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Terrified of probable crohns diagnosis

cmack

Moderator
Staff member
Try not to stress too much, Anxious. It is very counterproductive to be in that state when trying to heal and reach remission. (much easier said than done) I know because I get anxiety too. You may want to discuss your stress with the doctor if you haven't already. I was prescribed something to help me relax on an as needed basis, short term. It's something to maybe think about. My mother often plays solitaire to relax and not dwell on troubles, maybe a small hobby or a book or something would help you not to fixate on the negatives.
 
I just can't imagine mentally being able to get through another episode of non stop diarrhoea day and night or being on long term steroids yet I think that will be the case.
 

Lynda Lynda

Senior Member
I just can't imagine mentally being able to get through another episode of non stop diarrhoea day and night or being on long term steroids yet I think that will be the case.
Chris is right.

I take psychiatric medications and I'm not afraid to say so. But they are not a "cure." Coping skills can be learned and can really help. I just started reading again and have found it to be relaxing as well as it takes my mind off of my worries. And sometimes I listen to relaxing music on my headphones while using visualization, sort of like meditation.

Hugs. ❤
 
Pred doesnt help at all with anxiety... I was very very anxious when I was on pred and afraid of getting sick and go to hospital.. things got much better as soon I stopped, but during that time I tried to convinced myself the anxiety was due to the medication and was not natural.. it helped a bit but its hard to fight against chemical.
 
Yes, I do feel like the pred isn't helping the anxiety. At the moment, I am just waiting for all my symptoms to return which isn't a nice way to live but I can't help it. I just don't think mesalasine alone is going to treat my pancolitis :(
 

my little penguin

Moderator
Staff member
There are studies that in addition to meds for anxiety
Vitamin C can help as well to lower anxiety
Might be worth asking your doc about

Mesamalamine has a high success rate in ulcerative colitis
 

Lynda Lynda

Senior Member
My GI has already used the word "surgery" twice and I just got diagnosed with Crohn's !
I just started taking the 6mp pill yesterday.
I am now in the process of getting Humira approved by my Health Insurance Company and getting a foundation to cover the cost of the Humira.
My Crohn's is of course in the terminal ileum.
My GI doesn't have to say " surgery" again.
I get it......if the medicine doesn't help them I will need a resection surgery.
( sigh )
 

cmack

Moderator
Staff member
Hopefully the meds work, there is a good chance of remission without the s word. I'm not you and I don't know exactly how you feel, but it must be tough wondering. You have my support.
 

Lynda Lynda

Senior Member
I must say that my GI is very thorough and attentive and competent. And his staff seems well qualified and knowledgable. My GI seems to be ordering all the right tests and started me with this Humira Nurse Ambassador.

This is the undiagnosed thread. So I should write somewhere else.

🐸
 

Lynda Lynda

Senior Member
Pred doesnt help at all with anxiety... I was very very anxious when I was on pred and afraid of getting sick and go to hospital.. things got much better as soon I stopped, but during that time I tried to convinced myself the anxiety was due to the medication and was not natural.. it helped a bit but its hard to fight against chemical.
Hope you feel better soon 🌻
 
My GI has already used the word "surgery" twice and I just got diagnosed with Crohn's !
I just started taking the 6mp pill yesterday.
I am now in the process of getting Humira approved by my Health Insurance Company and getting a foundation to cover the cost of the Humira.
My Crohn's is of course in the terminal ileum.
My GI doesn't have to say " surgery" again.
I get it......if the medicine doesn't help them I will need a resection surgery.
( sigh )
Surgery is the last resort solution if biologic meds fail, and tissues are damaged or in particular with terminal ileum if you have fibrotic strictures (thickening of the intestine due to scarring).
Usually you get surgery after many years.... doctors tend to speak about surgery years before it really happen, as it could be an option, but there is no certainty it will really happen
 

my little penguin

Moderator
Staff member
^^^
Yeah that
Some folks are hesitant to take meds so some docs try explain
First we try meds meds then emphasis on surgery
But there are tons of meds
My kiddo is on his third biologic
Plus tried all the other meds prior (8 years woth the disease)
No where near surgery
Gut is healthy now due to biologics

It just takes time to find the right med for the right person
 

my little penguin

Moderator
Staff member
Big hugs to you
When Ds was dx at age 7
I was beyond terrified of having a bag
What he would be able to do
Being so sick
Afraid of the meds etc...
8 years later Crohns is a minor blip for him
The first year after dx was rough but
Since then as long as he gets his meds
His gut has been mostly good

It can happen and you can get normal woth the right meds
 
Your posts really help, thank you. I was only diagnosed in March and I guess as you say, the first year is always the hardest. I just hope my worst fears don't come true.
 
Off the steroids and now my bottom is hurting a lot feeling aching and swollen. I know from experience that a few days/ a week or so on, the diarrhoea restarts. The mesalasine is clearly not working.
Have been crying all day. Hate this horrible disease.
 
I am sorry. Sounds like you need to talk to your doctor about a stronger medicine.
Off the steroids and now my bottom is hurting a lot feeling aching and swollen. I know from experience that a few days/ a week or so on, the diarrhoea restarts. The mesalasine is clearly not working.
Have been crying all day. Hate this horrible disease.
 
I am terrified of going onto a stronger medicine but it looks like I have no option.
Please be honest with me, is it truly possible to have IBD and have NO pain ? I just can't see how that is an option right now. I would say this rectal soreness and discomfort is worse than stomach pain. It's all I can think about as it's so sore. It worries me mesalazine isn't working.
 
Mesalazine is not one of the stronger medicines. Try not to worry too much. Stress can make things worse.
I am terrified of going onto a stronger medicine but it looks like I have no option.
Please be honest with me, is it truly possible to have IBD and have NO pain ? I just can't see how that is an option right now. I would say this rectal soreness and discomfort is worse than stomach pain. It's all I can think about as it's so sore. It worries me mesalazine isn't working.
 

my little penguin

Moderator
Staff member
Actually if you ask most GI they will tell you mesamalamine is like prescribing aspirin for a brain tumor
Not going to hurt much but not going to help much either

Crohns affects the full thickness of the intestine
Ulcerative colitis only affects the top layer

Mesamalamine only acts as a cream to treat the top layer
Leaving all the other layers in treated

In a few Crohns patients it works
Most it does not work

The majority need an immunosuppressants minimum
These are 6-mp
Imuran and methotrexate
Ds like you started on mesamalamine at age 7
I was prettified
Cried so many tears
30 days later it still wasn’t working
Then switched to 6-mp (went to his liver )
Then methotrexate
Then remicade
Methotrexate worked for his gut but he has other issues (vasculitius and arthritis)
Which required remicade

Ibd can be pain free
The rectum is the last to heal and very stubborn

It will get better
You will find the right med
And then you won’t cone back here much ;)

Did want to add immunosuppressants DO NOT MAKE you sick
Ds was on them since 2nd grade
Now going into high school and gets the least amount of colds etc out of all my kids

You only have to be careful if you get something like the flu
Then your more at risk for pneumonia
So flu shots all around and hand washing
 
Your posts make me feel better always Penguin. Thank you.
I have pancolitis so do you think mesalazine is next to useless to treat that?
It's interesting that you say the rectum is always the last to heal. That is the only part that is bothering me now. No stomach pain at all.
I am wondering if I should try and get some rectal meds first before anything else. I feel like it needs direct treatment that oral mesalazine just can't treat.

Ron, thank you. I know my anxiety isn't helping. I am just scared that it is going to take forever to sort out and that I will be in pain for a long time to come. It's taking over my life and making my job (Which is very active) very hard to do.
 
The soreness in my rectum isn't as bad as it was. I am just concerned as I still haven't received a date through to go to the IBD clinic. I am not convinced my doctor put the referral through. Even my consultant said my doctor is very bad at getting back to him and is not organised. Would it be a bad idea to speak to my consultant about my concerns and ask him to chase up the referral on my behalf?
 

cmack

Moderator
Staff member
I would ask anyone who you think might be of help. Is it a medical consultant that you have?
 
I had to go private as my doctor wasn't pushing the colonoscopy through urgently despite my faecal calprotectin test coming back as over 3,000. So I went private and had the colonoscopy done in March, had the follow up appointment in April as part of the price and then was told to get a referral for an appointment with the NHS IBD clinic with my doctor. Despite several follow up calls making sure it has been sent, I still haven't had a letter giving me a date so can only assume it hasn't been done.

Hope that all made sense. To sum it up, I went private with the colonoscopy and am now waiting to get back into the public health system for the IBD clinic which all UK patients should have access to but my doctor is useless (Even my consultant said as much) and I still don't think it has been sent through.

I will email my consultants PA so he is aware of what is happening.
 

cmack

Moderator
Staff member
I had to go private as my doctor wasn't pushing the colonoscopy through urgently despite my faecal calprotectin test coming back as over 3,000. So I went private and had the colonoscopy done in March, had the follow up appointment in April as part of the price and then was told to get a referral for an appointment with the NHS IBD clinic with my doctor. Despite several follow up calls making sure it has been sent, I still haven't had a letter giving me a date so can only assume it hasn't been done.

Hope that all made sense. To sum it up, I went private with the colonoscopy and am now waiting to get back into the public health system for the IBD clinic which all UK patients should have access to but my doctor is useless (Even my consultant said as much) and I still don't think it has been sent through.

I will email my consultants PA so he is aware of what is happening.
I understand what you are saying now. Yes, you need to verify that something has been done, that is critical. I would strongly encourage you to follow up on anything you can to get some answers. Good luck!
 
I just sent the email. Hopefully my consultant will have words with my doctor and say they need to be more supportive. If I were still having bad symptoms, this would be unacceptable.
 

Lynda Lynda

Senior Member
Actually if you ask most GI they will tell you mesamalamine is like prescribing aspirin for a brain tumor
Not going to hurt much but not going to help much either

Crohns affects the full thickness of the intestine
Ulcerative colitis only affects the top layer

Mesamalamine only acts as a cream to treat the top layer
Leaving all the other layers in treated
I have been sick since 1997 but was diagnosed with UC in 2006. All I was ever prescribed is Asacol or Lialda and nothing else. Now I have been diagnosed with Crohns. If I had been prescribed a stronger medication for my UC would I have been able to avoid getting Crohns ? I have had four colonoscopies during the past 12 years, so I am getting scoped. During the 12 years I have three GI doctors. My life seems to be in their hands.
Lynda 🐝
 

Lynda Lynda

Senior Member
I just sent the email. Hopefully my consultant will have words with my doctor and say they need to be more supportive. If I were still having bad symptoms, this would be unacceptable.
I am glad to hear you are following up on everything.
You have just got to keep calling and sending e-mails.
I hope you start feeling better.
Lynda 🌻
 
Petrified now. Went for a BM earlier and blood came out. I have a doctors appointment tomorrow but am terrified they will suggest surgery and at best they will say I have to go straight onto the higher dose tablets which I know don't always work and which means constant blood tests.
Mesalazine is not working. I know it is a weak drug but it is terrifying to me and must mean my UC is really bad not to be responding to it.
Just so upset right now.
 

cmack

Moderator
Staff member
I am really sorry to hear that you are seeing blood. That is definitely cause for concern. Be sure to seek treatment if you think you can't wait until your appointment. If there is a large amount of blood it needs to be dealt with very quickly. I hope the doctor will help you soon. You have my support.
 
Now I am even more scared.
I am hoping they will suggest rectal meds first before the 6mps. I feel fine other than the bleeding. I just hope my doctor doesn't scare me more. I am already terrified.
 

cmack

Moderator
Staff member
Try to relax, blood isn't always serious, it just can be sometimes. I didn't mean to scare you, sorry if I did. Sometimes it can be as simple as a small hemorrhoid. Quite often it is a relatively minor issue, I'm hopeful it is in your case.
 
What's the protocol here? Do they suggest hospital admission/surgery when this happens?

I am definitely not getting any sleep tonight. :(
 

Lynda Lynda

Senior Member
I am sure that your doctor will do everything he/she can before even getting to the suggestion of surgery. Everyone's symptoms and treatments are different.
It's a long journey.
Take Care 💕
 
Thanks. I am so scared just thinking of what the appointment will be like tomorrow as I am sure she will suggest surgery.
I am even thinking I should just give up my job as I know I am going to need countless blood tests if I am put on 6mps which means a lot of time off work.
It's things like if I am put back on steroids I will get the moonface and weight gain. I already feel self conscious of my body and what UC has done to it. And what if all that doesn't work and I continue to have bleeding?

I am terrified.
 
6mps take a long time to work and in that time whilst you are waiting for it to work, you are put on steroids. So that will be 3 months or so of steroids which terrifies me. Not to mention the constant bloodwork that needs to be done once you are on them. I was always worried that my life would consist of constant hospital trips once I had UC. Now it feels like yet again, my worst fears are coming true.
 

cmack

Moderator
Staff member
But how can they tell if it is serious?
Only by examination. You are the best judge of your current health. If you think you need to see a doctor you should do so. It's your call. I hope you are feeling better soon.
 

cmack

Moderator
Staff member
6mps take a long time to work and in that time whilst you are waiting for it to work, you are put on steroids. So that will be 3 months or so of steroids which terrifies me. Not to mention the constant bloodwork that needs to be done once you are on them. I was always worried that my life would consist of constant hospital trips once I had UC. Now it feels like yet again, my worst fears are coming true.
Your worst nightmare would truly be going untreated and getting worse. You are headed in the right direction now and things will improve with treatment. I know it's hard right now, trust me it will get better. You will adapt and overcome. When you see the doctor you really should ask about anxiety and tell them how you are feeling. There are medications available that have minimal side effects to help you deal with the stress you are experiencing. It's just a suggestion, you decide what's right for you. :ghug:
 

Lynda Lynda

Senior Member
Anxious855 : I have been taking the 6mp for three weeks and I take no steroids. I get a blood draw every two weeks. I can make an appointment on-line with Sonora Quest Labs and so when I arrive at their office I can get in and out of there quickly.

I have anxiety, so today I opened up my window and mini-blinds to let the sun into my apartment. I listened to music. I colored with colored pencils and blank paper. I took out my trash. And I ran two errands. Tomorrow I plan on reading my book. You gotta keep busy, but still give yourself time to rest.

I was diagnosed with Crohn's this April. Thank God I now know why I was sick the past 6 months. The plan for me is 6mp pill and Humira. I have not received my Humira yet.

When your thoughts are spinning out of control try to think of all the things you are grateful for, this works for me. I just say them out loud while sitting in my apartment. I don't care if my neighbors hear me. I have been talking to myself for years and I don't care, I'm gonna keep doing it !

I read a lot of threads / posts here and by doing so I have learned enough to make me feel more comfortable with my disease. When the Humira Nurse Ambassador came to my apartment to explain Humira I already knew something about it. And when my doctor showed me where my terminal ileum was I already knew where it was. There are threads here too about music, books, jokes and funny pictures.

Stay Strong.

Lynda
 
On my notes my consultant said I would need another dose of steroids and 6mp if my symptoms returned and it looks like they have.
I am going to suggest suppositories first to her but I think she will disagree and say I need the other stuff.
I feel so nervous, my stomach is in knots and I can't eat as have no appetite. Also, psychologically I am terrified of needing the loo again and seeing blood so that isn't helping either.
 

my little penguin

Moderator
Staff member
So here is the thing
Once you get things under control woth meds you will spend less time at the docs and go about your life
Woth bloodwork every three months for monitoring

Suppositories are a band aid at best
Plus very messy (Ds hated them )
6-mp or mtx
We prefer mtx (works faster )
After you get over the build up bloodwork
Then at 3 months
Bloodwork is standard Crohns bloodwork
For any meds that is needed for every three months
A lot of folks are on 6-Mp for years without issue

Please be patient while they find a medicine that your particular body likes and responds to

Ds got there and so can you
The beginning is tough since they don’t know what your response will be

Instead of steriods
You could ask for een (exclusive enteral nutrition)
Basically all formula (no solid foods ) while you wait for it to work

No side effects and heals the gut
Modulen is used in the UK

Ds has been doing this for 8 years
Just monitor every 3-4 months with visit /bloodwork
And scopes every 2 years
All good

Lynda Lynda
UC doesn’t progress to Crohns
You either have one disease or the other
So you are probably had mild Crohns in the beginning
Hence the 5-asa
 

Maya142

Moderator
Staff member
Like MLP said, UC does not "become" Crohn's. It's likely you were misdiagnosed with UC when in fact, you had Crohn's.

Anxious855, I have just read this entire thread and the first thing I wondered was whether you are seeing someone for the anxiety? Anxiety makes everything worse. It makes you more aware of physical symptoms and can make pain worse. Have you seen a psychologist and tried Cognitive Behavioral Therapy?

My daughter deals with anxiety too and has been working with a psychologist for years. Her GI insisted on her seeing one when she was diagnosed. Said stress would make the disease worse and my daughter needed to learn how to cope with a chronic illness.

She sees her psychologist regularly and has learned several techniques to calm herself - diaphragmatic breathing, guided meditation or listening to audiobooks. There are several apps she likes - isleepeasy is one and Headspace is another.

Coping is hard, but not impossible. What you are doing now is called catastrophizing - imagining the worst possible outcome. That doesn't help anything! It's really hard not to do, but I would suggest thinking about the best possible outcome. Because if you think the worst could happen, then the best could happen too.

The best possible outcome here would be you going on 6MP and it working and you being in remission and getting used to your "new normal." Your new normal will include appointments with your GI and blood work every 3 months, but besides that, it's not all that different from your old normal! I prefer thinking about that outcome, don't you?

CBT teaches you to look at and respond to situations differently.

6MP or Imuran (Azathioprine) do require frequent blood work in the beginning, but once you get past that, it's every 3 months and you don't have to think about it. It's weekly for 4 weeks, biweekly for awhile, then monthly for awhile and then every 3 months.

It does take a while to work, which is why you are put on steroids usually, to induce remission while 6MP kicks in. EEN is another option. It is standard for kids in the UK, and I know sometimes adults do it too. It actually heals better than steroids do. It's formula and nothing else for 6-8 weeks. It is hard, but possible.

Besides like 6MP and Imuran, there is Methotrexate. Then usually Remicade, Humira, Entyvio, Stelara, Simponi and Cimzia - you have LOTS of medication options. I really think you need to try not to panic, because you WILL find the right medication and then you will barely think about IBD!
 
Thank you. I think I do need to look into therapy. I am a very anxious person anyway, so this is all very hard for me to deal with.
My doctor said keep an eye on it and if it comes back, I will need to go on the steroids and then 6mps will be discussed as another medication I will need to use.
 
Oh My! I am stressed just reading this post, lol.
Anxious, my son was diagnosed a year ago with Crohns, so we are just getting through the first year.

A few thoughts...
Ditto on the trying to calm down. Stress can be a big trigger in flares.
There are Many options to maintaining the disease without surgery or a ostomy bag. Even if you require surgery, it does not automatically mean you would need a bag. From what I have learned, surgery is more of a last resort if none of the medicines are working...and there are quite a few to try and different ones work for different people.

I'm not as familiar with UC, so I'm not sure how diet affects, but you might start keeping a food journal to see if something you are eating makes the bleeding/diarrhea worse.

You asked, "is it truly possible to have IBD and have NO pain?" Yes it is possible! I cannot say that it is definite for everyone though. And even though my son does not experience much pain anymore he does occasionally have flareups. And sometimes the hospital trips and medicine can be uncomfortable and inconvenient...but definitely better than the constant pain.

You asked "But how can they tell if it is serious?" There are many ways. Blood work can give them clues, my son has also had xrays, barium x-rays and a CT scan to determine the severity.

As for the blood in stool, your doctor should know about this. It is not uncommon in an IBD but my son's doctor want us to report any change. The doctor usually wants to know how much, what color it is and where is it (on the outside or mixed within or separate from the stool). I just usually call and leave a message with the nurse. And it does not automatically mean surgery.

I am no doctor so you guys correct me if I'm wrong on anything.

Mom of I (17) diagnosed with Crohns at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec
 
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Thanks for the reassurances. The blood really scared me. It came out on it's own and every time I go for a BM now I panic that I will see the same. To me, it is an example of the meds failing. My doctor didn't seem too concerned today but I know it isn't a good sign and means that I am not healing.
 

Lynda Lynda

Senior Member
Anxious855 : I learned CBT in the hospital, an aftercare program and at my clinic. I learned in a group setting. It works. Give it a try. 💕
 
I have an appointment at the hospital in early September. I still have rectal soreness especially when I sit and occasionally I see mucus when I go for a BM. I think I have seen spots of blood a few times but it could just as easily be undigested food so I don't know. I have some questions, can anyone help?

1. Are those symptoms alone enough for the nurse to say I need to go up to 6mp? I am currently on
mesalasine.
2. What happens at a clinic and how long will I be in there roughly?
3. Will I be on high dose steroids for months while I wait for 6MPs to work if they tell me I need to switch meds that is?
 

cmack

Moderator
Staff member
I'm not sure of the answers, I hope someone is along shortly who is... Hang in there.
 
Thanks for replying. I hope someone can help, feeling nervous about the clinic appointment and what will be done there as well as them saying I need to go on 6mp.
 
I think only good doctors can answer those questions.
Lets be positive and hope you'll feel better in september. Otherwise good doctors will know how to address thebsituation dont worry.
 
Feeling highly anxious. I joined a Facebook group today and am completely shocked at how many people are given bags/told they need surgery very early on in their diagnosis.
It really doesn't seem like they have had time to go through all the meds and seem don't even seem that bad so I am shocked and hugely worried that when I go for my appointments, the nurse will say I need a bag.
There was one girl who got diagnosed in November last year and she was having a bag and showed photos of herself in hospital with one. Why? I thought surgery was a last resort so why does almost everyone in this group have a bag? I am so worried. :(
 
Feeling highly anxious. I joined a Facebook group today and am completely shocked at how many people are given bags/told they need surgery very early on in their diagnosis.
It really doesn't seem like they have had time to go through all the meds and seem don't even seem that bad so I am shocked and hugely worried that when I go for my appointments, the nurse will say I need a bag.
There was one girl who got diagnosed in November last year and she was having a bag and showed photos of herself in hospital with one. Why? I thought surgery was a last resort so why does almost everyone in this group have a bag? I am so worried. :(
I think the issue is, when people are first diagnosed, often they have had years of inflammation causing damage to their bowel that no one has known about and they have not been treated for. Crohns is a difficult disease to diagnose. It is common that the disease is first diagnosed during an emergency trip to hospital when things have become really bad for the patient. By that point drugs may not work and the first thing that happens is an operation. That’s what happened to me. I had 5 years of trips to the doctor and being told I had IBS and I should eat more fibre. It was only when I went to the hospital extremely ill that Crohn’s was ever mentioned and I had surgery before I was ever prescribed a Crohn’s drug.

I had one of the worst possible complications of Crohn’s - perforated bowel. Yet after my surgery I did not wake up with a bag. Since the surgery, which was 7 years ago, I have travelled the world, bought a house with my boyfriend and I am studying for a PhD. I take one pill a day and so far have had no more surgeries.

People who have had horrific complications with Crohn’s are more likely to join support groups to meet people in similar situations. My boyfriend recently met a 90 year old woman who has had Crohn’s all her life and only one surgery in her 20s that did not leave her with a bag.
 
That does help to read Eleanor. Hopefully that is the case and these people have just had years of inflammation building up to the point where surgery/A bag is the only resort. It was just shocking to see how many people had surgery/a bag so early on. Pretty young people in some cases too.
I have already had a colonoscopy so I would have thought that if he felt the damage was beyond the help of meds, he would have said something. It's just hard not to panic.
 
Anxiety is high today.
Someone on the Facebook group said they were feeling fine but had an appointment at the hospital for a blood test. They were then called up urgently and told they had to come in immediately for admission as the level was so high. I am now terrified that will happen to me.
I can't deal with this illness and the anxiety it brings. So many people in the group are ruled by their illness, are feeling awful all the time and most have had surgeries or rejections. I am so scared I really am. I just can't cope with the anxieties.
 

emmaaaargh

Moderator
Staff member
Please do leave the Facebook group if it's affecting you that badly. They are excellent for hearing the stories of others and gaining education/support, but, as with any support group, the people that gravitate towards them are often the people who are suffering the worst. They do not represent the majority of patients and your mental health is being adversely affected by seeing a disproportionate amount of terrible stories!

Throughout this thread it sounds as though your anxiety is causing you to catastrophize and imagine every worst-case scenario as though it will be (if not 100% then) very likely. I suffer from an anxiety disorder and I used to do this all the time, which is why I say: please seek some help for your anxiety. It is not helping you in the slightest. Your stress levels have an adverse effect on your digestive health, so it's in your best interests to stay as calm as possible. Your life will not forever be ruled by this disease. You are still at the very beginning of your journey, and as awful as it is to have to wait, there is an adjustment period that comes with trying out meds to find the right ones for you. But you will find them. You will get your life back. Please please please do not be fooled by all the horror stories into thinking your life will be ruined by having this disease!
 

Maya142

Moderator
Staff member
Very wise words from Emma. Anxiety is horribly tough to deal with but it CAN be dealt with and it MUST be dealt with, otherwise it will take over your life. Like Emma, my daughter has Generalized Anxiety Disorder and had to be taught coping strategies and the kinds of thoughts she needed to avoid (or how to calm herself down when she had them). Thinking about the worst possible outcome doesn't help anyone. That is called catastrophizing in the mental health word. Some things that help her is reminding herself that "What if...." thoughts are pointless or problem solving. In that case, she thinks about the problem, and comes up with possible solutions.

So let's go to "What if my Crohn's becomes worse?" Well she can 1) tell her GI specialist ASAP; 2) ask what steps can be taken and inform herself about possible meds if there is going to be a med change; 3) Stay on top of testing and make sure she is getting copies of the test results just in case and 4) Remember the dreaded prednisone is often used as a back-up option.

If you stop and answer irrational thoughts rationally, they become less scary.

If you are not under the care of a psychologist and psychiatrist, I'd definitely urge you to see a psychologist at the very least.

Honestly, I would leave the Facebook group and even stop reading worst case scenarios on the forum - like others have said, the people seeking help are sicker than most with the disease. Try to keep yourself busy with other stuff - your work, your family, a hobby, a pet etc.

Good luck and hang in there!!
 
Try to take a big breath and a step back from all the fear. Are you currently being treated for your anxiety? I actually think anxiety is more debilitating than many other illnesses. Can you see your GP about it? There are many medications you can take that would be very helpful for anxiety (I take Celexa but have taken other medications in the past as well).

Please do leave the Facebook group that is making you so nervous. So far you are taking a medication with few side effects (do you know whether you have UC or crohn’s yet?). I would focus on treating your anxiety; once you feel less anxious you will be able to see everything else more clearly. Try hard to take one day at a time and not think too much about what is “next” if that makes any sense. Hang in there! We are all sending support.
 
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