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Crohn's Disease Forum » Your Story » Newly Diagnosed with Crohns and Don't Know What to Expect


08-21-2014, 07:22 PM   #1
DiagnosedAndScared
 
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Newly Diagnosed with Crohns and Don't Know What to Expect

Hi Everyone...another newbie here. In June I had a burning pain that spread across my midsection outward from around my belly button and a fever, so my doctor sent me for a cat-scan suspecting pancreatis. Instead they found I had ileitis. She put me on heavy duty meds that caused a terrible bout of diarrhea and killed my appetite, and I felt sicker while taking the meds then before.

Fast forward two months and I'm feeling much better, although I still occasionally get a mild pain in the same area of my midsection...but nowhere near as strong as before. I finally got in to see a specialist (he had a long wait but was highly recommended) and he just did a colonoscopy. The colonscopy showed inflammation in my lower large intestine and in my ileum, but nothing else. He took a bunch of biopsies and scheduled me for a GI series, which I'm going to tomorrow.

In the meantime, the biopsies came back and confirmed the inflammation, and the biopsies of the ileum also showed granulomas, which he said are a pretty positive indicator of Crohn's. He wants me to start taking Pentasa, even though I feel as if I'm on the mend. I'm reading online that it's expensive and that insurance doesn't always cover it...

I was wondering if this is the normal route of diagnosis and treatment? Do they ever just wait and see if you have another attack?

At the time of the initial attack I was under a great deal of stress and my diet was not so good, but my doctor said diet has nothing to do with it. I am working hard to improve my diet (and it's nowhere near as bad as it was) and to lower my stress levels even though we are going thru some hard times right now, both financially and otherwise.

Thanks in advance for any advice or input.

Last edited by DiagnosedAndScared; 08-21-2014 at 07:38 PM.
08-21-2014, 07:37 PM   #2
DJW
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Hi and welcome.

Sorry to hear your diagnosis. Crohns can be very sneaky. Feeling pretty good with no symptoms but inflammation is causing damage. So treatment early can deal with the inflammation and reduce the risk of complications down the road.

Sending you my support.
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08-21-2014, 07:46 PM   #3
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I believe doctors do a huge disservice by denying the impact of diet. If you're interested in learning more about diet and IBD, check out Breaking the Vicious Cycle, SCD Lifestyle, and the diet-related threads on this forum.

I do not intend to say that diet necessarily replaces medication.Diagnosis followed by prescription medication is typical. Crohn's is considered a chronic illness, so it is generally believed that even when in remission, someone with Crohn's needs to be on a maintenance medication. Some people do manage their illness through diet alone, many (myself included) use both diet and medication to stay healthy.

I don't really have a response to the issue of cost of the prescription, other than that it is awful that economic factors affect access to medical resources. Have you checked whether your insurance will cover it?
08-24-2014, 07:13 AM   #4
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Thank you DJW and Magnolia24 for sharing your thoughts. I went for my GI Series Friday and I should be hearing from the doctor sometime this week to discuss the medication once more. In the meantime I've been in touch with my insurance, and they do cover much of the medication, although it does have a higher deductible than I was prepared to spend every month.

But it's really not the money that has me nervous. I'm not a person to take medication to begin with. I worry about side effects and now I'm concerned that I will have to be on medication for my entire life. But I certainly don't want to not take it, if more damage could be happening inside without me having symptoms...

I do have a list of questions to ask the doc when I speak with him, so I'll come back and update when I know a bit more. Thanks again!
08-29-2014, 05:33 AM   #5
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Are there particular side effects which you are worried about? There are different ways to treat Crohn's, and different ways of dealing with side effects. A good doctor should be able to help you find a treatment plan that takes into account whether there are any particular side effects you may be more likely to get, and help you manage any that may arise. Medications have helped me more than I thought possible. It's not necessarily a bad thing to take something.

Diet will not cause or cure Crohn's, but it can minimise symptoms in many people.

I hope your appointment goes well.
08-29-2014, 06:50 AM   #6
Khaley
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I completely understand your fears about the drugs but they really are necessary and many of us take them with minimal to no side effects. The problem with Crohn's is that symptoms can be very mild while significant damage is taking place. I'm a case in point. I was diagnosed in 2007 and thought my disease was fairly mild. I was placed on azathioprine and basically thought I was in remission for the last seven years. All the while, chronic inflammation was scarring my small bowel and it wasn't until I developed a partial obstruction that my symptoms became bad enough to warrant a CT scan, after which my doctor told me I needed surgery. I was completely shocked. As I said, I thought from my symptoms that my disease was mild. I almost didn't even believe I had Crohn's.

Now I'm also on Remicade infusions and I had surgery three weeks ago to remove about a foot of my terminal ileum. I don't particularly like that I take these drugs but I don't have much choice. I will end up in surgery again if I don't control my disease, and it can't be done by diet alone.

I'm not telling you this to scare you. I just want you to understand that you must take this disease seriously. I didn't for a long time and I certainly learned my lesson. Good luck to you.
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08-29-2014, 07:31 AM   #7
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Are there particular side effects which you are worried about?
I'm one of those people who is wary of taking any type of medicine. I believe most medications cause more side effects than they cure. I have to be doubled over in pain before I even consider taking even an aspirin...so being told I may need to take some kind of medication for life was a shock.
08-29-2014, 07:35 AM   #8
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I completely understand your fears about the drugs but they really are necessary and many of us take them with minimal to no side effects. The problem with Crohn's is that symptoms can be very mild while significant damage is taking place. I'm a case in point. I was diagnosed in 2007 and thought my disease was fairly mild. I was placed on azathioprine and basically thought I was in remission for the last seven years. All the while, chronic inflammation was scarring my small bowel and it wasn't until I developed a partial obstruction that my symptoms became bad enough to warrant a CT scan, after which my doctor told me I needed surgery. I was completely shocked. As I said, I thought from my symptoms that my disease was mild. I almost didn't even believe I had Crohn's.

Now I'm also on Remicade infusions and I had surgery three weeks ago to remove about a foot of my terminal ileum. I don't particularly like that I take these drugs but I don't have much choice. I will end up in surgery again if I don't control my disease, and it can't be done by diet alone.

I'm not telling you this to scare you. I just want you to understand that you must take this disease seriously. I didn't for a long time and I certainly learned my lesson. Good luck to you.
I'm sorry you ended up having to need surgery when you thought you were feeling well. Your story sounds so close to mine. My symptoms seem very mild and I am still questioning whether or not it is Crohns, even though my doctor feels it is. I asked for additional tests before deciding about the medication, which he mailed the script out for yesterday, so I'll probably know more next week.

I do have some questions, if you don't mind.

Were you on azathioprine the entire seven years that the damage was occurring, or did you stop when you thought you were in remission?

Did your doctor do any screening tests to monitor your progress?

Did you make any lifestyle changes during that time, like diet or exercise or stress reduction?

Thanks for your help!
08-29-2014, 10:21 AM   #9
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I believe most medications cause more side effects than they cure.
If that were true, medications would not be so widely used. It is often something of a gamble, where doctor and/or patient has to decide whether the risks are likely to outweigh the positives, but Crohn's is a common condition, and although many of the meds do have significant risks, a lot of them are commonly used, and many of the side effects can be predicted. A good doctor will also take into account the severity of your disease.

Medications save lives everyday.
08-29-2014, 10:43 AM   #10
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Khaley, I too would be very interested to read the answers to the additional questions you've been asked, if you don't mind sharing them with us.
I'm at the beginning of all this myself and the more I read, the more concerned I become about what's going on inside me that I'm unaware of.
Personally, although I too don't like taking any meds, with something that is a chronic condition such as crohns, I don't see it as a choice. I want to live a long and as trouble free life as I can and if that means taking whatever I'm advised to by those doctors who are experts in their field, then that's what I'll do.
I've just had my first gastro appointment come through, for Monday, so I'm going to be writing out a list of questions to take with me so I don't forget anything. I've already seen the colorectal doctor, and had a colonoscopy with biopsies, I understand I may need to have a barium swallow at some point too.
I hope everyone's day is as good as it can be today
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08-29-2014, 11:21 PM   #11
Khaley
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So, yes, I was on azathioprine for the whole seven years. I think I remember my GI doc telling me that azathioprine only works to maintain remission in about 35% of Crohn's patients.

All we've ever done is twice yearly blood work and an annual office visit. I think the blood work he does is CBC, CMP, sed rate, and whatever the test is that checks the therapeutic levels of the azathioprine. I didn't have any other tests until I had a colonoscopy and CT scan early this year because I was having obstruction issues. I don't know if we should have done other tests in that seven year timeframe. I didn't realize that sed rate is not an indicator of inflammation for some people. Clearly, it's not for me as I've never had an elevated sed rate. Since I've made my GI aware of this fact, he ordered C-reactive protein this time around.

So, what I mean by saying I didn't take the disease seriously is just that I didn't think it would have serious consequences for me so I never bothered to question anything. I was very passive about my care. And I didn't know my occasional "little" flares were causing damage. I would usually just ride them out because I was afraid to take the cipro he prescribed. Unfortunately, I'm a little wiser now and will be much more proactive about managing my disease from this point forward.

As far as lifestyle goes, I already had a fairly healthy lifestyle so I didn't have to change much. Over the years I have slowly cut out almost all processed foods and I do try to watch my stress.

I've learned so much from this forum. DiagnosedAndScared and Bunty, I'd say browse these threads and you should get a pretty good idea of the questions to ask. I think the main questions are, "How are we going to get me into remission?" and "How are we going to monitor my inflammation to make sure I stay in remission?"
08-30-2014, 05:42 AM   #12
Bunty
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Khaley, thank you for sharing some more details of your story, I really appreciate it
This forum is indeed a mine of information and I'm so glad I happened upon it.
My youngest son was diagnosed with type 1 diabetes when he was ten, around twenty years ago, and I well remember trying to absorb all the information. This seems much the same, so much to learn, but at least now there's online access to places like this to educate yourself. And of course people like you, Khaley, willing to share what is very personal stuff
Bunty x
08-30-2014, 09:07 AM   #13
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Hi Kahely,

Thanks so very much for sharing how your Crohn's progressed. I spoke with my doctor about some additional tests and he was ordering additional bloodwork, I'll have to see what he ordered when the script comes in the mail and if any of it is to check for inflammation. I'm glad you were already on a healthy diet/enjoying a healthy lifestyle and didn't have to change much in that department. I usually don't eat a lot of processed foods and try to avoid things like GMOs and transfats as a rule, but I do have the occasional donut binge which I know I need to stop. I am also not much of an exerciser, just 1 mile or less walks with my dogs, so I am trying to increase that too.

I hope the new medications help to get you into remission!
09-16-2014, 06:38 PM   #14
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Hi everyone! I wanted to pop back in and let you know that I got the results of my other tests in yesterday. The prometheus IBD panel read that my issue is unlikely Crohn's, and my comprehensive stool culture showed no issues at all. So for now, my doctor and I are going to take a wait and see approach.

I had some bad cramping about a week and a half ago, but strangely, after taking a round of antifungals for an unrelated issue, I started to feel better. (After the heavy antibiotics I was given back in June, when this all first started, I became besieged with yeast, apparently, even developing oral thrush).

This same thing also happened several weeks ago, the second time they treated me for yeast...I think at the end of July/early August. The yeast infection appeared to clear up, and so did my stomach pains. But then the yeast infection returned again, now for the third time, and so did the abdominal pains...but this time I am on antifungals through next week and I am feeling much better now than I did before I started this round, so we shall see.

My doctor, as nice as he is, does not believe that my inflammation and pain can be fungal related, and there was no notes of yeast overgrowth in the stool cultures that just came back, but he did say my gut flora might be off and that if I still don't feel well, the next step would be a hydrogen breath test to check for bacterial overgrowth in the small intestine. Of course, if I have that, they'll treat with antibiotics, which will make my yeast issues worse, so hopefully that's not the case.

The stool cultures also showed no signs of any of the nasty bacterias out there, or giardia, so that's a good thing too. I honestly think I have yeast or some other fungus in the small intestine causing my issues, and I am now making my way through a book called The Fungus Link, along with another book called The Yeast Connection. Both offer diet and supplement ideas to get yeast out of your system. I'm thinking it's worth a try. And if I'm wrong, then so be it. It's just a diet, and maybe some garlic tabs (to kill yeast) and extra probiotics, after all. (I'm also eating whole milk, organic, plain yogurt and live organic sauerkraut daily in an effort to build up my good bacteria too).

I also read that garlic kills a lot of bad bacteria too, so if it's small bacteria overgrowth, maybe it will help with that too.

Oh, I'm also thinking of trying fish oil for the inflammation. My doctor says he does not prescribe that for inflammation in the intestines, so I'm looking at over the counter brands of both fish oil and krill oil and honestly, my head is spinning. Has anyone had any luck with over the counter brands, and if so, which do you recommend?
09-16-2014, 07:47 PM   #15
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Hi everyone! I wanted to pop back in and let you know that I got the results of my other tests in yesterday. The prometheus IBD panel read that my issue is unlikely Crohn's, and my comprehensive stool culture showed no issues at all. So for now, my doctor and I are going to take a wait and see approach.

I had some bad cramping about a week and a half ago, but strangely, after taking a round of antifungals for an unrelated issue, I started to feel better. (After the heavy antibiotics I was given back in June, when this all first started, I became besieged with yeast, apparently, even developing oral thrush).

This same thing also happened several weeks ago, the second time they treated me for yeast...I think at the end of July/early August. The yeast infection appeared to clear up, and so did my stomach pains. But then the yeast infection returned again, now for the third time, and so did the abdominal pains...but this time I am on antifungals through next week and I am feeling much better now than I did before I started this round, so we shall see.

My doctor, as nice as he is, does not believe that my inflammation and pain can be fungal related, and there was no notes of yeast overgrowth in the stool cultures that just came back, but he did say my gut flora might be off and that if I still don't feel well, the next step would be a hydrogen breath test to check for bacterial overgrowth in the small intestine. Of course, if I have that, they'll treat with antibiotics, which will make my yeast issues worse, so hopefully that's not the case.

The stool cultures also showed no signs of any of the nasty bacterias out there, or giardia, so that's a good thing too. I honestly think I have yeast or some other fungus in the small intestine causing my issues, and I am now making my way through a book called The Fungus Link, along with another book called The Yeast Connection. Both offer diet and supplement ideas to get yeast out of your system. I'm thinking it's worth a try. And if I'm wrong, then so be it. It's just a diet, and maybe some garlic tabs (to kill yeast) and extra probiotics, after all. (I'm also eating whole milk, organic, plain yogurt and live organic sauerkraut daily in an effort to build up my good bacteria too).

I also read that garlic kills a lot of bad bacteria too, so if it's small bacteria overgrowth, maybe it will help with that too.

Oh, I'm also thinking of trying fish oil for the inflammation. My doctor says he does not prescribe that for inflammation in the intestines, so I'm looking at over the counter brands of both fish oil and krill oil and honestly, my head is spinning. Has anyone had any luck with over the counter brands, and if so, which do you recommend?


It is not my place to tell an individual what to do, and I am NOT saying what you or don't have, but the fact that your IBD serology is negative is completely meaningless. The only use of it is to perhaps differentiate between UC and Crohn's. It's sensitivity (being + in someone with disease) is not good. I would never someone they don't have Crohns or UC based on negative serology.

Just one silly doc's opinion
09-17-2014, 09:19 PM   #16
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It is not my place to tell an individual what to do, and I am NOT saying what you or don't have, but the fact that your IBD serology is negative is completely meaningless. The only use of it is to perhaps differentiate between UC and Crohn's. It's sensitivity (being + in someone with disease) is not good. I would never someone they don't have Crohns or UC based on negative serology.

Just one silly doc's opinion
Thanks for sharing your opinion. To ease your concerns, my doctor did tell me the test was not definitive. He is also not entirely convinced that my condition is not Crohn's, but given my concerns that it could be something else, he is now okay to give it a wait and see, but with the understanding that if my symptoms worsen I'm to go for that hydrogen breath test. We also spoke of the camera you swallow...

Personally, there are several things, besides just the IBD serology test, that make me think it's not Crohn's. I'm not in either of the main age groups when this disease is diagnosed. No one in my family has it. I don't suffer from diarrhea or bloody stools. I did not have any ulcers, strictures, fissures, or the like. The only thing they did find on any of my tests was the inflammation and some granulomas.

And, as I said, with the intro of the anti-fungals, my condition improved. A lot. So for now I am going to try and heal myself. I picked up a good brand of probiotics to complement the organic yogurt and live sauerkraut that I've been eating. I'm researching enteric coated fish-oils to help combat the inflammation. I've started exercising regularly, rather than just when the mood strikes me. I'm going to give this anti-yeast diet a whirl. The diet is similar to diets that starve out bad bacteria from the small intestine, so it might help if I have that as well, and it will also help to uncover any food intolerances, since you add foods back slowly. Oh, and I'm going to try to eat raw garlic daily, rather than just in salad dressings, since that kills yeast and bad bacteria.

And if I'm wrong, then I guess my condition will worsen and I'll still end up on medications. But as of right now, I'm in pretty good shape, so I believe it's worth a shot to try to fight this the natural way.
09-18-2014, 07:58 AM   #17
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One of my favorite sayings is that "our bodies don't read the textbooks." Nowadays we are seeing many brand new cases of IBD in unusual age goups- pre schoolers and those way over 50, and more than 90% of new cases of IBD occur in those without any family hisotry. Though many things can cause inflammation in the terminal ileum, the granuloma finding is concerning for crohn's. Symptoms can be all over the map.

I AM NOT SAYING YOU HAVE CROHN'S.

What I am saying is keep your radar on at all times. IBD can be a very odd beast. Some go years between attacks feeling normal without meds. Others (like US president Dwight Eisenhower) are "one and dones" where they get one attack and really never know from it again.

Diet certainly plays a role. The problem is no one knows exactly how that translates to each individual patient. Be very careful of those here who preach diets as gospel. Keep a food journal of what does and doesn't bother you.

Assuming everything continues to be quiescent, about 12 months after your attack I would strongly consider rescoping with biopsies. It may be useful.
09-18-2014, 08:22 AM   #18
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I have a 3 year old diagnosed with Crohn's. She didn't have many symptoms, and she never had an elevated CRP (one of the tests that may have been in your lab work). She is slightly iron deficient. She did have elevated ESR, but I was told it could mean anything. Not too much to go on there.

There is no family history of IBD. Her scopes showed serious inflammation in her colon, and the biopsies were positive for granulomas. The scope had to be stopped for fear of perforation.

I would not want uncontrolled inflammation to damage her colon beyond repair. If I were in your shoes, I would be balanced and make sure that you don't have hidden inflammation before deciding about the medications. It is a serious and difficult decision.

I hope for the best for you!
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
09-18-2014, 08:23 AM   #19
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One of my favorite sayings is that "our bodies don't read the textbooks." Nowadays we are seeing many brand new cases of IBD in unusual age goups- pre schoolers and those way over 50, and more than 90% of new cases of IBD occur in those without any family hisotry. Though many things can cause inflammation in the terminal ileum, the granuloma finding is concerning for crohn's. Symptoms can be all over the map.

I AM NOT SAYING YOU HAVE CROHN'S.

What I am saying is keep your radar on at all times. IBD can be a very odd beast. Some go years between attacks feeling normal without meds. Others (like US president Dwight Eisenhower) are "one and dones" where they get one attack and really never know from it again.

Diet certainly plays a role. The problem is no one knows exactly how that translates to each individual patient. Be very careful of those here who preach diets as gospel. Keep a food journal of what does and doesn't bother you.

Assuming everything continues to be quiescent, about 12 months after your attack I would strongly consider rescoping with biopsies. It may be useful.
Thank you. Sounds like we're on the same page. I already mentioned retesting to my doctor. We did not discuss which tests yet, but he was definitely agreeable to retesting in 12 months. And, as I said, if I don't feel completely better soon, we will be doing additional testing now.

Also, if I do end up on meds, he was agreeable to keeping me on them for one year, retesting, and then (if I'm better), taking me off them to see how I do, and retesting again to make sure I'm staying better.

As for the diets, I agree with you there too. From well meaning people I've already been recommend the specific carb diet and an alkaline diet, as well as recommendations for a nearby naturalist who removes foods after doing blood-allergy testing. After much reading on my own, I decided to try the fungal diet for now, mainly because of my reaction to the anti-fungals. But I do understand that everyone is different.

I've also been keeping a food/symptom/exercise/supplement/medication journal for about two weeks now. So far I haven't noticed a trend for my minor symptoms that seem to come and go, other than the two drop offs in symptoms both times after taking the anti-fungals.

I'm definitely taking this seriously, and I am doing a major lifestyle overhaul right now. The biggest obstacle for me are several sources of stress that I'm under right now, which don't seem like they will be alleviated any time soon. But I am also in the process of scheduling a private lesson with a Tai Chi instructor I used to take lessons from, to go over some of the exercises and movements that I forgot over time, so I can incorporate them into my daily routine as well. Hopefully they will help too.

Whatever the cause of my inflammation, please wish me luck in fighting this!
09-18-2014, 04:36 PM   #20
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I have a 3 year old diagnosed with Crohn's. She didn't have many symptoms, and she never had an elevated CRP (one of the tests that may have been in your lab work). She is slightly iron deficient. She did have elevated ESR, but I was told it could mean anything. Not too much to go on there.

There is no family history of IBD. Her scopes showed serious inflammation in her colon, and the biopsies were positive for granulomas. The scope had to be stopped for fear of perforation.

I would not want uncontrolled inflammation to damage her colon beyond repair. If I were in your shoes, I would be balanced and make sure that you don't have hidden inflammation before deciding about the medications. It is a serious and difficult decision.

I hope for the best for you!
Thanks for your thoughts, and I'm so sorry to hear about your daughter, but glad to hear you caught it before it worsened. If you don't mind me asking, what kind of symptoms was she having that prompted the scope?
09-18-2014, 08:25 PM   #21
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The symptoms that were ongoing, were one loose BM every other day (yes not even one per day!) and perhaps a teaspoon of blood some of the time with the BM. It was dismissed for a number of months as constipation (!) which was based not on the consistency but the frequency.

I persisted, because of those symptoms as well as her exhaustion, and she was complaining of soreness in her feet and knees (the GI sent us to a neurologist, thinking it might be a different issue) Eventually, between my nagging and an elevated ESR, the scope was scheduled.

In hindsight, I think that if she didn't look so healthy it would have happened sooner because there were quite a few signs - but she looked sturdy, and the labs weren't bad. I can understand the confusion.

Rambling answer, but hope it offers some perspective.
09-19-2014, 06:53 AM   #22
MissCadenza
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I have to say that I understand your hesitation with taking medication - I really don't believe any of it works until I see results, for instance when they shoved me on Prednisone after my inital flare and hey, I got better! I'm a skeptic about anything until I have hard proof of it. That's the analytical scientist in me and it won't change.

I'm on 50mg Imuran right now and that, plus a really restricted and oh my god it's so bloody boring diet seems to be working. I wouldn't faff around with daft diets like paleo or alkaline or whatever, just identify your trigger foods and lay off those. Your diet should revolve around your 'safe' foods and well-meaning interfering people who think they know about nutrition will not understand that because in their eyes they can't fathom the concept of 'trigger foods' and think following a really strict diet where you MUST EAT THESE THINGS will help. No. It really doesn't. Make lists. Shop for what you know is safe and by the gods stay away from anyone who thinks otherwise. I had to tell a nutritionist friend of mine to butt the hell out of my life because she was pushing me to try some finicky diet that had a bunch of my trigger foods on the 'allowed' food list and we ended up having quite a row. Diet is hugely important but you cannot control your crohn's with it alone. You do need the medication.

Also I think if you believe you're going to get side effects with a medication then you will, because you'll be all nervy thinking 'oh noes, this happened, it's a side effect, the medicine is out to get me, I must go back to the doctor, aaaaaah' and then you turn into one of these paranoid people who won't take anything and basically runs when you are prescribed anything. You might get side effects. But don't expect them to happen. If they do they do and if they don't, then you're lucky!

Good luck, let us know how you get on and make that list of trigger foods. Sometimes you have to go through a bit of pain to work out what they are but it's worth it in the end.

Edit: And get a cat. Best stress relievers ever. I love my Dobbycat, he was the best present I ever bought myself.
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09-19-2014, 09:51 AM   #23
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Pilgrim: That's great that you just knew there was more to your daughter's condition and persisted until you got an answer. As they always say, "Mom knows best."

MissCadenze: Glad the prednisone worked for you, even if you were reluctant to take it. I have a cat, actually two, and one of them is the most annoying little creature ever. He's whiny, clingy, persistent, and loud. LOL! That said, the other one is a major comfort when you're not feeling well.
03-21-2015, 08:44 AM   #24
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Join Date: Aug 2014
Not sure why my post went up twice...see below for my post.

Last edited by DiagnosedAndScared; 03-21-2015 at 10:14 AM. Reason: Post went up twice, not sure how to delete it myself.
03-21-2015, 08:48 AM   #25
DiagnosedAndScared
 
Join Date: Aug 2014
Hi Everyone...I wanted to stop by again and give you all an update. So, I tried the Fungus Link Diet, and it was an epic fail. I think it made me sicker. Then I did end up trying the Specific Carb diet, and that helped some, and I am still following it with some modifications. I had ups and downs all through the end of 2014, and had another bout with yeast and worsening abdominal pains, and once more, the anti-fungals helped a bit, but did not fix me completely. In January, I went for a second opinion and cared less for the new doctor, so I ended up sticking with the first, and he ordered a few more tests, since I still wasn't feeling well.

I also went for that IgG and IgA testing that I mentioned above that someone had recommended, and, wouldn't you know it, THAT'S when I saw the most improvement. And fast. I removed the foods I was allergic to at the start of Feb, and by the end of the month, I was feeling the best I had since I first got sick in June.

Between the SCD, the foods I hadn't added back in yet, and the allergens I took out, I am pretty much eating a Paleo Autoimmune diet now...and I feel great.

And now for the biggest news...

I went for a capsule endoscopy at the start of this month, and my ileum is completely better. No signs of inflammation, scar tissue, narrowing...no nothing. Now, the doctor who was so sure it was Crohn's is saying it may be Crohn's in remission, or it may have been something infectious. If you'd like to read more about it, I posted some about my experience on my blog. (Hope it's okay to share links like that here...I was hoping it might help someone else!) You can check it out here: http://donnaandthedogs.com/crohns-disease-not/

Thanks, everyone, for you helpful advice. It was much appreciated!

Last edited by DiagnosedAndScared; 03-22-2015 at 10:22 AM. Reason: typos
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