others find that when they start to taper (lower the dose) the side effects reduce. You must not try to lower the dose on your own though, you may not yet be ready for a lower dose, and steroids need to be lowered carefully under medical supervision.

I've also seen many people report feeling hyper and like they have a lot of energy on pred, and pred induced depression is also common. For most people, this will ease when the dose is lowered.

Its good to see that your husband is supportive. Having someone to lean on can be very important.

Those are questions that everyone has, they are natural and nothing to be ashamed of. I can't tell you when, but I can tell you that you will start to feel better, it just takes patience to find the appropriate treatment.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
03-24-2014, 02:27 PM   #3
Pusheen
 
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It's now a week after starting treatment. Was on 30 mg prednisolon and tapering 5 mg first two weeks and 2,5 after that.
Side effects of not sleeping, being hyper and very sensitive (lots of crying) and unconcentrated behaviour and vision problems (slow focus and auro round light) are very present.
Effects less than I would have like to see: Stools have been better, no seen blood (not much of that before either) less mucos, but still there. But the pain and the need to go to the toilet haven't diminished. Not throwing up, but still feeling sick and tired.

This weekend I got the letter from the hospital, transferred to another city (15min nearer) but 8 weeks before next appointment, which to me seems really really long. As well as little supervision while using prednison.

But then I am a newbie in all this, so should I presume this is normal? I don't know.

My husband is worried about me, sometimes I feel he is right, but I want to do so much more than this.
But then today my colleague/boss came to visit and after an hour I wanted her really gone, as it took too much to concentrate on her for that long..

Most given reply from people around me: "I presume you will be on a diet from now on..." didn't expect that one.
03-24-2014, 02:40 PM   #4
valleysangel92
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The side effects you describe are pretty common unfortunately. Although steroids can have some effect immediately, it is not uncommon for some symptoms to remain for a little while or even until starting a maintenance medication. Sometimes a higher does is needed for a slightly longer period.

I am not familiar with the health system where you are, but here in the UK an 8 week wait for a new hospital would be considered good, I've waited 6 months plus in the past.

It is natural for your husband to be worried, he obviously cares about you and wants to make sure your okay. Listen to your body, you need to take it easy for now.

Other people can be really shocking at times, it's hard for them to understand what this disease is like, although that does not make their attitude acceptable. Try to let it go over your head, stress and crohns are not a good mixture.
03-25-2014, 12:27 PM   #5
Pusheen
 
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The wait is not for a new hospital, the wait is for treatment. I've only been given a started dose on the prednisolon, and no controls whatsoever... But have requested to stay at the first hospital today. Since I have two other active specialists there (dermatology and orthopedics, with an operation waiting on the last one). The welcome on the phone between the two hospitals was a world apart, so I can now relax with the waiting for an appointment, whether it takes longer or shorter, I can at least phone if I have major questions.

I have an appointment with my GP to discuss sick leave on Monday, and I presume she can answer some of my other questions.

Today was a lovely sunny day, so we went to a nearby beach (living on the fjord has it advantages) and enjoyed the sun and the waves in an almost windfree spot, together with the afternoon nap, my day has been good!

I downloaded an app called GI monitor on my mobile, there I can register lots of things, gives me a feeling of being able to review my days a bit better, and write down things that are important. So I can see in a weeks time whether things have changed, or that my feelings are deluding me.

Valleysangel, thank you for your patient answers! you have been in this game a lot longer and seem to have good knowledge of things!
03-25-2014, 12:38 PM   #6
valleysangel92
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You said though that you are being sent to a different hospital? Here that would mean that you would wait longer for the appointement than if you'd been going back to the same one, which is what i meant.

To be honest, even when I was under a GI, I was lucky to get an appointment within 6-8 weeks, so while I know waiting is frustrating, I promise you aren't alone. If you need to vent then feel free, we all get it.

Sometimes we have to wait because the specialists are trying to come up with a treatment plan in between appointments, so that when we get to them, they have the answers we need ready and can get treatment started as soon as possible.

I'm glad that you have managed to enjoy the sunshine little things like that can make such a big difference to morale.

The app sounds like a good idea, personally I'm terrible at remembering to fill things like that in, so I keep a note pad at the side of my bed. We are all different in that respect so I'm glad you've found something that seems to work for you

you are very welcome, I hope you continue to find the forum helpful
03-29-2014, 09:41 AM   #7
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valleysangel92, not all hospitals have opportunities for all tests. So you get tested in the one hospital with a diagnoses and treatment is taken over in a nearer hospital.
When I was diagnosed the specialist promised an appointment within 5 weeks. So 8 weeks was a bit of a disappointment. That pluss a lot of wrong dates in their letter to me, made me very irritated.
But well, things got turned around, I was set up for further treatment at the same hospital as I was diagnosed and have an appointment 2. week of april now. As I have two other specialists that I see regularly at that hospital, I don't mind driving a bit further.

Otherwise still very sensitive and down, and tired.. Blood in stools again, hoping it is just a little blib on the radar and not more..
03-29-2014, 10:24 AM   #8
lbligh
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Pusheen, I'm so sorry you had such a bad time. It certainly must be "annoying" to be experiencing diarrhea and vomiting at the same moment, and then to have the doctors imply that it was all in your head!

It does sound very callous for people to remark in passing that you will have to be on a special diet now. As if the wretched condition your guts are in, can be fixed that easily. Given that you have to wait weeks for additional diagnoses and treatment options, though, I'd urge you to consider trying the Specific Carbohydrate Diet. It might help a lot, you'll know in less than a month if it will work for you, and at least it would give you the feeling that you were doing something other than just waiting.

Please humor me and read on, even though I know I am sounding like a total diet weirdo.

I am going to cut-and-paste this from something I just wrote in another thread.

We had spectacular results for my daughter (age 13) with the Specific Carbohydrate Diet, after attempting a more general low residue diet for several months.

We had previously been avoiding the things that "everyone says" you should not have with Crohn's, and also selectively eliminated any foods that seemed to disagree with her. After a while it seemed as if there was hardly anything she could eat. She was miserable, and still had stomach aches and fever every day, despite taking Prednisone, which we were unsuccessful at tapering.

It was desperation that brought us to SCD, which hadn't seemed to make any sense to us. Honey is OK, but not sugar? Huh? (Eventually, though, we learned the science behind it, which is very sound. I'll get to that.)

Because her diet had been so restricted before, SCD was incredibly easy and seemed positively luxurious. Wow, she could have shrimp and beef and salad again? More to the point, in a matter of days it brought about a complete turnaround of her condition. No more stomach aches, no more fevers. At all. Period. After two weeks, the blood work showed all the inflammatory markers to be back to normal, in fact LOW normal. Prednisone is down to 5 mg and we are still tapering without difficulty.

Now we fully understand why the people online who write about SCD, sound a bit like wacky cult people. We are absolutely true believers now. A disease that the doctors wanted to treat with chemotherapy drugs, and called incurable, helped to this extent by making a dietary change? Wow!

My husband recently wrote a review of Elaine Gottshall's book, "Breaking the Vicious Cycle," on Amazon. I thought it was a good summary and will take the liberty of reproducing some of it here:

"I'm a scientist, I work in health services research, I understand the potential for mistaking spontaneous remission for the effect of a treatment. But this change was so abrupt and so clear, against an extended history of no definite effect of any treatment, that I'm convinced. This diet worked, for my daughter, full stop.

That said, I'll offer some advice. We looked at and dismissed the SCD early on in my daughter's disease. And it's largely because parts of this book are confusing and unclear -- until you understand enough of the underlying science. And parts are unclear because the legal/illegal list in the book does not clearly distinguish foods that you can try, once the gut has healed (e.g., beans, which are in fact a starchy food). And these apparent inconsistencies are highlighted by critics in mainstream health care.

If you want some understanding of the science behind this, you should Google up this article: "The Link between Ankylosing Spondylitis, Crohn's Disease, Klebsiella, and Starch Consumption". The gist is "molecular mimicry". That bacterium (Klebsiella) has antigens that are so close in structure to some human proteins that, in some people, when your body produces antibodies to kill Klebsiella, those antibodies cross-react with normal human tissue, resulting in autoimmune disease. A low-starch diet results in a 40-fold reduction in Klebsiella in the gut. Fewer bacteria --> fewer antibodies --> reduced autoimmune symptoms. Simple as that. A low-starch diet was proven to be effective in reducing symptoms of ankylosing spondylitis (rheumatoid arthritis of the spine) in the mid 1990s. It should be absolutely no surprise that it is effective in reducing symptoms of Crohn's disease in some people. I'm not sure whether Amazon will allow the link, but this article shows 7 out of 7 pediatric cases treated with SCD achieved drug-free remission within 3 months. [EDIT: Nope. Google "Nutritional therapy in pediatric Crohn disease: the specific carbohydrate diet" to see the research.] That's a small sample and so on, but if you've got a kid with Crohn's, you have probably already figured out that nothing in mainstream health care can come even close that that level of success.

So the diet is hard, but chemo is harder. We had the choice, we chose the diet. A few things make this diet a lot easier. Gwaltney sugar-free bacon. And pure dextrose (glucose) provides an easy-to-use occasional substitute for granulated cane sugar, available on Amazon, of course: http://www.amazon.com/Now-Foods-Dext.../dp/B002JNM8YM

EDIT: One paragraph about implementing the diet. We had no success with any of the "substitute" foods, e.g., bread made with nut flour. They tasted so little like the real thing that they just upset everybody. My advice is, just eat the real foods that are allowed on the diet. Fruits, vegetables, nuts, aged cheeses, homemade yogurt, meat, simple sugars. We eat lots of fruit. The legal/illegal list in the book is poor, and you are better off consulting the website with the same name as the book. A lot of the advice targets individuals with severe diarrhea and if that's not your issue you can just skip all that. There are far more "legal" packaged foods now than when that book was written, likely in response to the popularity of the Paleo diet. Every one of those helps. For example, one type of Trader Joe's mayonnaise appears legal (Trader Joe's is committed to absolutely accurate ingredient lists). Our typical day is: Breakfast: Omelet with veg and cheese, two kinds of fruit, sugar-free bacon. School lunch: Lettuce wrap, bag of pistachios, cup of fruit, homemade macaroons, fruit juice, SDC-legal Larabar (sold on Amazon). Dinner: Fish, two types of steamed vegetable, at least one fruit, custard made with coconut milk. Once you get adjusted, it's no hardship. But my wife is an outstanding cook, and that has been key. I pitch in where I can. The hard part is making the transition to the new diet. If it's too tough, cheat a little before you give up. There's a lot of evidence to suggest that there is a dose-response relationship, and low-starch diet will provide some benefit. Just not as much as the full SCD. And the book itself tells you, if you don't see results in a month (page 68, 3rd paragraph), this isn't going to work for you, and you can stop.

If you find yourself in the situation we were in, I can only urge you to try the SCD sooner rather than later. In my opinion, mainstream health care critics of the diet simply misunderstand some of the more ambiguously written parts of the book. The science behind this is good, and while it won't help everybody, it helps some people, and it definitely helped us."

Good luck, and I hope you feel better soon.
03-29-2014, 11:18 AM   #9
Pusheen
 
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ibligh, thank you for that, I have been on a "normal" lowcarb diet for a while and my body responded really well to regular bloodsugars, but about a year ago I started to respond negatively to many of the main ingredients, like soy, nuts (almonds, walnuts, pecan), eggs, sugar substitutes and cheese.
It might have been a coincidence or simply the start of Crohns in connection with medication I was on, but I am afraid to try again to be honest.
Then again, stopping the lowcarb diet and going on to highcarbs again, might have been part of the trigger as well.

I'm wondering if the food intolerance tests on the market are any good in giving guidelines. And whether they could be taken now, or I should wait until the crohns is a bit more under control.
04-08-2014, 12:33 PM   #10
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Visit to the GI today, he was kind enough to plan me in at short warning, so very very grateful.

Because of high inflammation, and a relapse after prednison taper I've now been put on Humira, had a course in how to inject with a pen, and that is something I can manage!
I got the choice between Humira and Remicade, but distance from the hospital made me choose humira with injections instead of remicade on infusion.

Next month I might get Imurel as well, but because of side effects they wanted humira in first.

new appointment in May.
04-10-2014, 09:10 AM   #11
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I ordered a book on specific carbohydrate diet, to find out a bit more about that way of eating. Looking into fodmap as well, reading first.

I had an appointment with my psychologist today, first time after diagnosis. It was good to be able to talk things through and get some space in my mind.
I'l probably be on sick leave for a while, I hope I can use that time to turn around some things in my life and find out how to continue from here.
04-16-2014, 02:06 AM   #12
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Had a couple of really tough days.
Probably side effects from medication. terrible shaky hands, and complete over-sensitive with sounds, vision and touch. painful neck, shoulders, teeth and jaw.
But today I seem to be a bit better, still shaky, but not as bad as the last three days.

but at the same time I think the medication is starting to work, much less mucous en no visible blood. Still painful rectum, and pain at some specific spots in the colon, but less intrusive.

I am trying to get to terms with having Crohns, but it feels like I have an angry wolf in my abdomen, which is growling, and we are trying to shoot him with huge bombs which seem to destroy so much, but hardly touching the wolf.
Just hoping the meds will kick in properly soon!
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