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15 years on my own with this…

15 years on my own with this…

I am 40 years old and have just got my official diagnosis of Crohn’s disease. But I know I’ve had it for almost 16 years. I would keep “treating” it on my own, silently, if I didn’t recently have a scare and decide to make another foray into the world of “conventional” medicine. Now, for the first time in all these years, I feel lost. So, sorry, but this is a long post. I’ve just never told my story to anyone (except my sweet husband who’s the only one who knows and supports whatever I try to do.)

I never had good eating habits. I never was a kid with great hunger or sense of smell so food, other than salty butter on white bread and all those wonderfully colorful sugary kids cereals, never appealed to me. I’ve been thin all my life. When I was sick, I was pumped with antibiotics, and my family never knew organic or veggies that weren’t mushy until I started a garden as a teenager. So I never had a great diet. But when I moved out on my own at 22 (3,000 miles away from home) it only worsened: pastries for breakfast, mall food for lunch and sugary cereal or fast food for dinner; and I worked like crazy.

The July that I was 25 I was in a car accident – the car was totaled but I suffered no major injuries other than muscle strains. Nevertheless it was a stressful event due to living away from family and a subsequent lawsuit (although I was the victim, the other driver tried to blame it on me and picked apart every past medical and psychological problem I ever had trying to avoid paying anything in a settlement).

Within a few months of the accident, I began experiencing symptoms of vomiting, abdominal cramping, weight loss, & diarrhea – these would even occur at night and awake me from sleep. Within 1-2 months I could not eat anything without vomiting within an hour. By December this became so constant I sought medical care.

Between then and the following spring, I lost over 20 lbs (from 140 to below 120). All during this time I had regular doctor visits – the doctor first thought it was IBD, but after what he determined was only “minor inflammation” from a sigmoidoscopy, he later diagnosed it as IBS and I was told it was stress. I was put on various drugs (I remember only anti-depressants and sulfasalazine). But my symptoms worsened, occurred at night, and despite emotional highs such as becoming engaged there was no improvement. I experienced some rectal bleeding, and the constant diarrhea limited my activities severely. Repeated requests to my HMO doctor for referral to a gastroenterologist were denied ‘pending further testing’. The time I spent with this doctor was the most frustrating time of my life: I felt like I was on the prescription of the month plan and never felt he really listened to me and my explanation of symptoms.

Within nine months or so, I had become so debilitated by this illness that I resorted to accepting a buyout when my company was purchased as I could no longer maintain a full time work schedule. As our finances did not permit me to retain my health insurance, I left off regular medical care. When I called my doctor to tell him, the last thing I remember him mentioning was that now he felt I perhaps did have some form of IBD, perhaps Crohn’s disease. I had never heard of it before.

Well, at that time I sought holistic practitioners and natural medical alternatives. On the advice of one of them, I eliminated all dairy, wheat, corn, and refined sugars from diet – my diet consisted of mostly proteins, cooked vegetables. And I did all the research I could on Crohn’s. Elaine Gottschall’s book and the SCD eventually became my guide. After about a year symptoms improved considerably. By that winter, I was even able to start working part time again. For the next several years I maintained the diet of very limited complex carbohydrates: no refined sugar, very limited dairy, corn, wheat and grain products. (And all the diets talk about the evils of caffeine and alcohol. I did my best on that front.)

However, over time I have gradually lessened the strictness of my diet. I found it really hard to keep the diet up. By this time, we’d move to wine country and both my husband and I work in the industry; wine practically comes in to the house uninvited. We live in a town that’s a culinary mecca. One can resist fresh baked French bread and pastries only so long. (And don’t get me started on cheese…)

But along with a lessening of the strictness of my diet, I noticed increasing episodes of diarrhea, cramping, etc but they were never as severe as the first onset – no vomiting, no weight loss, no rectal bleeding. But I did begin to experience increasing fatigue, skin problems on my legs, ulcers on my tongue, asthma, along with other symptoms I thought were indicative of hormonal changes.

I sought treatment for the skin problems on lower legs – blotches of red spots first appear as bright red, than with passing of weeks become darker and darker gradually fading away. (They never bother me, other than preclude the wearing of skirts and shorts sometimes.) Originally my primary doctor at time thought it was capillaritis. She referred me to a rheumatologist who did not think it was, so referred me to a dermatologist who diagnosed it as just simple dermatitis. This same dermatologist diagnosed the sores on tongue as aphthous ulcers. He recommended continual antivirals. (Yeah, right.) But I wanted to know why I should suddenly develop these problems. What was going on in my body? I was told, “well, some people just do.” Helpful.

So this past winter I began seeking medical treatment due to the increasing fatigue. I had reduced my work schedule over the last 2 years due to fatigue in order to manage my energy. Blood work in December 2011 indicated low Vitamin B and D levels. I was tested for autoimmune illnesses (lupus, Sjogrens) – which all came out negative except for positive ANA (twice). I was diagnosed with asthma in January 2012. (I had only had it seasonally with allergies before, now it is year round.)

Then, in April 2012 my primary doctor (internal medicine) ordered a colonoscopy due to my history of digestive problems and a family history of polyps. I was shocked when the surgeon found a stricture in my descending colon. He did not even feel he could get past the area with a pediatric scope. So a barium enema was performed the same day, which confirmed the stricture and also found “changes in the mucosal lining” (which no one has yet explained to me). This surgeon is an oncologist, so recommended that I see a gastroenterologist.

Finally, so many years after requesting to see one, I got to see one. I thought, “gosh, I thought I knew myself and my disease and was controlling this, but here a structural change has occurred in my colon”. It scared me. I like my colon; I’d like to keep all of it. I had no indication that I had a stricture, no pain or feeling of blockage, only that I had begun to experience some occasional constipation which was entirely new for me. Overall, I think I just got used to living with the symptoms: diarrhea, pain in my joints along with brief fevers. I knew when I brought it on with my triggers so I would just pop ibuprofen and behave better for a few days with my diet. I never, ever thought it would come to this.

So the doctor promised to look at my history (I gave him a much briefer outline of the story above) and test results, and sent me home with samples of Apriso to try. It was a dream for three days – I didn’t know I had gotten used to so much bloating! And I ate a burger, with a bun, with no bad affects! I thought, “at last!” Then the reaction kicked in. I went in to a horrible flare, the worse diarrhea and bout of pain and fever that I’d had since the onset. In the two weeks between my initial consultation and the follow up I lost 7 lbs. (Granted, no 40-year-old woman balks at losing some middle age weight gain, but I couldn’t live on this diet plan!)

The second visit with the gastro-doctor – who seemed so interested in me the first visit and talked about all kinds of new tests and possibilities for my stricture – confirmed all my fears about seeking medical help again. Dr was more brusque and disinterested, and it didn’t seem like he really looked at anything I had left him (I’ve since learned that’s just his personality. Two other doctors have said they have heard the same thing about him. Great.) The first question he asked me was if I was taking any medicine for my something-something-itis? Huh?! I was so confused I had to ask him what he meant. He said are you taking anything for your Crohn’s disease (which he hadn’t yet told me that the blood work had proved positive) – and I thought ‘YOU’RE my doctor so if you haven’t given me anything, and I didn’t write anything on the paperwork from 2 weeks ago how am I going to be on anything?’ Besides the samples he gave me which I reminded him of! ARRGHHH. Well, must calm down. Anger and stress not good for this either. >:-[

I told him about my reaction to Apriso, which I’d gone off and on again to try to confirm that it was a reaction to the med, and he just said “seems like you don’t react well to it” and prescribed sulfasalazine. If he’d read my history he’d know I’d tried this med before and it didn’t do much. I also found and he hadn’t even looked at the colonoscopy results. And he didn’t say anything this time about scanning for cancer like he talked about the first time (thanks for that scare). Last time it was “I have friends at Cal Pac Med Center and we can figure this out” and this time it was “well you can do nothing or you can find a surgeon in town” to address the stricture. I left feeling so frustrated.

But I thought, I’ll give this med a try. After all, I was much sicker when I was taking it 15 years ago and it did nothing for me then. After a couple of days though, back again came the symptoms: diarrhea, fever, and exhaustion. I could not; I cannot function with the 5-ASA drugs. (Maybe that’s what made me worsen all those years ago, who knows?) And I’ve been researching again, too, and one doctor (I read a book by a “real” one just to make sure I wasn’t biased) even said if you’ve had a reaction to one drug in this class, another won’t help. Then why did he give me another drug in the same class?

Again, frustration. I begin to think, “forget this, go back to the diet”. But then I know I am not that disciplined. And I already have a 50% stricture of my colon. If the inflammation continues, then it will be surgery. Which all my doctors say has a considerable risk. But then I think, I can’t live with meds. He’s starting me on the ‘basic’ ones (5-ASA). I will not take steroids and anything that blocks my immune system is out of the question for me; it’s already weak as it is. And then there is my general fear and aversion of doctors. And then there’s also my mother who frets so since she is worried for my health and wants me to seek medical attention. (I want to make everyone happy – got to get over that).

So, here I am trying to reintroduce myself to the diet, this time making sure I avoid high fiber foods. I have had one glass of wine in 3 weeks (and doing much better than I thought I would). Cut coffee in half. And somehow am dealing with stress without carbo-loading. But I dread the doctor visit next week. My husband I wonder how fast we can move far away to a deserted island and live off of tropical fruits and fish; but alas we live in reality. A reality that I don’t feel I can manage as well as I used to.

Then I found this forum and thought maybe I can tell my story. And I’m following what “acemagic” is doing with the Paleo Diet. And I am amazed how many people handle this in so many ways and support others. And I am hoping that maybe someone can endure this very long story and say “hey, I know how it feels, and this is my story, too”. Because it’s a very long story, more than 15 years long, and I don’t know the ending. And that’s a scary story to me.

I hear you, I totally feel your pain and I wish you the best of luck. You're going to feel incredibly tired after doing Paleo for a few days. Push through it and your energy levels should bounce back (eat fattier meats to speed this along). If you're avoiding fiber, be careful. Paleo can be pretty high fiber, especially if you're eating raw veggies. I highly recommend investing in a juicer - even a cheap Walmart one if you have to - and juice your fruits and veggies. All the nutrients (and honestly, it tastes surprisingly great!) and none of the fiber. Let your gut heal for a bit.

That being said, I started Paleo AFTER getting my stricture removed surgically. I have no idea if you can reverse the effects of a stricture, but it doesn't hurt to try at all. Feel free to message me if you have any questions. Good luck!!

Thanks, Adam, for your reply (and so quickly too!). I do in fact have a juicer. Since I have backed off raw veggies until things calm down (oh how I miss my salads) and I going to try to get back in to the habit. Just got some carrots and apples the other day. I'm not too adventurous with it. But I do like the juice, which is good as in general I never feel too much of an appetite and end up going most of the day without food, which turns out badly later in the day with binge snacking. I want to research the Paleo Diet a bit more, re-read my Gottschall, and try not to go too crazy food journaling to figure out what my body wants out of me - not feed the obsessiveness while still feeding the body is another of my challenges :ysmile:.

All the best to you too - like you, I feel 'in my gut' that diet is a big component of this.


Naples, Florida
Greetings and welcome :)

I'm going to comment as I read your post as it is long indeed :)

1. The sores/rash on your legs are very likely erythema nodosum, a common extraintestinal manifestation of Crohn's Disease.

2. Your fatigue is likely due to vitamin B12 deficiency. *reads more* Ah, you know that. What was the last time your vitamin B12 levels were tested and what was the specific number? We also have a great wiki entry on fatigue that contains other causes.

3. Hoo boy, sounds like you had a doozey of a doctor. I would strongly suggest finding a GI who IS interested in your condition and listens to you. Even if you try to control this with diet, you need to be monitored VERY carefully.

Ok, so you refuse any sort of immune suppressing drugs, fair enough. How about the biologics?

I love the paleo diet for Crohn's Disease but I think you need to get that inflammation under control and fast. I'd suggest researching enteral nutrition. After you get everything under control, then maybe slowly move towards paleo if that's what interests you.

In addition, in my opinion they need to do some tests to find out if your strictures are more fibrotic (scar tissue) or more due to inflammation and determine what the true extent of your disease is including the small bowel. If the strictures are just scar tissue, then surgery may in fact be the best option if the narrowing is severe. Scar tissue isn't going to go away and where there are strictures, there is increased chance for fistulae and you do NOT want to go down that road.

Again, welcome! We're here for you :)
Thanks so much, David, for your post.

1. As for the spots on my legs, they are not painful or bothersome in any way other than the look, and thus far have not proved to be like any other skin problems related to Crohn's. Even my dermatologist, after visiting him since my diagnosis, said it was not either of the two related skin conditions. I'm glad I have never had any pain, but just having the inflammation in yet another manifestation gives me pause.

2. I had my Vit B12 level tested Nov 2011. The result was 651, which was not low per the parameters of the test, but my doctor thankfully feels that the levels acceptable in the US are too low. So she recommended supplements. I take a sublingual B12 2500 mcg each day. I did see a moderate improvement since I started those. I actually have entire hours when I feel I have energy. (Wee!)

Lastly, I appreciate your other comments and will keep them in mind for my next dr appt. The biologics' risks scare me, but I don't want close out all my options. My body never tolerates any med, even OTC, very well. I have my third dr appt later this week and I am going to really try to stand my ground and talk about options and about some of the other testing that he'd mentioned on the first appt but not on the second and I want more of a picture of what's going on. He had mentioned having an endoscopic ultrasound done at CalPac in SF. The surgeon who had done the colonoscopy had told me he wouldn't feel comfortable himself doing an inflation of the stricture without really understanding it and what's causing it, and that made such sense to me. I just need to find a GI that agrees.

I think I am just beginning to understand that I can have inflammation without really bad symptoms (or any at all) and that's taking some mental digestion.

Thanks, again!


Naples, Florida
Ooooh! I like your doctor's perspective on B12! It's rare that any feel that the B12 reference range is too low. Do you know what specific number they want you to be above? I agree with them 100% and am forever having to make that argument, so it's nice to hear a doctor stating the same.
She didn't say what particular level she was looking for. (This is my internal medicine doctor, not the GI). She just recommended beginning a B12 supplement as I began seeing her for decreased energy. It was that and Vit D that she recommended.

That said, she doesn't expect to see me until the end of the year and I'll ask her to re-test the level and see if it has improved. Now that I know my Crohn's is in my colon I understand why I was deficient.
So thought I would update the story, see if I can get any more input.

My last (hopefully) appointment with the GI: I walk in feeling really good after a week on the Paleo Diet. He says, "you look really good". I told him, "yeah, and we need to talk about that." I made the mistake of telling him I've been doing a lot of research. (Don't intimidate them, they scare easily.) And that the 5ASA, even the old standby sulfasalazine, was just not working. Too many bad reactions - I simply could not function. And as a self-employed person paying my own insurance, I need to function.

My GI apparently decided he didn't know what he could do for me. So he rattled off a couple more drugs that he thought he could try but then said that maybe what would be best would be to refer me to a GI that specializes in IBD. (Guess he wasn't as interested in it as he first said he was.) So he's referring me to UCSF. He also said that the endoscopic ultrasound that he talked about the first visit wouldn't really be able to show anything. (Then WHY am I seeing him?) :yrolleyes:

So after he decided on the referral, I mentioned that I have been analyzing my diet. And that I thought changes I made are helping me. He actually stood up and started walking out of the room! :mad2: So I kept saying that I learned that amino acids from protein are essential in repairing the intestinal lining, and that since I had changed from a primarily vegetarian diet to include more protein I felt a lot better. He says, from the doorway, "oh yes, protein is essential you shouldn't cut that out." Hmmm so he does admit there ARE dietary changes that can be made and yet he NEVER talked about that. :angry-banghead:

Thing is, I am really interested in controlling inflammation and achieving remission through diet and nutrition. (I've started seeing a Naturopathic Doctor as of today to start that journey; making sure I have the supplements I particularly need.) I think that with what I believe is a mild case, and so many studies showing the effectiveness of it, it's possible. I just don't know if a US doctor, especially in such a place as UCSF, is going to be on board with that. I wonder if any one has had any such luck?

I really just want a GI who can agree to monitor me and deal with the stricture some time this year and give diet a try. There is such a thing as a patient bill of rights, right? But is there a GI doctor that will put meds on the back burner?
Hehe I think you'll be hard pressed to find a doctor that recommends putting meds on the back burner, but there are plenty who recognize that diet is important in controlling the disease a bit more.

Keep in mind that you're your own person. if you feel worse on something, you should probably stop it. Listen to your doctor's advice, but just recognize that the advice given won't work for everyone. 6-MP paralyzed my legs for 2 days. I'm glad I stopped taking it, AGAINST my doctors advice. As you know, I think you're absolutely doing the right thing, taking the bull by the horns and being proactive, but do so cautiously :)

But definitely take control and don't do anything if you feel uncomfortable with it.