Newly diagnosed

[Mandy Gail]

:ycool: I am 35 and I have just been diagnosed with crohns disease. I went to thr er for stomach spasms. They did a cat.scan and told me to go see a GI in 2 weeks. From there the gi put me through the procedures necessary to figure out what was going on. They finally did the capsule test. Turns out I have ulcerations all through my small intestines to my ileum. I am currently taking lialda and have prednisone for emergencies. I eat by the rules that the website at the gi.center gave. I still feel super fatigue and have soreness and cramps. He didnt give me.much other information about it. I would love to hear from someone with the similar type of crohns so that I can learn more about what to expect, what a regular feeling is, and maybe what is done to monitor my condition to know when om good or when im bad, seeing as how it wasnt easy to officially diagnose. Any suggestions or advice is welcome....thanks

 

[mickey]

Read up as much as possible and pay close attention to your symptoms, what you ate/drank did that day and see if you can determine any direct correlation. Everyone has different triggers, the key is to eat healthy, drink/eat healthy and stay on top of your health. Good luck!

 

[Angrybird]

Hello and welcome to the forum :bigwave: With this disease there is no rule to follow and we are all different with how it behaves so whilst we could say what we experience that does not necessarily mean you will too, definelty have a good nosy around the forum and there is plenty of info here on what to look out for and the treatments used. Having no symptoms at all is in my opinion remission but if you start to experience anything problems with pain, a change in BM's or anything that is not the 'norm' then get onto your GI doc/nurse. How are you doing at the moment?

AB
xx

 

[Mandy Gail]

I have constant pain in my lower right side, I am super fatigued, and I have very bad heartburn. I only had the stomach spasms the one time and now I have this. And the,fact that its ulcerated is what has my doctor concerned. Of course he,doenst really tell me much about future plans or anything. its more like,well just take this medicine! I dont know, all of it stresses me out and confuses me. I am happy to find a forum that I can at least try to decipher what other people have experienced.

 

[allieinwonder]

Hello and welcome to the forum! I agree, there really isn't a set list of foods that you should stay away from, everyone is different! Start keeping a food diary that lists what you eat and how much pain you are in, and that can help you figure out what trigger foods you need to avoid.

 

[Angrybird]

Hi, it may take a little while for the meds to kick in hence why you are still having discomfort, how long have you been on the lialda? Are you taking the pred at the moment?

 

[Mandy Gail]

Ive been on lialda for a couple of months now though I wasnt diagnosed until last week! I was on nexium as weel until he did the capsule test and made me stop that and vitamins. I havent started the pred pack since I dont know if this is,what is considerdd an emergency. I know my lab showed i was anemic so I was hoping to get something for that. Right now its just lialda.....and its not fixing my symptoms.

 

[polar1920]

Hi
Just like others have said, keep a food diary and see if there is a link to what you eat and your symptoms and hopefully your meds will start to kick in and you will start to stabilise.
It is hard when you are first diagnosed, taking in the diagnosis and trying to understand everything. I think this forum is brilliant for information. Keep yourself informed, it really helps :ysmile:

 

[Dunbar]

Welcome. You may find that once your anemia is addressed the fatigue will lessen. As has been said it is different for everyone and once you're alert to foods and how they make you feel you can adjust. It's a process. Make use of all the fabulous people on this forum, anything you want to know can be found here.

 

[David]

Hi there and welcome to the forum I'm so glad you joined!

I don't think you're going to like what I have to say but it needs to be said. You stated that the capsule endoscopy found ulceration throughout your small intestines. Well... unless there is some new formulation of Lialda that I'm not aware of, then you may have been given the wrong medication. Lialda is formulated for release in a manner where it treats colonic inflammation which is why it is effective for Ulcerative Colitis and sometimes Crohn's Disease (prescribed off-label) located just in the colon. It isn't surprising to me in the least that you're not feeling better. I'd call your doctor ask them why they are giving you a medicine for colonic inflammation. Maybe he has reasoning I don't understand.

Oh and "prednisone for emergencies" given to a new patient who doesn't understand their disease is... an interesting decision. What dosage did they give you and how did they tell you to take it?

In addition, that fatigue you're feeling is potentially from:

1. Your anemia. This likely needs to be treated.
2. I suspect that you're deficient in vitamin B12. Have you had your vitamin B12 levels tested? If so, what were they? If not, get them tested and get the actual number and let us know what it is so we can provide you with additional insight. Get your vitamin D and folate levels tested while you're at it.

We're here for you.

 

[Mandy Gail]

I was given 4 mg of prednisone as a dosepack. Start out with 6 pills and work down to 1. Its a 6 day supply. I take 1.2 gms of lialda 2 times a day and it sucks. Ive been on it for a couple of months. See, tjat is what I dont understand....even the med pamplet tells u the lialda is for crohns of the colon or u.c. And I have neither. He mentioned changing me to colora? If the lialda doesnt work. I have not had b12 or anything tested other than lab stating that my iron level was low. That was the lab I had to test my sacc and determine whether it was u.c. Or crohns. This whole ordeal is so frustrating for me! I dont feel good, dont feel like im receiving proper treatment, and it has cost me thousands of dollars already and I have good insurance! It is taking a big toll on my emotions, my health, and pocket! Im here because I am desperate to learn about this disease and try to help myself the best way I can.

 

[David]

I'm not familiar with a "colora" medication, sorry. Maybe Colazal?

If you don't feel like you're receiving proper treatment, you may want to explore getting a second opinion from another GI. This is a chronic disease and you need to find a GI you can trust and there ARE many great ones out there who will do you right.

I'm sorry to hear about the financial hits. Many of us feel your pain

You absolutely want to get those vitamin levels tested. And do you have the specific results from the lab? We might be able to provide you some insight there as well.

And you're very smart to learn as much as you can about this disease. It's a steep learning curve but we're happy to help you every step of the way. Read read read and ask as many questions as you want.

*hugs*

 

[DustyKat]

Sorry to contradict you David but Lialda (Mesalamine) is used for mild to moderate Crohn's located in the small bowel but more particularly in the terminal ileum as that is where the active ingredient begins to be released. It is certainly a treatment that the GI has on the back burner for my children should they require it.

Dusty.

 

[David]

Nothing to apologize for Dusty, I want the correct information presented and dialogue like this is wonderful The studies I have read show that initial disintegration of radio labeled Lialda occurs between the middle of the small bowel and the ascending colon and complete disintegration occurs between the ascending and descending colon as Lialda is formulated to be released by pH and everyone's gastrointestinal pH is a little different.. Point of initial disintegration does not necessarily mean that is where efficacious treatment begins, especially since the whole idea behind Lialda is prolonged release throughout the colon. Nowhere have I read that it is indicated to treat the small bowel nor have I found any studies or papers showcasing its efficacy or potential efficacy there. Can you source me for that please?

In the meantime, I stand by my assertion, especially for someone with, "ulceration throughout the small intestines to the ileum".

 

[Mandy Gail]

Ah, colazal is it! I was close haha! I have set an appt for today since I missed yesterday and still dont feel well. Im having pains in my chest too like when u have bad indigestion.......the money part is ok but id like to see some positive results for what ive had to pay, I know its part of it and wishful thinking. Im for sure going to ask about the vitamin testing! And if u want to send me a good private email address id be glad to send you a copy of my lab results!

 

[David]

Ah, colazal is it!

Your doctor sure likes the medications indicated for colonic inflammation, doesn't he? Colazal is a lot like Lialda.

While you're getting all this sorted you may want to look into enteral nutrition to help calm things down.

 

[Mandy Gail]

Question, the Ensure Plus, have you known that to be a good source of nutrients? i have thought about that and gatorade. i cant have sodas or juice that contains pulp or anything! I dont care about the soda part anyway.....My doctor is not my fave and i swear i have been sketchy about taking the meds that he has given me due to lack of indication that any of it is used to treat my particular type of Crohns. I am glad to hear someone else say it! I have always been taught that doctor knows best!

 

[David]

Ensure Plus can be a good source of nutrients but I'd suggest reading threads and asking questions in our enteral nutrition support forum as there's some very smart and experienced people in there.

You should always take your medication as prescribed! Sometimes medications are prescribed off-label as doctors have found them to be useful in ways that aren't indicated. Now, how Lialda is being used in this case doesn't make sense to me based upon everything I've read, but that doesn't mean I'm correct. It's absolutely imperative that you communicate with your doctor. If you don't feel comfortable with a treatment plan or have questions about the reasoning, ask until you are comfortable or something changes. If the doctor won't answer your questions so you feel comfortable, THAT is a good sign that you need a new doctor. But it's not fair to them if you don't communicate

 

[Mandy Gail]

oh yes, i take my meds as prescribed, i meant i missed work yesterday...not sure if that was what you interpreted from my all over the place statement earlier! I am going to see him today and since i started this forum i have written down several questions that i feel need to be addressed, like what is the game plan and how will this be monitored ha.

 

[David]

Ah, I interpreted your being "sketchy" about taking your meds as to mean you didn't regularly take them as prescribed. Sorry about that!

Please let us know what the answers are to your questions you feel comfortable sharing so we can all learn as well.

 

[Mandy Gail]

i will let you know! and i am Sketchy, not always Stupid hahaha had to joke a little, i am big on laughter, it soothes the soul....

 

[Mandy Gail]

Well doc said that I am staying on the lialda and said that its what I need for now :/ he also said that he wont send me to have my b12 and other levels checked for 6 months then every six months from there. He put me back on nexium also. I still ache all throughout my stomach abdominal area.....he said take the trac of prednisone. um I think thats all....kind of not what I was hoping for and may be checking into seeing another doc for med advise. Any suggestions?

 

[David]

Did he explain why:

1. He feels Lialda is the best choice.
2. Why he won't test you for deficiencies now

 

[Mandy Gail]

He said he likes to give the meds time to work before treating me on top of the crohns. And as fir the lialda, he seems to think its better for inflammation and as a preventative for other issues that may develop. Im not sure, hes brief and sometimes it doesnt make any sense to me.

 

[David]

I see. Well, if you're not comfortable with the level of care you're getting, then get another opinion. If you're ok as is, that's your choice as well Either way, we're here for you.

 

[DustyKat]

Hey David,

I totally agree with you about it efficacy and it certainly is a drug that is far better suited to treatment in the large bowel. My only intention was to point out that Mesalamine is used by some in the treatment of Ileal Crohn's even though indications state it is for Ulcerative Colitis. I apologise if I confused the issue by speaking of the generic drug Mesalamine...

These compounds can be targeted to sites along the gastrointestinal tract. Asacol, for example, is coated with a pH-sensitive acrylic polymer to release the 5-ASA in the distal ileum and colon. Sulfasalazine contains a sulfa group chemically bound to the 5-ASA group. The 5-ASA group is released in the colon upon digestion from colonic bacteria where it may treat Crohn's colonic inflammation. There is some evidence that the entire sulfasalazine compound may also have anti-inflammatory effects and sulfasalazine has also been used to treat psoriasis and arthritis. Balsalazide uses the same principle as sulfasalazine. It has an inert compound chemically bound to the 5-ASA group; the 5-ASA group is similarly released upon digestion by colonic bacteria. Balsalazide and 5-ASA coated therapies have an advantage of generally fewer side effects compared to sulfasalazine, and the non-sulfa compounds can be used in patients with sulfa allergies. Pentasa is made up of coated granules that have greater release of 5-ASA in the ileum as well as the colon and hence is often preferred for patients with ileal Crohn's disease. Rectal and sigmoid colonic Crohn's disease can be treated with 5-ASA enema and suppository therapies.

http://health.usnews.com/health-conditions/digestive-disorders/crohns-disease/treatment

As 5ASA is released in the ileum, the use of mesalazine for Crohn's disease affecting the ileum has been investigated over the past few years. Recent research suggests that it may have some effect, both for the treatment of mild attacks and for preventing flare-ups in those whose disease is inactive, including patients who have recently had surgery. However, it is much less effective than steroids in active disease and the preventative effect is less than that of 5ASA containing drugs in ulcerative colitis.

http://www.nevdgp.org.au/info/gastro/Drugs_IBD.htm

...as far as I am aware the only slow release form available in Australia is Mesasol.

Is it an effective drug for active small bowel disease? On its own I don't believe so. Studies indicate that antibiotics are just as effective. If Mesalamine is used in conjunction with steroids for uncomplicated disease and/or after resection then the results are more promising....

Antibiotics
Antibiotic treatment has been used in Crohn’s disease despite the fact that microbial agents have not been identified as specific etiological factors. Metronidazole is the most commonly used antibiotic and its efficacy is comparable to sulfasalazine. Metronidazole has been effective in treatment of perianal disease and has transiently reduced recurrence of the disease process after ileal resection. Ciprofloxacin has been as effective as mesalamine in mild to moderate Crohn’s disease and has been used in combination with metronidazole for ileal and perianal disease. Studies of combination therapies with antimycobacterial therapies in Crohn’s disease have been inconsistent in terms of their effectiveness for active disease and maintenance of remission.


Steroid Drugs
Adrenocorticosteroids (e.g., prednisone 40–60 mg/d), in combination with other anti-inflammatory drugs (e.g., sulfasalazine or mesalamine), improve symptoms in over 75% of patients who are treated during the first 4–5 years of uncomplicated disease or during a post-resection recurrence. Patients with predominantly ileal involvement are the most responsive.

http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Cat_ID=AF793A59-B736-42CB-9E1F-E79D2B9FC358&GDL_Disease_ID=291F2209-F8A9-4011-8094-11EC9BF3100E

In my children's case it may be used post operatively as a back up to Imuran if indicated.

Dusty. xxx

 

[David]

I apologise if I confused the issue by speaking of the generic drug Mesalamine.

Ah, that's where the problem arose. As you know, Mesalamine has many formulations that allow for its release in various areas of the gastrointestinal tract. Lialda is specifically formulated to target colonic inflammation. There are of course various forms of Mesalamine that target small bowel Crohn's and would be a far better choice That the OP is on Lialda is a head scratcher for me based upon where she has stated her active disease is. The difference between a Pentasa and a Lialda are night and day despite the same active ingredient (Mesalamine).

I unfortunately haven't found a Lialda versus other formulation paper, but here's an interesting one for Pentasa versus Asacol.

 

[archie]

Hi I think you have been treated appallingly. First to be told you have crohns with little explanation and then told you don't need bloods until the meds have worked. I'm sorry but you need baseline results so you can compare how can he tell if the meds are working if he doesn't know what your levels are to start with.

I work in the health profession and we are always taught that patient education is of utmost importance. I know they're busy but that does not explain diagnosing someone with a chronic illness and leaving it at that. Can your GP take your bloods? Do you have access to an IBD nurse?

I too knew very little when I was first diagnosed but this forum is a wealth of information and there's not one question you can't ask. It's your health and you have to take charge don't leave it to the docs if your not happy seek a second opinion or quizz the hell out of your current GI.

Do you have someone to go with you for appointments I always found a second set of ears useful. Hope you feel better soon it can be frightening at first but you'll soon be on here advising others.

 

[kbaker]

Hi Mandy
I have just joined this sight so I am new to this. I am 48 years old and had my first resection for Chrohns Disease when I was 16, so I have had it for a long while with many ups and downs. Over the years I have found that is so important to have a great Gastro (that you are comfortable with) and most of all a positive mind. I have had days feeling sorry for myself and feeling quite ill and the next day slapping myself to snap out of it, so I learnt a long time ago with hospital experiences that I am fortunate. Chrohns can affect all of us in so many different ways and we can all have different symptoms. What I found was that when my Chrohns was active, acidic foods caused me pain. But I have known others to have problems with dairy, and some with spicy, which never bothered me. I have always been defficient in B12 and Folic acid and suffered from lathargy. My belief is that you should get the tests for these as I feel so much better after my B12 monthly injection and folic acid tablets.
I feel lucky, I look normal, (well sort of), eat what I like with no weight issues, Yippee! Work fulltime in Real Estate, and have 2 children daughter 21 and son 24 and a husband.
You will be under a Gastro for a long time so make sure your relaxed and comfortable with him/her and that you can get in contact with them if needed at anytime.
Take care and I hope you feel better soon
Cheers Kathy

 

[David]

then told you don't need bloods until the meds have worked. I'm sorry but you need baseline results so you can compare how can he tell if the meds are working if he doesn't know what your levels are to start with.

I agree 100% I was just in a diplomatic mood

And considering how common B12 deficiency alone is in Crohn's Disease patients and that damage can sometimes not be reversed, I'm dumbfounded as to what is going on. WHY would a GI deny someone such tests? It makes zero sense to me.

 

[Mandy Gail]

Thanks everyone or their advise and info! I am going to another doctor on monday. I just dont feel god and dont feel like he is educating me enough. I am already on a super strict diet too. But if there is severe ulcerations and inflammation, wouldnnt I need something to help that heal? Part of my frustration is that I dont even know fully about maintaining my health! I am hoping that the new doctor will provide more insight and maybe even help me with meds and even nutrients. My doctor is highly rated in our area and maybe he works good for some people, just not me.

 

[David]

I'm glad you're getting a second opinion. Maybe the new doctor will agree completely with the old treatment plan. But from everything I've read and how you've described your disease manifesting, it doesn't make any sense to me.

 

[David]

Mandy sent me her lab report which showed the anemia she was already aware of. However, due to one other issue we decided I'd post about it in the open forum in case it was of benefit to others. She also had an Anti-Saccharomyces Cerevisiae Antibodies test (ASCA) done which came back positive. The problem with this is that a positive result for this test correlates with the potential for more severe disease with complications such as stricturing and possibly perforation. As such, that, in combination with how well Mesalamine is shown NOT to work for Crohn's Disease further reinforces my opinion that her treatment regimen is lacking and she should seek another opinion.

 

[Mandy Gail]

Went to a new doctor today and I must say I am surprised at the differences of each doctors recimmendations. New doctor prescribed me pentasa, stop the lialda, put me on flagyl for 3 weeks, a probiotic, multivitamin, b12 supplement, calcium, nexium still, and low residue diet. He also has me ordered for lab work immediately! He said had I been on only lialda, I would be in surgery before I knew it. I am thankful for this forum and david, u are a godsend! I am looking forward to better healthand happiness!!! Thanks everyone!

 

[David]

That's awesome that someone was able to fit you in so fast! Yay!

When do you see the doc again? Do you know what new tests he asked for? And did he look at all your old reports?

 

[Mandy Gail]

I showed him a copy, however I am bringing him an official copy of everything tomorrow. He has me down for july as my next appt unless my labs are not good. Lab will include: basic metabolic panel, liver function, cbc w/differential, SED, iron, iron IBC, Ferritin, and Transferrin. I will have this done probably wednesday! I guess after he studies dr meahs info he gives and reviews the lab work he may change meds. I am excited and pray that the new meds work!