Crohn's Disease Forum » Support Forum » Undiagnosed Club » Terrified of probable crohns diagnosis


 
01-31-2018, 10:52 AM   #1
Anxious855
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Terrified of probable crohns diagnosis

I am 32 years old and never experienced any real gastro issues until October last year. I started with vile smelling gas and tugging, crampy tummy pain. The pain went off but it led to a diarrhoea accident in public. This then led to 2 weeks of diarrhoea and on four of these days the diarrhoea turned bloody. I had a stool and blood test done, all fine. I got better for a month then I noticed blood after I had used the toilet a few times. My bottom also felt sore and like there was something in it. Got told I had piles. A month on that all stopped and I ended up getting the diarrhoea back for 2 straight weeks with a bit of blood in it from time to time. Went back to the doctors, stool test, blood test all normal, faecal calprotectin however came back high. I got told I needed an urgent referral within the month and am now terrified. Once again, the diarrhoea has stopped. My main symptom is my upper chest area feels sore, almost like a dull ache which comes and goes, sometimes spreading to the back as well as some acid reflux.
I am scared of:

1. How I will get through the tests, I am very hospital phobic
2. The complications of crohns
3. Being put on meds with nasty side effects. Will they give me urgency and diarrhoea? (I don't have that now) or make me too sick to work? I work with kids and worry I will have to give my job up
4. Being at hospital visits all the time. How often do you have to attend them?
5. The thought of surgery.
6. Not being able to eat what I want or go where I want without worrying about toilets. Again, will the meds cause me to get worse in terms of diarrhoea and urgency as at the moment I don't have that?
7. How many meds am I likely to be asked to take each day as I see some people are on crazy amounts and it worries me as to the side effects.
8. Can life ever be how it was before the diagnosis?

I can't believe how this has crept up on me, I used to be so healthy Can anyone reassure/offer advice that life can be ok with an IBD?

Last edited by Anxious855; 01-31-2018 at 12:16 PM.
01-31-2018, 12:15 PM   #2
Jabee
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My first response is try not to borrow trouble. In other words, try not to imagine the worst. I know that is hard since you are facing tests in a hospital setting. Right now, you may have IBD but you could also have celiac disease which is a lot easier to handle. When is your appointment with the consultant? A high faecal calprotectin test means there is inflammation somewhere in your intestines, but not the source of the inflammation.

Iím assuming your consultant will want to perform a colonoscopy and perhaps an upper endoscopy. The most unpleasant part of the colonoscopy is the prep. You will be sedated for the scope(s) and your consultant will be able to view at least part of your intestines. There are lots of other tests, obviously, but scopes are the most common. You wonít be at the hospital for long, and you wonít see very much of it while youíre there. Try to remember that everyone there is helping you and that youíll be able to leave after the test(s).

My first bout with abdominal pain was due to celiac disease, and I managed very well on a gluten-free diet until I was diagnosed with crohnís several years later. Iíve managed crohnís with prednisone and budesonide; mercaptopurine and azathioprine give me severe pancreatitis. Many people achieve remission with these immunosuppressants without having to resort to more powerful drugs like humira or remicade.

Hopefully your consultant will be able to determine exactly whatís going on in your intestines quickly and find the right treatment for you. What ifs like hospitalization or surgery may not ever come to pass for you; it sounds like you feel okay right now, and hopefully you will stay that way.

I see my GI twice a year, more often if things arenít going well, and I have been hospitalized a few times. Since the crohnís is located in my small bowel I donít really have diarrhoea but I do get a lot of abdominal pain. I take medications for both, and sometimes itís really annoying to have to take medication. My children were 10, 8, and 6 when I was first diagnosed, and I never had to slow down or get help (I was a full-time mother). My first hospitalization was 9 years after diagnosis so I feel pretty lucky, and I havenít needed surgery. I hope Iíve answered some of your questions!
01-31-2018, 12:23 PM   #3
Anxious855
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Thanks very much Jaybee.
I had a full blood count and it ruled out coeliac so not sure it is that.
I still don't have an appointment but am guessing it will come later this week. I am scared that they fast tracked it as it must mean the calprotectin level is extremely high Why else would they do that?
I am terrified but like you say, need to stop borrowing trouble hard as that is. I only started experiencing symptoms from October (That must have been my first flare) and after that I have had symptoms on and off. It's hard not to freak out and google everything. Some people have a terrible time with crohns and it is scary to see how many people are in constant pain, not able to leave the bathroom, having constant surgeries. I am not helping myself by reading it but it is human nature.

Thank you again.
01-31-2018, 12:41 PM   #4
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im Thinking youíre in the uk?
This is from nhs

Some people with suspected inflammatory bowel disease who have severe symptoms will need an urgent specialist assessment, the urgency of which will depend on clinical need and might include an emergency admission, but no one should wait more than 4 weeks from referral for a specialist assessment.

Try not to worry, calproctin can be raised by a number of conditions, and itís a marker for referral for further testing in the first incident .

You will be surprised how you will get through the tests when the time arises, I only leave my home for clinic and tests, and I managed an 18 day stay nite hospital.

Try not to worry too much.
01-31-2018, 12:41 PM   #5
ronroush7
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Everyone is different. Your doctor could get whatever it is under control quickly. Hoping the best for you.
01-31-2018, 12:47 PM   #6
Anxious855
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Hmm, so it is standard to refer all suspected IBD cases within a month? I got told the calprotectin was high on the 16th Jan and still waiting for the letter to come through. Would have thought if it was sky high they would have called me or contacted me within 2 weeks but who knows. I am just really scared but know I need to be strong. I can let my guard down again when the diagnosis comes in and I finally know what is wrong
01-31-2018, 12:51 PM   #7
ronroush7
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Hmm, so it is standard to refer all suspected IBD cases within a month? I got told the calprotectin was high on the 16th Jan and still waiting for the letter to come through. Would have thought if it was sky high they would have called me or contacted me within 2 weeks but who knows. I am just really scared but know I need to be strong. I can let my guard down again when the diagnosis comes in and I finally know what is wrong
I would have thought so too. Sending support. Let us know how you are.

01-31-2018, 12:53 PM   #8
Anxious855
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Thank you. I am pretty sure I will be diagnosed with an IBD, I just hope my intestines aren't in a really bad
way and that I won't need immediate surgery/really strong drugs which limits my ability to work or function properly. God, this is scary.
01-31-2018, 02:31 PM   #9
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Everyone is different. I can only offer insight based on my own experience.

1. I too HATE doctors and hospitals. Every dr visit I have still gives me a bit of anxiety. What helped me in the beginning was taking someone with me. A friend or family member, even if they didnít go in to the patient room I felt better not doing it alone.
2. There are many possible complications of the disease but it varies greatly from person to person. I really donít have anything major in addition to the disease so far...some joint pain and I do have GERD.
3. I went through several meds before finding one that works for me currently. I had to be very assertive and persistent though to get my dr to change them initially. Reality is you will probably also try different ones as the disease can progress or become unresponsive. I work as a retail manager...on my feet 8+ hrs a day and pretty active. I do have to take it slow some days and when I was very sick took a leave of absence to get better, but I feel I can do my job just as good as anyone else.
4. I only have to go to the hospital when I have a colonoscopy procedure really...had 3 so far, GI just told me I will need them every 1-2 years now. At the worst of my disease I saw my GI once a month, now I am in remission and see home every 6 months.
5. Try not to think about surgery till it is something you are facing, not everyone will need surgery or you could be many years away from it. I never had surgery and I have had the disease 10 years.
6. I had meds that made my pain greater and worse diarrhea...I pushed my dr to change them. Sure I canít eat some foods, but itís not a big deal. I just find a substitute. We use ground turkey instead of beef because I cannot tolerate very much beef anymore.
7. I take Prilosec for the GERD one pill once a day and Colazal for the colitis two pills twice a day. Sometimes I get annoyed with the pills, but I will take 20 pills a day over being in pain and on the toilet all day.
8. My life has changed since diagnosis. I do keep note of bathrooms wherever I go and some days I am just too tired to be social, but I still feel I live a great life. I refuse to let the disease define who I am. There are plenty of people in this world that have far worse things happen to them...if they can find happiness so can I.

I wish you all the best and hope you can not stress too much over it. I was a wreck in the beginning but talking to people on here and reading others stories really helped. It let me know that others understood what I was going through.
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01-31-2018, 02:46 PM   #10
Anxious855
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Thank you. I think what I find frightening most of all at the moment is that the meds will make me feel worse then I currently do as at the moment I only have a tight tugging type ache mainly in my upper stomach. If I am put on meds I could end up with diarrhoea and all kinds of problems. I work as a nanny and taking time off for the tests is bad enough let alone waiting to see which meds work
01-31-2018, 02:58 PM   #11
ronroush7
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Tell the doctor your concerns.
01-31-2018, 03:01 PM   #12
Anxious855
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I will. I may be wrong but if I do have it, it will be mild as I only have an aching, tight stomach at the moment with no other symptoms. I just don't want to be put on steroids and made to feel worse then I do now. Hopefully they can give me something else which will mean I can carry on working and living my life as I am doing now.
01-31-2018, 05:37 PM   #13
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Iím not entirely sure what meds you have read about that cause severe problems like diahorrea or something else that would seriously affect your life. Most people find medications enable them to live their life as normal. Iíd say the symptoms you are describing are more likely to be caused by the disease itself. When I read about Crohnís and the symptoms, as well as peopleís perception of Crohnís, it is pretty standard that the main symptom is severe diahorrea. Well Iíve had Crohnís for more than 10 years and never have diahorrea except in rare instances when I might eat something dodgy - just like anyone else. Crohnís is an individual disease and everyone has different symptoms. Some people have no symptoms at all.

I take one tablet per day in the evenings and thatís it. I have had no side effects from this whatsoever. Most people who do get side effects from this drug, do so quickly and usually discontinue it within a month or two. The rest of us stay on it without problems for many years.
01-31-2018, 05:45 PM   #14
Anxious855
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Are you only on one tablet a day? That is reassuring.
The thing with me is that my symptoms seem to come and go. I have no diarrhoea now, just a strange tight, aching type feeling in my stomach. I just worry when I read of how people are on crazy amounts of tablets just to get through the day and all the nasty side effects I have read.
I will have to let the GI know about these concerns. I don't know if I mentioned it but I am a nanny and taking time off for these tests is difficult enough let alone the thought of feeling sick/having horrible side effects in the weeks/months afterwards. It's very frightening to think about.
Here's hoping I get as lucky as you when it comes to the right medication.
01-31-2018, 07:33 PM   #15
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Hi Anxious855. I'm glad you've found us, although I'm sorry you have to be here in the first place! I wanted to come and give my two cents on life with IBD. It's not the end of the world, so please don't panic. I've had Crohn's disease for 10 years now, since I was 9 years old, so I've gathered some experience that I hope I can use to answer your questions with!

1. I was hugely hospital-phobic when I was diagnosed. The two key points to remember are 1) the tests are worth enduring because they will give you answers that can lead to treatment, and 2) you are in control at all times. If you don't know what's going on, ask. If you want a doctor/technician to explain something to you, or you're just really nervous about a procedure, tell them! They want you to be as comfortable as possible. I recently had my first colonoscopy with just sedation (kids are put under deeper sedation or general anaesthetic) and I was terrified - shaking, so fearful I thought I was going to be sick. In the end it was an absolute breeze compared to how worried I'd been beforehand, mostly because the endoscopists were wonderful. So don't be afraid to be honest when it comes to the tests: most people are nervous, but the doctors and nurses will be able to reassure you.

2. There are a few complications of Crohn's. The good news is that not everybody gets them. Those that do occur are treatable!

3. Side effects are a real concern for people with IBD. They should not give you diarrhoea and urgency, no. If they do: report it to your IBD team, and they'll find something else for you. You do not have to put up with life-limiting side effects! When I was on my last treatment before this one, I felt ill for a few days as my body adjusted to the medication. I was reassured it would fade soon and, sure enough, I was up in a few days and spent six years without any further side-effects. In most cases, side effects can be avoided or managed, so don't panic!

4. I am flaring at the moment, but even so, my hospital seems a little stretched so I only see a gastroenterologist once every six months. It should be more frequent than that, but more frequent appointments when you're ill is a good thing. Trust me, there's nothing worse than knowing your treatment is not working and having to wait four months for your next appointment! Once you are stable, your gastroenterologist will suggest widening the time between appointments to about once a year or so.

5. I'll be honest here: the majority of patients with Crohn's disease will need surgery at some point. That's not a bad thing, though. Surgery has developed a reputation as a "last resort" because we only have so much intestine - it makes sense to try and "save" it with medication before you go removing it. However, in some cases it is better to elect for surgery before it becomes an emergency. I have had one surgery to remove a stricture, when I was 11, and it put me into remission for a good few years. It was also probably the easiest procedure I've ever had done - everyone involved was incredibly reassuring, and recovery was relatively smooth. Surgery is not always a last-resort option fraught with problems!

6. Again, the meds should not cause you to get worse in terms of diarrhoea and urgency. If you have an IBD, then the disease might do that, if it advances. My only symptoms were initially pain and weight loss, then the diarrhoea and urgency came later. But that's what the medication is for - to prevent those. In terms of planning to be near toilets and making dietary adjustments: unfortunately, those are just part of life for those with IBD. As I mentioned before, I am flaring right now, and so there are many foods that I know I would be better off staying away from. I also get nervous if I am too far from a toilet, or don't know where the nearest one is. But you don't need to worry about this yet, because you mentioned you don't have those symptoms. So don't worry that it might happen - leave it until it happens!

7. The amount of medications some people are on can seem daunting. However, remember that those are necessary to manage their condition. Some people also have multiple conditions, and need medication to manage each one. It adds up quickly! But the main thing is that the medication is there to help. Nobody wants to take medication they don't have to take, it's necessary. And it's just something you adapt to.

8. YES. This is what keeps me going when I am flaring: the memory of the times I reached remission, and how wonderful it was. I felt like I could do anything. So that's why I am fighting to find the right treatment to combat this flare-up: so I can get back to that. It's difficult, and right now it feels too far away, but I don't give up hope.

Phew, I've written an absolute novel here! But I hope some of the things I've said can begin to reassure you, and make things a little clearer. If you have any further questions please don't hesitate to ask me - and I hope you get some answers soon
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02-01-2018, 06:48 AM   #16
Anxious855
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Thank you Emma. I read your post this morning and it was reassuring.
I feel so incredibly nervous about the procedures but like you say, they will help give me an answer and hopefully give me my life back as from my first post on this thread, my quality of life is horrible right now. Not so much because of the symptoms I have had but the anxiety. I still haven't received a referral letter and it has been 16 days now. The waiting and the unknown is the worst.
Thanks for reassuring me about the side effects. I keep hearing of people who can't leave the house as they feel so sick from the meds and about face bloating, severe weight gain and mood swings. I work with children and it terrifies me that this might happen to me.

One other thing, Are you able to eat what you want? Again I keep hearing of people who can barely eat a thing as it sets them off and makes them very ill. I know all these worries seem silly but I just worry my life will be awful and that I will feel worse on the meds then I do now. Right now I feel ok apart from the chest pain. No diarrhoea, no urgency, can eat normally/work etc. I know this is something that will need to be discussed with the doctor as it is one of my biggest concerns.

Thank you again for your help. I will update this thread with anymore questions and updates. Means a lot your response, thank you.

Last edited by Anxious855; 02-01-2018 at 07:05 AM.
02-01-2018, 06:57 AM   #17
emmaaaargh
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You're welcome! It's no trouble at all As to what I can eat: it really depends on how I'm doing. As I mentioned before, I'm flaring right now, which has made me more prone to react to certain foods. For example, the other day I decided to put raw spinach in my lunch and spent a few hours painfully bloated :P Most people only have restrictive diets if/when they flare, and some people aren't affected by the food they eat at all! It's a massively trial and error process, but once you start healing the gut, the ability to digest more 'difficult' things (fibre, fat etc.) returns. One food that I haven't been able to stomach for a very long time is tomatoes (in soup or sauces) but once I reach remission I hope to try again with it
02-01-2018, 07:03 AM   #18
Anxious855
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Thank you Emma, right now I can eat anything without a problem so I worry again that this will change if I am put on meds. It's hard the thought of having these procedures/meds when I feel mainly good.
I really just want the consultation and tests over so I can have crohns as a part of my life, and not consuming ALL of my life.
02-01-2018, 08:07 AM   #19
ronroush7
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Thank you Emma, right now I can eat anything without a problem so I worry again that this will change if I am put on meds. It's hard the thought of having these procedures/meds when I feel mainly good.
I really just want the consultation and tests over so I can have crohns as a part of my life, and not consuming ALL of my life.
I dont think medicine will have an effext (for the most part ) on what you can and cannot eat.

02-01-2018, 08:14 AM   #20
Anxious855
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I hope not. All I can see is being put on loads of scary meds, having to eat bland food and always having sjde effects. It's so frightening but the posts here have reassured me a little. Hopefully my life won't have to change too much if at all.
02-02-2018, 03:34 AM   #21
eleanor_rigby
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Medication will have no effect on what you can or cannot eat. Only the disease has that affect. I can eat anything.

The drugs you are referring to that make you gain weight and give you a round face and mood changes etc are steroids. They are prescribed when someone with an inflammatory disease is in an acute flare and they need to bring the inflammation down. They are short-term drugs with a number of dangerous side-effects if used long-term. Therefore, they are usually only prescribed for a few weeks or couple of months at the most. The purpose is to knock down the inflammation so the patient can then be put on long-term medication that does not have the same side-effects. I have only been on steroids once - when I was first diagnosed. I didnít really have many side-effects and barely gained any weight unfortunately as I was under weight at the time. I was on the steroids for a couple of months and then came off and started my long-term medication, which is one tablet a day. If you are based in the UK you will only be on one tablet per day too. If you feel too nauseous to even leave the house on this tablet then this medication will be discontinued for you.

I do feel we are jumping the gun a bit here though - itís possible you donít have Crohnís.
02-02-2018, 03:45 AM   #22
eleanor_rigby
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Also I had surgery in 2011 and it was the best thing ever afterwards. Afterwards I spent months travelling Central and South America including the Amazon rainforest
02-02-2018, 09:01 AM   #23
Anxious855
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That is reassuring to hear Eleanor especially when I see how many tablets people seem to be on and how they can't eat most foods. I think the unknown is the worst thing. Waiting to be seen, to have the tests and the eventual diagnosis. I do think it is crohns but find it strange that the diarrhoea has stopped and my symptoms come on and off. I do think I will be told it is crohns though.
02-02-2018, 09:10 AM   #24
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There aren't really that many long-term maintenance oral medications for Crohn's. I suspect the many tablets you hear of may relate to other things as well as Crohn's and could include short-term steroids, pain medication, supplements - vitamins and minerals, and medication that you can take for IBS. There is only 2 oral Crohn's medications you can take at one time - an immunosuppressant and a mesalazine. However, it is now considered that mesalazine is not effective for Crohn's so it is rarely prescribed.
02-02-2018, 09:15 AM   #25
Anxious855
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It is definitely reassuring to know you just take the 1 tablet a day Eleanor.
All your posts are really helping as it is making me see life may not be as difficult with this disease as I am imagining.
02-02-2018, 09:21 AM   #26
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No problem. When I felt scared after my diagnosis this post really helped me, perhaps it can help you too: http://www.crohnsforum.com/showthread.php?t=19417
02-02-2018, 01:45 PM   #27
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Thank you. I am worried I have an intestinal stricture too. Can these normally be treated with medication?
02-02-2018, 02:06 PM   #28
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Thank you. I am worried I have an intestinal stricture too. Can these normally be treated with medication?
If the stricture is due to swelling caused by inflammation then it can be reduced by medication that reduces the inflammation. But if the stricture is due to build up of scar tissue due to a lot of repeat cycles of ulcers and healing followed by more ulcers, then medication won't make those scars go away. For that you will need some sort of mechanical intervention to remove them - usually surgery or opening the narrowing via an endoscopy probe.
02-02-2018, 02:09 PM   #29
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Thank you. I am worried I have an intestinal stricture too. Can these normally be treated with medication?
Strictures take a while to form, not just over night.
Itís best to not project worse case scenario at this point.
ĎHighí calproctin can mean over 50 to the thousands, it is not used for the diagnosis.
The symptoms of crohns are similar to many many other conditions.
02-02-2018, 02:28 PM   #30
Anxious855
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Hopefully if I do have a stricture it will be able to be treated with medication.
My doctor said the calprotectin was a very good indicator for IBD and that she thinks I have it even though my blood and standard stool tests have come back normal.
I know some consultants disregard it though.
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