New- Questioning Diagnosis

[xtine]

Hi There,

I'm a 37 year old mother to 3 wonderful and lively kids. I was diagnosed with CD in May after a colonscopy. The Dr. saw inflammation at the TI and she did a biopsy which came back consistent with Crohn's. She told me it's mild as there wasn't too much inflammation that she could see and that I could be in the beginning stages of CD.

I wasn't suspecting CD at all since the reason I went in for the test was that I was having unexplained tailbone pain. Over a few months prior, there was also a slight change in my BMs- i found I either ranged from being constipated to having a slight urgency to go more often but only like once a day. Right now, constipation seems to be my issue again.

My diagnosis through me for a loop- it was unexpected but does seem to explain a bit. I deal with constipation but my main complaints are joint pains which have been going on mildly about a year and only seemed to have gotten worse over the last month. I seem to have lower back pains, SI joint pains, pains at the bottom of the lower ribs as well as pains above my hips. The pains come and go and I have given up gluten which has helped a bit.

I am seeing a Naturopatic Dr. and trying to follow her protocol.. she claims that she has gotten many CD patients into remission without the use of medications... I am getting a bit reluctant because I am not improving as much as I thought I would. I am wondering if I am doing more damage by not going on meds. My GI doctor wanted me to start some mild steroids.

So i guess I'm wondering..

1. How accurate is a biopsy to test for CD? I asked my GI if this could be anything else and he mentioned lymphoma.. now of course I'm freaked out about that but blood tests came back fine.

2. is it possible to successfully go into remission through diet alone? or is it best to take the meds to get into remission and then try to keep things at bay with a good diet?

3. does anyone else deal with constipation, joint pains as main symptoms? is this just the beginning of something worse??

4. i am wondering about other symptoms as i often find my eyes irritated or the skin around my nostrils inflamed. i also feel like my lower throat is sore.. or it feels somewhat like the lower tonsils are irritated. recently i have been having heartburn or a burning feeling in my esophagus- are these common with CD?

I suspect a lot of what I'm feeling isn't helped by the anxiety I have been getting.. I am a bit of a basket-case since my diagnosis. I am worried I have something terminal that the doctors just haven't found.. I can't seem to accept the CD diagnosis as this isn't the life I want for myself. I am finding it increasingly difficult to deal with all the aches and pains I have been getting. I still don't have much of a support group for example my father doesn't believe this 'disease' exists and feels that I can control things with just diet. I have been trying the diet for a good month but I'm not sure how much it's helping. I am freaked out about trying and being on meds.

Is anyone as confused as I am? Has anyone doubted what they have?? What have you done to help cope with all of this after being newly diagnosed?

Regards,
Chrissy

 

[Angrybird]

Hello Chrissy and welcome to the forum. It can definetly be tough when first diagnosed as for some like yourself it isn't expected and there is a lot to take in, I had never heard of crohns until I was diagnosed so didn't have a clue on what to expect initially. For some it can be diffucult to actually get a crohns diagnosis due to biopsies being uclear but the fact your doc has said the biospy is consistant for crohns this does make it seem unlikely that it can be something else.

If you do have inflammation then you do really need either a med like steroids or some here have found success going the route of diet with enteral nutrition - this is liquid only so can be tough to stick to but it can really help with calming the bowel down. Everyone is different with what will work for the, sometimes following a specific diet or cutting out problem foods (keeping a food diary can assist with this) will help but for others they do need to go the medication route.

A lof of people here (myself included) do find they have problems with joint pain and I find it can get worse when the crohns is active - also known as being in a flare up. One thing it is worth asking your doc to do some bloods to do a full vitamin level check. It can be common for people with crohns to have problems absorbing vitamins (such B12, D and folate) and can be deficient which can then lead to problems with joints, skin and generally how you feel both physically and mentally.

I am glad you have decided to join as there is a lot of helpful info and support here for you.

AB
xx

 

[Keepingfaith]

Welcome to the forum!

I agree with Angrybird about everything she said. I, personally, think everyone should be on steroids, after DX, to get the inflammation down or do Enteral Nutrition. What you do after that is completely personal.

My main issue was constipation as a child. Ever since I was 18 months till about middle school I was put on every fiber suppplement available & did so many 'naturopath' 'medications'. At the time, it was thought I had IBS. Now, at the age of 15, I take 20 + pills a day as well as infusions/shots regularly because my CD was not DX promptly and now it affects my mouth, stomach, esophogus, ileum, whole colon & rectum. I really do wish I was DX & treated when my symptoms were mild. I wouldn't be desperately trying to fight to keep my colon & get in remission if it were found/treated earlier.

To answer your questions:
1) The biopsy/blood work would have DX cancer if it was present. Cancer in the Ileum, where your disease is, is rare. The best way to DX Crohn's is if there are granulomas in the biopsy. That is the best way. It is possible to also have Crohn's without graulomas if the disease hasn't been present long or for whatever reason.

2) Some people can go into remission with diet alone. Since your disease is mild, it may be easier for you. It is possible to *feel* good on a diet and be flaring still. I have only met about 5 people who stayed on a diet to get into remission and NOT end up in the hospital one day with major complications and end up having surgery. Usually, remission is short lived that way.

3) A lot of people have joint pain with Crohn's. It is the most common complaint in Crohn's patients, aside from GI symptoms. I have Junior Rhuematoid Arthritis with my Crohn's, which is rare. It is caused by the Crohn's though. Usually, once your disease gets in remission, the joint pain stops. The #1 reason why people have joint issues with Crohn's, aside from osteoporosis, is that the inflammation in your blood circulates through your joints and attacks that as well as the joints.

4) Again, all of that is common with Crohn's. Especially eye/skin issues. When your disease is controlled, that usually goes away also. The heartburn is probably from your disease not being controled also. I get a sore throat from ulcers, caused by the Crohn's.

I've always accepted the CD DX because it has taken over my life but I know of MANY others on the forum who are in the same boat as you. Whatever you decide, treatment wise, we are here for you! :hang:

Where do you live? If you live in the US, there are multiple Crohn's support groups for people suffering as well as caregivers. Just google 'CCFA' or 'Crohn's & Colitis Foundation of America'. In other countries, there are also simmilar organizations. Feel free to post questions on the forum! There is a great bunch here. You aren't alone :heart: If you have any questions, feel free to message me. We're all in this together!

 

[Manzyb]

Hi!

I have to agree, if your biopsies came back consistent with Crohn's disease, then it is pretty rare that it would be anything other than that.

It is hard to accept a diagnosis when you did not see it coming at all. I was very ill for 2 years before diagnosis and I was thankful to finally know what was wrong.

The decision to go on meds or try a diet is really a personal choice. If you have mild Crohn's then more than likely one of the mild drugs will work for you to control your disease.

This is an amazing place for advice, friends, and just an outlet!

 

[xtine]

Thanks everyone- i have slowly accepted my fate and am going to go on meds as soon as I can.

Can I ask??? Both sides of my lower ribs hurt-- almost like a burning and they hurt to touch. My left hurts worse than my right- so much that I can't lie on it without it being uncomfortable. The pain is bearable-- uncomfortable but not horrible-- it is just that I don't know anyone to mention pain like this in the forums... Is this common for CD? I am really worried and I don't see my GI for another 2 weeks.

 

[Keepingfaith]

I'm not a doctor but I am experiancing the same pain you are right now. That pain is probably caused by inflammation in the stomach or a partial blockage caused by inflammation in your upper GI. Which side is it on? If it is your upper right it could be your gallbladder. Is your stomach also distended? Sometimes inflammation in your intestines can press against other organs/tissues and cause pain in other places. Also, if you are on Prednisone, that can cause Gastritis.

If it isn't causing you significant pain I wouldn't worry about until you go to see your GI. It doesn't sound ER worthy. With Crohn's, you are going to experiance all sorts of different kind of pains and discomfort. It's part of the disease. A lot of my health problems that I *think* have nothing to do with Crohn's are related to Crohn's from either the medication I take or the Crohn's its self.

 

[xtine]

I have it on both sides but worse on the left... It started about a week or two ago and it has been increasingly worse as well as more constant. Today, The pain is more or less constant but i do notice it less in the AM.

I am not on any meds- I have had a 'script since my diagnosis in may but I have been reluctant and skeptical. I plan on starting my mEd's ASAP.

If this in an obstruction is there anything I can do to help it along??

 

[Keepingfaith]

1) Drink a lot of water throughout the day, especially at meal times.
2) Exercise to get the food moving through your GI tract. Exercise stimulates the bowels.
3) Eat smaller meals and don't eat too quickly. Chew, chew CHEW!
4) If you are having 'constipation' you could drink a mild laxative.
5) Ask your doctor about prescribing carafate. It could be that you have some stomach ulcers. Carafate coats your stomach and you take it at specific times. Usually one hour before a meal or two hours after. I like the liquid.
6) I avoid meat like the plague. I can digest chicken okay but whenever I eat meat, it will sit in my stomach all day and make me miserably full.
7) Eat very little fiber & roughage. It could get 'stuck' if you have a partial obstruction. You can't confuse obstruction pain with anything. It's miserable & very uncomfortable. I have to wear sweat pants/nike shorts because my stomach will get so huge after eating.
8) Try a liquid diet. That way your intestines can rest up. There are a lot of things you can 'eat' on a liquid diet. I 'eat' tomato soup, diluted gatorade, chicken both, popsicles, diluted ensure, smoothies, yogurt, and ocassionaly a milkshake with lactaid.

Liquids/semi solid food would be your best bet to avoid a blockage. Obstructions can be very seriously but many people who have an obstruction do nothing about it. They know what food they can tolerate and if they stick to that, they can avoid haing an NG tube/surgery. Be careful about what you eat. Partial obstructions are an annoyance, if anything. If you start vomitting or are not having a BM for more than 4 days or so, call your GI/Go to the hospital. A friend of mine ended up vomitting her own feces because she waited too long to do anything about it, although she did have a complete, not partial, obstruction.

 

[xtine]

Ok- thanks! Maybe I will just do liquids tomorrow and see how I feel. I will have to get use to all these symptoms-- it is very. Ew for me because up until a few months ago I never had stomach issues (except for slow motility).

My stomach feels bloated too-- I have noticed my pants feel tighter around he waist.

 

[xtine]

just an update- i was careful with what i ate today and the pains are better.. i also passed a lot of gas today.. so it might have been that.. however, it's still tender to touch AND of course today I have a fever. i actually noticed the fever for the whole weekend but it was mild.. today it's a bit higher but up and down.

this isn't fun.. when i asked my GI guy if this inflammation could be anything other than CD he said lymphoma.. now i'm worried about that.. this is what is going on this weekend

- fever
- sore joints and sore by the SI joints
- sore ribs, especially left
- no constipation to speak of.. 2 somewhat regular BM over the last 3 days
- gas
- some shooting stomach pains after eating (lasted about 1 second)
- nauseous on empty stomach before having lunch
- scratchy throat and feeling of heaviness in chest
( just had a cold which started 2 weeks ago so either it's prolonged or i'm catching a new virus??)

I just can't see how this can be CD if I'm not having the bathroom urgency.

my blood tests came back okay.. i have low iron but i am use to that since it's been low for 5 years now... i take pills but my body doesn't absorb much of it. liver, pancreas, white blood cells, red blood cells etc.. all normal.. just slightly high inflammation too.

I'm going to see my family dr about this tomorrow but i really don't' know what she can do for me.

 

[Gculk]

xtine: You don't need to have urgency to have Crohn's. Typically urgency will be an issue with colon inflammation, mild rectal inflammation, or inflammation of the intestines to the point of malabsorption. Since your intestinal inflammation is only mild, you might not have any severe functional signs, such as frequency, bleeding, malnutrition or what have you. It would only give you such symptoms as discomfort, pain, and cramping.

To explain it, imagine you had arthritis. A mild case might only be pain, with no disability, but as arthritis gets worse, the functional disability (stiffness, joint erosion, joint deformation) gets worse and worse. That is analogous to your stomach. Your stomach has mild inflammation, so it has mild signs.

As for joint pains, they are a common symptom of Crohn's as well. Crohn's is primarily autoimmune, and so there are systemic responses such as joint pain as well.

The heaviness on your chest is disconcerting however and should be mentioned to your doctor. Have you ever been tested for asthma? It could be worsened by the inflammation in your gut.

As others said, having the biopsy show consistency with Crohn's is pretty solid, might not be set in stone, but I wouldn't care to wager on it.

As well, this might just be me (I am a pretty science guy, don't really trust the whole naturopathy/homeopathy bit), but if your naturopath doctor says they've induced remission on Crohn's patients, I would ask them if they would mind setting up a meeting between you and one of those patients, to see what they say. Just a thought

Anyways, I hope you don't have it! But you should be prepared incase you do!

Feel better
Nathan

 

[xtine]

what really scared me is i asked my dr. if this could be anything else and he said 'yes, lymphomia' but also mentioned i would be a lot worse off. of course i'm worried about that now... especially since things have basically worsened over the last 2 months... but something would have looked 'off' in my blood tests right?? my blood tests were pretty good.

yes- i was going to ask my naturopath the same thing... i have known a few other people who have relied too heavily on naturopathic medicine and they're not with us anymore

i filled my entocourt today... i will start tonite... i sort of feel like a failure since i tired with healthy eating... i'll still keep that up but also take my meds.

 

[Gculk]

Blood tests are not reliable for this sort of thing. Have they arranged for imaging to eliminate lymphoma as a possiblity? That said, lymphoma, except in severe cases, or worseneing cases, is generally treated very conservatively.

How... Healthy were you eating? Alot of people here, eating healthy is bad news. Personally, for me, veggies = pain. 'Course I'm undiagnosed but whatever. Find what works for you, if it's chugging bacon grease, that's dinner.

Anyways, feel better,
Nathan

 

[xtine]

What sort of imaging would they have to do?? I just had an ultrasound because of my rib pain-- which btw, now feels like rib pain now hat some swelling is down. I do wonder why inhave rib pain-- and befor that I hurt my tailbone by just sitting on it-- so I am bruising easily?? Is that a symptom??

 

[Gculk]

Ultrasound is one, also CT/MRI are often used. What kind of rib pain have you got?

I don't know if you are bruising easily? Are you having abnormal bruising come up? As for the tailbone, just depends on you, I get a sore tailbone anytime I sit in a chair with no back.

Nathan

 

[xtine]

Yes- maybe I am just too active and I do have 3 kids so I am constantly getting mauled by them. I think I just need to chill- I react the every little thing. I don't know what else the doctors need to check befor I accecpt their diagnosis.

The rib pain felt achy and buring- more like a dull pain compared to a sharp pain. It hurt to lie on the side or to touch. It is a bit better today and is more locialized-- it feels tender to touch. I had it on both sides but was worse on the left.

 

[Gculk]

I'm not a doctor, but it sounds more like a soft tissue issue than anything, probably just a bit of inflammation in the soft tissue between the ribs, fairly common and no big deal. However, if you feel it is more than this, press your doctor about it.

Heh, if you're constantly being mauled, there's an explanation for the bruises. If it keeps up, and happens without explanation, I would worry, but if there's an explanation for the bruises I don't think you need to get too worried.

Nathan

 

[xtine]

Thanks Nathan- you are probably right about the soft tissue damage-- and possibly if I am a bit inflamed it would hurt worse.

Btw- what is your story? How are you feeling??

 

[Gculk]

Not necessarily soft tissue damage, just a bit of tendonitis or whatever.

I'm undiagnosed, I've had issues for about two years now, off and on.

Typically a mild-moderate lower right quarter pain with constipation, also have infrequent diarreah, and blood/mucus in my stool frequently when I'm in a bad flare. Right at the moment I'm feeling alright, had a bother last night at work, but doing alright now. Sometimes I flare really bad, but generally that's only once or twice a month, when I'm feeling at my very worst.

Hoping that it'll go away for a bit, till my GI appointment in October.

Nathan

 

[carrollco]

Accepting the diagnosis was hard for me even though I'd lived with symptoms for 20 plus years. They told me it was irritable bowel and that's what I wanted it to be. When the blood became an issue--for me a huge issue--I went back and got the diagnosis. After a stay in the hospital for sepsis, I got that Crohn's can be serious.

No one likes having a chronic disease. Especially active people. After each medication didn't work, I felt like a failure. Like it was my fault and I should have done something differently. Finally Humira became my buddy and I've never looked back. I've learned to accept that sometimes I eat the wrong foods and that sometimes I'm more tired that usual.

I have Crohn's arthritis that comes and goes. Sometimes my eyes dry out and become irritable and sometimes I get ulcers in my mouth. I have now developed back issues that related to Crohn's in some really weird way I haven't figured out yet. It's called spongi something. Since it's a recent diagnosis I haven't studied it as much as I should.

This forum was a life saver for me. It still is especially when I flare and freak out. You will meet some awesome people.

So welcome.

I'll keep you in my thoughts and prayers.

 

[xtine]

Hi All,

Just to update you.. my ultrasound of the ribs came back clear.. it's also starting to feel much better.. so i guess i strained it or something.. i'm still following up with my GI dr. in 2 weeks.

Hope everyone is well and thanks again for all your support!!

 

[Angrybird]

Thanks for the update, I am glad the rib pain is getting better

 

[TvolNbama]

Xtine, since this was posted in May of this year, you have probably learned by now that there are several types of Crohn's Disease. Also, you have likely learned that there CAN BE "extra-intestinal manifestations of the disease as well. It (your immune system) by way of Crohn's Disease can attack other areas of the body. The definition of the specific subtype of the disease is determined in part by the breadth of the attack, and/or where it affects your body. So, I understand the reluctance on your part to accept an initial diagnosis. A diagnosis of Crohn's can seem like an over shoot of what you feel you have. I have, at times, felt the same way during this year. Additionally, there were times that I thought I had to have had something much worse! Fortunately, I have a good GI doc, and Rheumatologist, and Family Practicioner. Together, I have been educated, and am being treated for the full spectrum of issues the disease has presented.

Before being diagnosed, we don't hear much about Crohn's disease compared to cancer, AIDS, heart disease, etc. And what we do hear is often ONLY focused on diarrhea, which in fact may or may not be a symptom of the disease for many of us. So, it is normal to question an early diagnosis of this difficult to diagnose disease.

I was diagnosed in March with Crohn's and weeks later, also IBS to add insult to injury. The flare was severe, and so extensive that I am not a candidate for surgery. They would have to take everything, because almost all of both the small and large intestines are involved. However, like you, I never had issues with diarrhea, beyond what would be considered normal for anyone. However, I did have severe bleeding for months, and shedding of intestinal lining, and mucus. That was scary, I don't care how sure one may be of a diagnosis, nobody should have to see such things in the toilet after they thought they had to go! I have had GERD for years, and this is also part of the overall picture. Reflux and strictures in my esophagus over the years make perfect sense now. Also, I have had severe joint pain, before, and even when the intestinal issues started to fade after a couple of months on Remicade. The joint pain persists even now, 7 months later, along with the fatigue and muscle aches.

Now, I did have to stop the Remicade due to back-to-back-to-back-to-back sinus infections, and a culture that showed mold in my sinus! (Not a good thing) So, off the Remicade I went, and ultimately off to surgery on my sinuses for the third time in 23 years. That surgery is now complete, and my sinuses are draining as they should. So, I shouldn't have the frequent infections. (Fingers crossed!)

I had to start over with the Remicade after the sinus surgery, and I am still having severe pain in my joints (ligaments and tendons, "not bone" says the rheumatologist ) and fighting daily fatigue, and muscle pain as well. It is a frustrating, and tiresome struggle, especially for someone who was an athlete in my younger days. But what choice do I have? It has been some consolation to know that I am not imagining the level of pain I have. Hearing that others experience the same helped me accept that I am not some exceptional case that was outside the box on some lonely island of disease. I thought I was losing it, because the pain can get so bad that I think I must be dreaming, and I have a high pain threshold. It has just worn me down in the past 10 months (since December of last year), and one can't help but have bouts with depression as a result of long-term pain and disease issues. Such has been my experience.

While my case of Crohn's was called "severe", I have seen others who have had surgeries, and think that they have it much worse. You say yours is "mild" by the estimation of the doctor. So, it is all relative to the individual. None of it is easy. One thing to bear in mind is that I had "mild" symptoms 15 years ago. Now, I have it bad. So, treating, and controlling it early is essential. Don't ignore it, because it WILL catch up with you, if the diagnosis is accurate. Personally, (knowing what I know now) I wouldn't gamble on it NOT being what the Dr. said, because the outcome from being treated is much better than having a severe flare if it isn't treated.

In retrospect, following the diagnosis, I was able to see that I have had the disease for over a decade. Clearly the colonoscopy back in 1997 that revealed a fissure was the first sign. The doctor I had in GA, back then, just said it should go away and if it came back, it would probably be worse. Well, it went away, and I wrote it off to stress, as I was going through a divorce, and the stress was out the roof. It took a severe flare 15 years later at age 47 to get a diagnosis! Now? Well, so many things make sense about my health that I didn't understand before now. It is funny how clear things can be on the other side of an accurate diagnosis. Hindsight is always 20/20. Right?

Battling an auto-immune disease is a unique battle for an individual. You may find one, or two people who have a similar experience as you, and then again you may not! Just don't get hung up on the fact that you don't have what some consider "traditional symptoms", or that another person with the same diagnosis doesn't have the same experience as you. Reading too much of the wrong thing on the Internet is dangerous as well. Get the less invasive treatment while you can, if you can. That is the best way to rule out other diagnosis, and prevent worse things down the road.

There is no cure for Crohn's, but symptoms can improve with time, and it can be brought under control. In my case, the Remicade turned the intestinal issues around in a couple of months. It didn't happen over night. Yet, the battle isn't over, and likely won't be for the rest of my life.

For now, I have to look back to March of this year to see that I have improved, even if things seem difficult at the moment. There is no quick fix, and I continue to have questions, and seemingly new issues to address every month. Like Lupus, Crohn's can attack multiple places in the body. Though not as extensive in it's targets as Lupus, Crohn's is a disease of the auto-immune system, and NOT a disease of the stomach regions as many tend to think. I have to keep reminding myself of this fact. It isn't limited to my gut. It has advanced into my joints, and my hope is that this too will pass with continued treatment. Again, what choice do I have?

In short, don't take the early, initial diagnosis with a grain of salt. What may be "tolerable" for now may be horrific in a few years. Trust me on that one! My story isn't over. I'm taking my meds, and getting the infusions of Remicade, now. I WILL have something of a normal life, because I am determined to do so. Acceptance is the first step to getting better, and feeling better about the outlook tomorrow.

It takes support from others to get through it all, and stay sane. Staying away from the crazy websites is the other crucial need you should know about! The ones that claim "cures" and "remedies" and "diets to cure, and treat" Crohn's are a crock of garbage. It is an auto-immune disease. Let that sink in to your collective thoughts. If you are fortunate to be diagnosed with something a doctor calls "mild", then be thankful, and get the treatment before it becomes something bigger down the road.

In the mean time, for myself, I will keep close watch over my symptoms, and I will not let the disease take all of my joy out of my every day. I have too much that I want to do, and still many places to see, and see again. Also, I have grandchildren, and that is a great motivation to not get complacent with just "getting by". I like the way Mark Twain put it, "Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover." And to that I would add, "and LIVE!"

I do hope you find your way back to health, and peace of mind. All the best to you and yours.

 

[David]

Thanks for that post TvolNbama and welcome to the community