Diagnosed today

[LizzieB]

Hello you lovely helpful bunch,

I just wanted to say thank you to the people who have responded to my very confused and emotional posts for the last 2 months. Today I have been provisionally diagnosed with Crohns, and although it feels like 2 years (mainly because that's when my first noticeable sympoms started) it only actually took 2 months. I'm probably one of the lucky ones.

I think the major issue for me was, shock horror... ITS SO EMBARRASING! I kept it to myself until the end of July. Dealt with the pain in silence and cried silently in the bathroom. In hindsight I was a complete fool, but at the time I felt that the areas giving me pain, and the sympoms were hideous and naturally made into a joke by others.

When I was finally admitted to hospital at the end of July the prodding and poking began. I was mortified! I'm very private and this was beyond my control. I'm still nervous when being examined but quickly get over it. It's just so something that has to happen now, I've pretty much gotten over it.

I've got to admit, this forum has helped massively. Both with advice and real stories. I could relate to so much of it, so really pushed my doctor (with the help of my sister) and we actually got somewhere. A diagnosis, in record time!

So my next battle is meds, I was offered prednisolone, I however opted for Budesonide as I wanted to at least try the one with less sympoms first. Mesalazine, calcium d forte, and some nutrient drinks.

I'm on the road, against all odds and against all time frame.
Thought I'd feel better with a diagnosis, but feeling numb right now. Let's see how I feel after I've slept on it. Love and good health to all! X

 

[DJW]

Hi LizzieB.

I'm glad you have answers...but I'm sorry you've joined the club. It takes time to deal with this diagnosis psychologically. There is a grieving process we all go through. Give yourself lots of grace. You will have ups and downs. Sometimes you may want space, perfectly alright. But don't cut yourself off completely. Family and friends are important.

Sending you my support.

 

[LizzieB]

Thanks so much,

A few others and yourself have been incredibly helpful in this (let's face it) shitty time. But I really appreciate your time to read and answer. It remarkable how people share, help and advise on this forum.
You've hit the nail on the head again, it is a grieving process. I wasn't really aware until you just said it and it slightly choked me up. I feel completely different than a few months ago. Slightly battered, I look smaller and unwell (and unattractive, let's be real) I'm exhausted and feel like I'm in a protective bubble. My old bubbly, energetic, happy self has either been suppressed or died. I'm not sure if this is the new me, or the me for now.

You're right, I'll try keep my family as close to this as possible. It's hard as they don't live near me, and my Dad is saying things like I have to force myself to eat. Think he thinks it's slightly like an eating disorder, oh dear!

However, strength is the key. We're strength in numbers and better together, so one reason why it's good you have another person in the club tonight. *virtual group hug please*

 

[afidz]

As DJW said, there is a grieving process, it might not sink it for a few weeks, or even months. I remember not feeling much of anything the day I was diagnosed.
I am glad you got answers, but, I am sorry what it came to.
Whatever you go through in your new journey, just remember that you have this forum to turn to.

 

[DJW]

There is hope even with Crohns. Once you start feeling better your perspective will be different.

My guess, if I saw you now, I'd see someone who's been through one hell of a battle. Maybe beaten and bruised, but you won! I can respect that.

Onward and upward. :thumright:
:ghug:

 

[Desperatemom]

The words u use I just heard from my daughter today. She feels numb inside and out, she feels like just crawling into bed and crying. I live ten mins from her and does not want me to stay with her because she wants to be alone. I agree about a grieving process. Not only does diagnosis hard, but the decisions u have to make are overwhelming! Because everyone is different, you really dont know what your story will be. All u can do is think positive and visualize ur life pain free. I pray that everything turns out well for you.

 

[syzygy]

I can relate both to the grieving and to the need at times to just want to handle it on my own. It seems tough at times for family or friends to know what to say. To some extent I kind of want to protect them from all my teeth-gnashing about coming to terms with the diagnosis. Part of it is to save their sympathy for when I really need it physically. Other times I just feel kind of cut off, like it's hard to make chit-chat about little things when this is on my mind so much right now.

Grieving really is a good word for it. Coming to terms with the diagnosis has played on some midlife themes for me. Not to get overly corny, but at times it feels like what I'm grieving is that youthful sense of a life that's wide-open and full of opportunity. I'm starting to see my own mortality in a more direct and real sense. There's this thought that pops up at times for me that Crohn's just might be the thing that does me in.

Scary stuff. I'm appreciating being able to say these things here with folks who know what it's like.

 

[valleysangel92]

Hello, I'm afraid I seem to have missed much of your story, I apologize for that, I've been quite poorly myself lately so haven't been around as much as normal.

I am glad to see that you appear to have answers now. I know it might seem a strange thing to say, but having a diagnosis does at least mean that you can now begin to treat the problem and get on your way to feeling better.

I completely understand the choice to take buedesonide over pred. Its a much nicer seeming medication and the side effects are much more bearable. The down side is that since it's targeted at a specific area, it is not useful for all of us so it doesn't always help. If you find that it doesn't work for you then don't be too worried about trying pred. It does have a lot of side effects, but used correctly and for a short period it can be really useful in gaining some control of Crohn's . You might already know from reading around the forum but mesalazine is one of the mildest drugs available for dealing with Crohns. It's a popular first choice, it has a low side effect rate and is one of the safest medications available for Crohns, but it can often be too mild to fully control crohns. I take pentasa, which is a form of mesalazine, but it's not enough to keep me stable, so I will be going onto mercatopurine soon, which is an immunosuppressant. If you find that your symptoms are not improving or that they start to worsen again when you start to lower your steroids then you may need to go onto a more powerful medication. Don't be afraid to speak up and make your doctors listen to you. Its your body, you know better than anyone when something isn't right.

As for how you're feeling emotionally, that's more than normal. This is a huge thing for anyone to deal with. I don't think any of us really knew how to feel when we were first diagnosed. It is generally a relief to finally here whats wrong, but its also frightening and upsetting to know that you'll have this for the rest of your life. The medications and the prospect of potential surgery further down the line can also be frightening.

Take time to let it all sink in. Allow yourself to feel sad or angry if you need to, come and vent to us as much as you need. Everyone here understands what you are going through and no one here will ever judge you if you need a shoulder to cry on. It can be difficult for family and friends to really understand what we are going through. There are times where I wonder if they understand at all, but there are things that can help. You could try and get them to have a read through some of the posts here or pick out some trusted websites that explain crohns disease and have them read those. If you are comfortable with it, then it might be a good idea to have family members come to some of your appointments so that they can hear first hand what the condition means for you as an individual . Its pretty common for people to say the wrong thing to us, it can be really hard for them to grasp whats going on, particularly when we often look well from the outside so there's no clue to how terrible we feel inside. Try to be patient and explain why what they say is inaccurate or hurtful.

It's early days now but remember you can feel better. It won't be like this forever. It's a bit of trial and error to find what treatments suit you, but hopefully it won't be too long before your starting to notice a difference. Crohns disease can change your life but doesn't have to rule it, you seem like a tough cookie, I'm sure you'll show it who's boss and remember, when you're struggling, we're your back up.

 

[LizzieB]

Wow, I've just seen all your messages after a couple of days offline.

I'm so happy I'm in a forum full of people who either know what it's like or have someone in their life who's going through it.

I've gone through a few angry days. So I completely understand syzygy says about losing that youthful sense of life. I'm in a constant worry and feel like because I'm in intermittent pain and having different side effects that I'm constantly MOANING!

To be fair desperatemom, you sound like you're doing exactly the right thing. Being there for your child when she needs you, and she does, she's just angry. Knowing you're there is better than having someone who doesn't offer. My Dad thinks that I'm causing myself to be anorexic, a little research and by talking to me would make me feel so much better. All these accusations as if I'm doing it to myself is really not what I need.

Valleysangel, yes I'll speak up if it's not working, although it's hard with the stubborn doctors. I'm also on 4mg of pentasa as well as 9mg budesonide. Having pains still, maybe a little sharper as it's started making me go to the toilet less. I never know if that's a good thing as surely constipation/strictures are damaging like dihorhea.

Oh, and since taking budesonide it's brought out the fact that I may have arthritis. Crohns, the gift that keeps on giving.

Good luck to everyone, and good health

 

[syzygy]

Lizzie, especially early on, I also heard that message at times that it was all psychosomatic or in my head and that if I was just able to manage stress better, I'd probably be all better. It felt pretty demeaning to imply that my symptoms were something that I was causing to myself because of my choices or even just my quality as a person. It helped to put it in perspective for me to remind myself that that these comments were unintentional and from people who were really close to me and were genuinely well-meaning.

It also helped to realize that it wasn't just other people placing that blame, but I take a lot on myself. It's a little easier to dismiss those thoughts now that my dx is clear and I have a lot more information, but those doubts do creep in from time to time.