New to the forum

Hi,

My name is Rochelle and i am 35 years old, with a wonderful husband and two sons, Taylor age 10 and Callum age 5.

After a couple of years of symptoms, i had a colonoscopy in 2000 (just after i got married) and was diagnosed with Crohn's. I was put on Prednisolone straight away and came off it after about 2 years (i think - can't really remember!). In that time, i got pregnant with my eldest son, Taylor (while i was on a low dose of steroids - my doc had said it was okay).

Since i came off the steroids in 2002, thankfully i have had no symptoms and have lead a healthy life.

But about 9 months ago, i started to lose my appetite and just didnt feel like eating, so consequently started losing weight. I was actually pretty pleased as i had been trying unsuccessfully to lose weight anyway. Last month, on my son's 10th birthday, i had a really bad episode of diarrhoea and cramps etc and i knew that my Crohn's symptoms were back. It didnt take me long to remember how that felt. So i have been back to my GP and have been referred to a Gastroenterologist and should get an appointment in the next 3 to 4 weeks.

But i have had some very different symptoms to when i was first diagnosed, like i keep getting really constipated, dull achy pains on my left side of my abdomen, bloated hard tummy, backache and aching down my left thigh, none of which i remember having previously.

Would it be normal to have different symptoms 9 years later?

Anyway, i am actually hoping that when i see the doc, he/she will do a colonoscopy as i am a bit paranoid that something nasty is lurking in my colon after researching the internet (which i know isnt always a good idea).

i am a bit upset by it all, as because i have been symptom-free for 9 years, i had forgot i actually had Crohn's and thought it had all gone away!
I also have a breast lump at the moment, for which i am having a scan soon, although both my GP and myself think it is just a cyst.


Apart from my recent health issues, i have my eldest son to worry about. He is now 10, but in June 2007, when he was only 5, he was diagnosed with a brain tumour and had emergency surgery and radiotherapy. His tumour is now stable, but he has six monthly scans to check it has not grown. as a result of the tumour, he has been left blind in one eye and with a life threatening chronic medical condition. But, you would never know to look at him and he copes pretty well with it all, but i dont!

Life can be pretty tough and now i have to wait for 2 appointments for me and Taylor is due an MR brain scan also at the beginning of December.

I am really happy to have found this forum and hopefully will get some much needed support.

Thanks for reading my post,

Rochelle
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Welcome! That's awesome that you got 9 years of remission. I had 6 years and had convinced myself that it was all a big mistake and I didn't have Crohn's. I was wrong, but it was nice while it lasted. I hope your doc can get you back into remission quickly. And I'd recommend taking maintenance medication.

Thanks Stephanie,

It has been soooo long since i had my original symptoms, which is a good thing, but i did forget how rotten it can make you feel and like you said, i had convinced myself it had all gone away.

I'll keep you updated after i have seen the Consultant and i hope they still have my notes from 11 years ago to see what symptoms i had back then as i am sure i didnt lost this much weight!

Rochelle
xxxx

Hi Rochelle! Welcome to the family. :hug:

I am so sick to think that your baby boy has a brain tumor! He's only 10!? And your younger one has no known problems? That much is a relief! I really hope the tumor stays benign. This is so hard on momma. I know that it's way easier said than done, but hang in there and try not to stress. Sounds like your little trooper is tough.

Hopefully, you can get your symptoms under control soon so you can function at 100% again. We're all here for you, hun.

Hi Rochelle and welcome! I am sorry your 9 years of remission had to come to an end. Were you on any medication? I hope you can get in to see the GI soon to see what's going on.

As far as your symptoms changing, I think it is certainly possible. But I would write down all of your symptoms, current and past, to discuss with your doctor. Jot down your questions, too. It always helps to come prepared!

I am sorry to hear about your little guy. I sure hope the worst is behind him.

Hi Rochelle...Welcome!

Good to read your Post.

In my experiences, my crohns has come and gone and come back again over the 25+ years. Any number of symptoms arise....One thing I do immediately is evaluate my diet, what have I eaten differently or quantity of what i eat or stop eating. I may Fast a day with just non acidic liquids letting my bowel catch up or rest. If you are eating processed foods there may have been an additive or ingredient that your body is allergic to, possibly. You may want to stay away from carbs and starches and switch to lactaid milk?

I am happy you are able to find the positive beautiful 'things' in life to make you smile!

Wow, you have been through a lot. I can empathize with you fully. My son was also diagnosed with a brain tumor when he was 3months old and had an emergency crainotomy. This was now 4 years ago and it seemed like yesterday.

I have been dealing with symptoms of Crohns but not officailly diagnosed. My symptoms started with inflammation in my knee and then onto vit b12 and D definancies. A blood test showed last week with the rheumotogist showing that I could possibly have Crohns. I dont see the GI until Dec 23.

I sure hope your symptoms get better and go into remission. You have enough on your plate.
:hug:

Hi Michelle,

Sorry to hear about your son too. Is he okay now?? What kind of tumour did he have?
I find it really hard being the mum of a chronically ill child, as Taylor has been left with a life threatening pituitary condition. I don't really have the energy to worry about myself too, but i suppose i need to be fit and healthy to cope with it all, so i need to sort myself out, but like you, i have to wait to see a GI doc, but i have been told it should be in the next few weeks.


Rochelle
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my doc reckons I might have some IBS mixed in as I too can have constipation and then diarrhoea and the stress of your son won't help that.

i concur with bjeffrey about thinking about what you have been eating and steer clear of acidic stuff like fruit juice - which I miss!

hope you get news soon

Hi rochelle. I'm so sorry you're going through such a bad patch at the moment. This forum is a great place to vent and you'll get lots of support from people who will understand what you are going through.

I have a similar story to you in that I was in remission for nearly 20 years (!) with only slight flare ups and symptoms over that time. Then 2 years ago the Crohns came back with a vengence! And because it had been so long AND my symptoms had changed, it took me collapsing at work in pain to go to the hospital where I spent the next month. I eventually went on to have my second bowel resection.

It certainly is easy to forget you have crohn's when you are well. The trick is to catch it early when you start a flareup. My symptoms have changed too. When I was first diagnosed I had the typical symptoms of diarrhoea, vomiting and extreme pain. Now I suffer from severe Constipation (I can go weeks without going to toilet!) followed by a few days of running to toilet, followed by constipation...the cylcle goes on and on. Sometimes I'm in excruciating pain as well.

This is probably the first time in my life that I have taken my Crohns seriously. This past flare up has changed my life and I am having to listen to my body a lot more. With 3 children and a husband who works away during the week, I, like you, 'don't have time to be sick' so now at the first sign of a crohns flare up, I am on the phone to the gastro team.

Make sure when you see your GI you tell him EVERYTHING including the stress you're under. You should really be put on some sort of long term meds to stop you getting too bad.

Hope things start getting better for you soon and keep us updated.

welcome!! so sorry to hear all this going on! thats a heavy burden. hugs. i am just recently diagnosed with crohns myself all my pain is on left side of belly button only. they say the crohns is in terminal ilium according to a ct scan but i have no lower right pain at all. my stomach has a hard ball in the area it hurts in. you can actually visually see it. i have worried myself sick that its some kind of tumour but have had a ct with barium and contrast and its not. so thats how my crohns is presenting itself. praying for your son and hoping all this gets straightened out for you all and soon.

Hi Michelle,

Wow I think you deserve a medal for coping with all that!

I was diagnosed aged 13, really unwell until I had surgeries at 21 and 22 then had about 4 years of remission and am now recovering from a massive flare up and I would say my disease has changed. I was always constipated (going weeks at a time with nothing), and it happened again with this particular episode, but the effects have been different. Bizaarly now I don't seem to feel any pain until I require immediate hospitalisation! I think you get used to different pain thresholds, and when the disease is in remission it can reoccur in different areas with different severity, so it will present you with different symptoms. Dull achy pains on the left are generally classic signs of constipation. Really try not to worry that it's something worse than your Crohn's (as if that's not bad enough!). Like Jill said, it's a good idea to take a list of symptoms and questions with you to your consultant, and definitely ask him/her why your symptoms might have changed. No question is a silly question. I have always found that constipation is not a condition, it is caused by something, so do not be fobbed off by any medical person who tells you otherwise.

In the meantime be wary of getting into cylcles with laxatives though; you take them, get then runs, take immodium, can't go etc.
My surgeon once told me its like plumbing, if there's a blockage (or rather narrowing from inflammation) somewhere that's constricting the flow you 'feel' the problems futher down (or up), so that's why blessedwithfour's possibly having what sounds like pain in the colon/higher up in the small bowel, when the disease is in the termil-ileum. Does that make sense? Maybe you've got a patch of inflammation causing a narrowing?

I'm so sorry to hear about your son, I can't imagine what your stress levels must be/have been doing. I know it's easier said than done, but please remember to take time to look after yourself, or at least let your husband look after you! My baby was born with a serious heart condition, so I can empathise a tiny bit with what you've been through. It's definitely one thing to be ill yourself, but quite another to watch someone you love going through it!

Keep your chin up, you're stonger than you think. We're all here for you, let us know how you go

Angela x

Thanks for all your responses. I really appreciate the support.

Feeling sad this morning as i have found a pretty big painless lump at the top of my left leg, kind of in my groin area. Is it a swollen lymph node?
Going to try and get to see GP today.

Anyone else had swollen lymph nodes in their groin when having a flare up?

I do suffer with HS (Hidradenitis suppuritiva) so do get boil type things in my groin, which i initially thought this was a few days ago when i noticed it, but it is definitely a lot bigger this morning and doesnt resemble any of my previous boil/cysts that i have been suffering with for the last 20 years and is not painful, which normally they are.

Getting really fed up now, it seems like its just one thing after another .........

Hi Rochelle. Hope you managed to see your GP and have had your mind put at rest about lump. Keep in touch.

Keep your chin up.....

Jennifer

Thanks Jennifer,

Was in two minds about ringing GP, as really feel like i am constantly in her office at the moment and keep feeling really paranoid like i am making it up, but then i know that i'm not!.
Anyway, i thought i would ring the surgery and if it was engaged i was going to leave it, but it did ring and i didnt want to ask for an urgent appointment, so i just asked when i could see my usual GP and she had a slot an hour later! Bit strange i thought - was it fate!
So she had a look at this lump and was surprised that it wasnt giving me any pain and thought it was an infected cyst, so has put me on strong antibiotics. I personally would have thought an infected cyst would give me some kind of pain or discomfort - or could i be wrong.
She did say to go back if it didnt go down after a few days, so i'll keep an eye on it.
No change so far.

take care xxxx

Hi Rochelle.
I too have difficulty deciding when to 'bother' my GP. I feel like I'm not ill enough to be there and often he has no answers for me, so it's a waste of time going to see him. I'm still waiting to hear from my gastro dr who I rang last week! I'm sure I'm having another flare up which is getting worse, yet when I rang last week they said they would like to see me and would send an appt through. Obviously they have decided (without seeing me or asking me my symptoms) I'm not an urgent case. Just hope they're right!!
Are the antibiotics doing the trick? I hope so!

Jennifer xx