Just diagnosed and feel very alone with it, need some help please.

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Amie

Joined
Jun 13, 2012
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Hi all, I was diagnosed just over a week ago with crohns and don't feel like I've got much support from my GP or consultant. I wasn't really told much about the condition or what to expect, I was just told to take some medication and come back in 6 weeks. I have been put on pentasa and entercort but so far have felt worse not better. Im in constant pain and find it difficult to walk or even sit down. Is this normal? Is this what it's going to be like from now on because I'm finding it a struggle to cope and feel like I can only find answers on the Internet (although sometimes this is confusing). Any advice would be greatly appreciated,

Thanks, Amie :)
 
Lol, you expected support from doctors? You haven't been feeling unwell very long, have you?

:ylol2:

Just kidding. Anyways, that's what the forum's here for. I can't really give you much advice, I'm in the undiagnosed boat. About all I can do is give silly moral support like 'keep on truckin!'

Someone else will be coming along soon enough to tell you the rights of it. All the advice I can give, from my experience (2.5 years, 3 doctors and no answers), is don't expect doctors to have sympathy/support/your best interests at heart. Expect them to do exactly what they want, when they want it, and be prepared to have to push for yourself.

Sure it's not the encouraging advice I'd like to give, but it's what I've got, and just wanted to let you know it's par for the course to have docs that at best seem indifferent.

Best of luck to ya, and hope the treatment does ya wonders
Nathan
 
Hi Amie! Welcome! Sorry that you feel alone. I can relate bc when I was diagnosed my doc said pretty much nothing and sent me on my way with prednisone. He told me to come back in 6-8 weeks. That's it!? I sat there dumbfounded! All I knew about crohns was that it is painful and I couldn't stop running to the bathroom. And that it is a pain in the ass( no pun intended) to get a clear diagnosis. The prednisone didn't help me, but it does help lots of people. I was put on remicade and it took a few weeks for my symptoms to get better. I still had some stomach pain, but not nearly as severe. So from experience and what I have read on here it could take a little time for them to help. I stayed in remission for 4 years, but I recently have started having symptoms again. I didn't stay on maintenance meds bc I had no health insurance. I dont recommend stopping meds unless the doctor okays it. I will have another colonoscopy next month. I started seeing a new doc bc my old one retired. She has confused me about the validity of my original diagnosis, but that is a whole other issue. I haven't been on the meds you are on, but I hope this helps some. I hope you feel better soon.
 
Welcome, Amie :)

I was just diagnosed as well (last week), and am feeling the same as you. My doctor also seemed pretty vague about the diagnosis and has started me on Entocort only, which I started today.

It's true that you'll probably have to take control of your own health when it comes to this, especially because everyone reacts differently to treatment. From my research so far I've realized that in most cases it takes a lot more than just medication to fight this. Right now I've upped my supplement intake, and am making some major diet changes. Also lessening the stressors in your life, if possible, may make a huge difference. Hope this helps, feel free to message me if you'd like to talk more. :)
 
First off, welcome to the site. You're definitely not alone. As you read more and more posts on here, you'll see many people are/were in the same situation you're in. Your situation is almost identical to mine. My original GI ran tests for months without giving me any meds to help while I continued to lose a considerable amount of weight. Luckily, I found myself at a Crohns informational meeting (I recommend them) talking to an awesome GI doctor and others who suggested that GI's office. Since then, I've been put on medicine and am moving forward(but slowly) but in less pain (thanks to anti-spasm stomach meds). I've basically taught myself what I should be doing and how to deal with this through the internet - like you said. Some suggestions - join a support group like this one, they help a lot. Look up what's helped other people on here (low residue diet, smaller meals more frequently, low stress, exercise, vitamins, Ensure/Boost drinks, etc.). Don't forget to listen to your body. Lastly, remember, you're not alone. I wish you the best of luck.

PS, when I find myself in a down mood, I scroll through the humor sections on here :). Some of them are hilarious.
 
hello and welcome to the forum. I was DX with Crohn's 5 years ago and I just joined the forum looking for what we all want. SUPPORT. This site has helped me so much, I don't feel so alone. I would consider finding a new doctor. Someone that can explain what is happening to your body and help you control it. If my doctor just gave me a bunch of pills and said come back in 6 weeks I would never go back. I might also suggest going to a dietitian, I did when I first got diagnosed. Like I have said in several other posts, everyone's tummy can handle different things and its going to be trial and error for a while, but the dietitian can at least point you in the right direction. Crohn's can be very overwhelming and scary, but on this site you don't have to do it alone.
 
Hi Amie - Thats English doctors for you, I'm in the same boat, I was diagnosed last month after a Colonoscopy, given Prednisolone and was told I would get a letter for a follow up appointment with the GI Specialist (which isn't until the 25th of this month) you end up stuck in limbo not knowing what exactly is wrong with you - the poxy NHS is useless at times!
It is confusing reading all about it on the internet but at least you'll be able to educate yourself and make a list of all the things you want to ask the doctor when you see them again! I've found that thiss website and Crohns and Colitis UK are really helpful with all the information - but I will say that what applies to one person may not apply to you because I freaked myself out reading about surgeries and things lol.
I can't give advice about the pain side of things and what your medication should be doing because I haven't got a clue but i'm sure someone will write on here to tell you soon :)
Feel Better!
 
Hello :)
I am relatively newly diagnosed aswell (2 months) and I am taking Pentasa, but this medication is definitely not working and I am waiting to get it changed.
I felt exactly the same as you did. Google 'Crohns and Colitis UK' they are the most reliable sources for reading and they can send you hard copies of the literature aswell as just reading them online, they have advice to send to employers, other staff, teachers (if you're a student) loads of advice on foods and diet, and medication, loads of stuff, they've been great! and this forum has been a life-saver. I was nearly going into depression when I was diagnosed as I felt like my life had stopped and I couldn't do anything, and Crohns is a big lifestyle change. I was told last night that the first year is the hardest, and you're gonna have good days and bad days, we all do. I can't wait to get my medication regulated and get back to some sort of normal.
I hope you're doing okay, use this forum.. and the Crohns and Colitus UK page.
It will help. and I know it sounds cliche but it does get easier once you get your mind around it.
:)
 
Doctors help people? Myth busters should put this to the test.
Doctors don't tell you much because the truth is... They don't have a clue.
No-one completely understands the mechanics behind crohns disease.
This forum does help because you get a lot of answers from what's discovered from others.
I wasn't diagnosed with crohns although I kept getting tests come back suggesting it may be the case..
Basically how a GI determines crohns disease is from biopsy or sometimes there is enough evidence for diagnosis without having to wait for the biopsy eg: patchy inflammation etc.
GI's still don't understand why certain areas affect some and not others.
There seems to be a link from crohns patients "majority" to have MAP bacteria - gram negative pathogen.
Other pathogens mimic crohns disease symptoms which should suggest quite easily that a pathogen is responsible.
Some say that crohns is more complexed than that however I disagree and agree with the MAP theory.
Some use prednisone, remicade, anti-imflamitory agents, multivitamins etc
Eating healthy has never cured anyone from disabilities however it has suppressed symptoms in some diseases.
I'm sorry to hear you have been diagnosed.
I hope you find a good GI to help you understand more about the disease and best treatment.
 
Hi all,
Thanks so much for your words of wisdom and encouragement. I obviously have a lot of reading to do about the condition and need to get better patience in waiting for my meds to start taking affect. I think I was being a bit naive in thinking the meds would be like when you take a course of antibiotics and would just take a few days to get in my system and take affect, sometimes I wonder how I'm a teacher :)

Holly - you've described exactly how I'm feeling at the moment, like my life is on hold until I can get this under control. I've not been able to work for the last month because the pain and discomfort has been so bad that I can't move about much and can't drive. I've pretty much been housebound and feel like a pretty rubbish mum to my 3 year old lately as I'm not fun, playful mummy anymore. I really hope you get your meds changed soon and feel a lot better and that we'll both be posting messages soon about how much more positive things are. Take care, Amie x

Sophie - thanks for advice, I'm definitely going to make a list for my next GI appointment, think he will be glad when the appointment is over :)

Orange leprechaun - thanks for your post, I'll find out about local support groups and check out the humour section, I can definitely do with a laugh right now!

Lovely jess - thanks for your message, it seems a lot of people make changes to their diet and take supplements. I think I need to look into it more and see a dietician like others have suggested. I hope you are doing well being newly diagnosed, let me know how you get on.

Nathan - thanks for your message it made me smile and your moral support did make me feel better :) I really hope you get some answers soon too and you feel much better!

To anyone I've not mentioned personally, thank you again for your advice and I hope you all continue to feel healthy and happy,

Amie xx
 
Hi Bev,

No I haven't had any tests other than blood, urine and MRI. The results of the MRI showed the last part of my small intestine was narrowed and ulcerated, so the GI said it was crohns.

Can I ask what do you (and anyone else reading this) take for pain relief as I was taking co codamol prescribed by my GP before they made their diagnosis, but I looked at the leaflet (and online) and it says not to take if you have crohns. What can I take? Paracetamol doesn't help and I'm in agony. Went back to GP and he said there was nothing he could do for me and if the pain is that bad I should go to A & E. I didn't know what to do!

Amie
 
Amie, for pain I have Vicodin. I don't know what it is over there (I live in the US). Also, The Pentasa is more of a long term medicine that I don't think you see results from right away. The Entocort should be faster as it is a steroid. Entocort did not work for me, but only because I had side effects I didn't do well with (increased heart rate and I also have panic disorder, so that's no good). Prednisone always works for me, but it has more side effects and I believe more severe side effects. But everyone responds to the medicines differently. Entocort is designed to more specifically target the portion of your intestines that needs the steroids.

Sometimes after starting a course of steroids I feel better and see improvement right away, other times it takes longer. It varies and I haven't found any correlations on what may cause either instance.

That is really crummy for your doctor to just send you away with a checkup time. Call the doctor that ordered the MRI and gave you the diagnosis. Tell them that you cannot function through the pain right now and need something to bridge from now until the other meds start working (ie prescription pain meds). Whoever diagnosed you should be very familiar with the pain that accompanies the disease and know darned well that it is pretty impossible to function through a bad flare.

I've recently been really down about my own doctor. It is disappointing. Keep your chin up and ride the wave though!
 
@ ThatsWhatSheSaid - I'm taking Hyoscyamine (dissolves under the tongue). I'm taking it because I get stomach pains / spasms after eating (non-low residue foods) and later at night (2-3 am, therefore affecting sleep). Sometimes the spasms were to the point I can put my palm on my stomach and feel them and the pain was to the point I was laying on the floor in pain. My diet was down to about 7-10 items (including toppings). My new GI told me she wanted me on a more complete diet (even if it means getting the D). I said not without meds. The spasm meds help me eat and not be in pain after. I'm willing to try more stuff now and am getting much more nutritious food in me. Also, I found that if I don't take the pill before eating, I get D and/or getting worse. It's not perfect but it's a HUGE help.
 
Orange- that's really interesting. I always feel that my intestines are spasming/contracting even though I don't have any evidence of it. I do have evidence of upper GI/esophageal spasming as when I throw up, I can't stop. It's like the muscles won't stop contracting. I have to sedate myself to stop throwing up and even then I still often end up in the ER for fluids.
 
To add a little more info, my first GI had a pretty good explanation for the stomach spasms. He said that the stomach muscles have pain, which causes them to tighten, which causes them to spasm, which causes them to have pain, which....well, just follow the cycle until the pain gets unbearable. The meds stop the pain/spasm early early on so it's almost not noticeable. There might be other meds for it, but that's just what I'm on and it works for me.
 
Sorry to hear about your diagnoses. As you can see your
Not alone. When I was diagnosed with chrons 34 years ago we didn't have the communication technology we have today.
Find a local support group for chrons and uc. That's the best source for Dr in your area.

It can be a tough road at times. Hang in there.
 
I wonder if any Doctors/GIs ever read these forums? What a concept. Maybe they would understand the unanswered questions we all go home with. Then again, maybe they don't want to know - might make the job harder to deal with...hmmm. I too feel alone many times. Unfortunately, I have a spouse who is a "suck it up" kind and how bad can it be" and "I have diarhea every now and then too" or "did you ever think it is all in your head". Sorry, bit of venting there. Thank god for my little dog...she is always there to comfort me :)
 
There is nothing like a dog. I swear sometimes my dogs are better than most people. And I'm not even a super-weird anti-social like-animals-more-than-people-person or anything. There is no comparison to the unconditional silent love and affection of a canine companion.
 
Hi Amie I too Feel alone I went in with appendicitis and came out with Chrons and a promise of an appointment. I was ill again and admitted once again and then sent home 2 weeks later and was advised I would be seen in 4 weeks. that's was in Feb and then an appointment arrived for july I have private insurance but because the NHS diagnosed chrons after an emergence admittance they wont cover anymore investigations . If you suffer from Chrons with D there is plenty of advise on this forum. One thing I recommend , dont suffer if you really feel ill go straight to A&E its a fast track to see your Chrons specialist . just be persistant Good luck for the future
 
I just wanted to say that there are *some* GP's and doctors out there who do care! They do exist! There is hope! I am also new to all of this, but not new to the health care system by any means. I am so lucky to have an AMAZING GP but it took a while and she was hard to find. I am not sure what it is like in other countries but I found her by asking friends, advertising on facebook that I was looking for a new GP, googling, signing up for as many wait lists as possible, and meeting doctors to see if we were a good fit. A good chunk turned me down because I was "too complex" for their practice, but eventually my current doctor took me on and I can't believe what it would be like right now if I hadn't found her. It took two years, it is hard, I am not going to lie - but it is possible and once you find one it is SO worth all of that work!

Being newly diagnosed with anything sucks. There is a steep learning curve but you will figure it out and soon be a pro at navigating the health care system. My best advice is to learn the language. Learn what all of the tests are, the meds are, what your anatomy is like, and depending on how interested you are learn about the disease processes and what is going on inside you - both in plain language and in "doctor language" speaking their language will help you know what is happening more!
 
I was diagnosed with Crohn's disease 13 years ago, and I still have more questions than answers. I know exactly how you feel. I have to make my doctor give me certain tests, and getting an appointment takes an act of congress. My advice is to be a "squeaky wheel" It took me until this year to learn that. This forum is also loaded with tons of great information and support. I don't feel embarassed to ask questions in here, and I can whine and complain all I want. I do a lot of self-pitying! LOL! I am currently on Humira, Pentasa, Entocort, and Potassium, and I am sure the doctor will change my meds when I see him Wednesday. I have pretty much tried everything at one point or another. Crohn's is different for everyone and it is a trial and error trying to figure out what works for you. Just be persistent, and don't give up.
 
Hey Aime. I'm pulling for you! Remember that you're the only one there for yourself, 24 hours a day. Be strong.
 
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Hi Aime, I also went in to a & e, got diagnosed with appendicitis, hospitalised released a couple of times before getting diagnosed. I made the mistake of living with the pain and just staying really still suffering it while it got worse. This isn't always the best path to take as it can let the inflammation, scar tissue, abcessed etc get more serious. I ended up with major surgery and a resection within weeks of my diagnosis possibly because I didn't act earlier and get to a&e. So please don't live with increasing pain, take it to a&e and don't be afraid to tell them it's getting unmanageable. Your body becomes very run down and that will make your recovery harder once you get the right treatment - which I'm sure you will. So shout if you need the help . take care
 
I am sorry you are dealing with all this. I have not been Dx yet. I am working with my GI doc right now. He is certain I have IBS and wants me to try a couple different meds. I am in pain ALL the time. I usually do not have the diarhea, but yesterday morning and today I have had the diarhea( not water, but like mush). I can see how it can get frustrating. My GI does not believe in rushing his patients through tests as he says they have risks of their own. I was given elavil to try and I see him again in a month. I will say that if I am no better I am going to ask to have some tests. I am not sure about diet. I was already on a bland modified diet when I got sick so not sure about the whole diet thing. I am sick and in pain no matter what I eat. I have been chronically sick for the last 9 years with other health issues so I have been to many many doctors, even the Mayo clinic. I will tell you this, DO NOT expect to get miracles when you go to the doctor. Alot of them do not even know how to help you unfortuantely. They do not even know the cause of alot of these dieases so they will not be able to find a cure. It is all trial and error, and usually on your part. You will have to be your own advocate in this. This is the case in anyone who has a chronic illness of any kind. Each person is so different and what works for one will not always work for the next.

Hang in there, you are not alone..
 
I'm so sorry that you are feeling this way. I too was just diagnosised (3 weeks ago). I know how overwhelming and scary this all is. Luckily, I've had a lot of support from both my GP and GI doc. Even with that support I'm still unsure what's good and not good with this new life. If you ever need anyone to talk to feel free to message me!

Missy
 
@Ihurt: I am really sorry you still feel miserable, even with the medication your Gi prescribed. Yes, some of these tests have their risks but I think the possibility of having an IBD go untreated is a much bigger risk! My Crohn's started out mild but after dropping close to 70 pounds initially and popping blood everyday, they finally took me seriously. It's unfortunate you really have to be bleeding out of your butt constantly to have a doctor take you seriously.

My GI now is wonderful. He called me during my last hospital stay every other day. When I was in the hospital for a month in November, he would come by to visit me on his off days-even though he has 6 children, his own practice, and is usually the on call GI at the local children's hospital. He even saw me throwing up one day when he came to visit me & helped me in bed when I was too weak to get in, then covered me up, and got the nurse to give me pain meds. My parents were in the cafeteria eating dinner, so he kept me company until they returned. He really is amazing & I consider him like family. It took me 4 GI's to find him, but it was worth going through the crappy ones. There arw GI's that care!
 
The person who mentioned dogs, this is the best advice. Yes, I was diagnosed 40years ago with Crohns, so many years of bad times. Then it was my cats, now it is my Daschund, pepper. She is next to me in bed keeping me warm and comforting my every pain. I have hot bubble baths, Vicodin, hot water bottles as well. Know that your animal is the best medicine ever!!!!!!:kiss:
 

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