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Crohn's Disease Forum » Your Story » Confused and lonely... what next??


08-16-2015, 03:02 PM   #1
Her_Thing
 
Join Date: Aug 2015
Location: United Kingdom
Confused and lonely... what next??

Hi, While new to IBD I am well aware what supportive and useful places forums such as these can be. On Boxing Day last year I lost my wonderful wife and soulmate to Ovarian Cancer. Throughout her illness talking with others affected by the disease was a great comfort, solace and a mine of information for us both.

My story then begins with me grieving for my loss on the back of a two year period where I tended to forget about myself in order to care for my wife. Of course such things take their toll. Symptoms such as weight loss, exhaustion and even changes in bowel habit I put down to stress and depression. Since May though these symptoms got progressively worse and I finally went to see my GP a few weeks ago when I noticed a swelling on my left abdomen and felt just so utterly exhausted I couldn't think straight.

The result is that following a CT scan and colonoscopy last week I have just been informed I have Crohn's disease. To be honest I took that news with a degree of relief because I had almost convinced myself that it was cancer. However, the news is beginning to sink in and I am quickly realising that such a diagnosis is in itself a life changing event.

I am feeling very apprehensive, confused and so very lonely at the thought of what my future holds and at the moment feel like I am left dangling by the medics with no treatment plan or any indication of what happens next. (I think I have to wait for the histology report from the biopsies that were taken before anything is decided).
08-16-2015, 03:23 PM   #2
buttER
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Join Date: Feb 2015
Location: Netherlands

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Dear Her Thing
I am so sorry to hear of your loss of your soulmate. I can understand you are feeling very lonely now, and you have to bear this new intruder on your life by yourself. I hope you have other people near you who you can lean on and ask for help.
So......Welcome to the forum. I have found it a wonderful place for support (emotional and informative). In a way I hope for you that the biopsy results confirm what is suspected, because I am the one of many here where the biopsy does not match up with the other tests and that makes diagnosis and treatment more difficult. So being on the forum is a win-win situation, you will always have people around you in a similar situation.
Crohns/IBD disease range so much in symptoms and severity. Every case is unique. Please do not be scared. The best thing (in my opinion) is to be well-informed, open to changes in you life - lifestyle, diet, who knows what else - and when you can, celebrate what is good in the world. In my case today that was watching mist rise off a pond, being greeted by a neighbour from across the street, and enjoying a home-made gluten free, dairy free, egg free, sugar free chocolate cake!
Good luck and remember, the people who read your post will be rooting for you. Keep us up to date please.
08-16-2015, 04:39 PM   #3
earthshine
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Join Date: Jun 2015
I am so sorry to hear of your loss.

I wish you well, and hope you find good health and healing.

I don't have crohn's, but i do currently have a fistula and diarrhea sometimes.

I have found psyllium fiber and probiotics, as well as digestive enzymes to be of benefit.

And I also have found it helpful to be grateful for the little things, for the birds, for warm weather, for a phone call from a friend.

best wishes, and take care.
08-16-2015, 04:40 PM   #4
earthshine
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Join Date: Jun 2015
King of Orange - the cake sounds wonderful, would you mind sharing the recipe?
08-16-2015, 04:53 PM   #5
buttER
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Join Date: Feb 2015
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King of Orange - the cake sounds wonderful, would you mind sharing the recipe?
Super easy if you have a food mixer:
- 150g rice flour
- 10g stevia powder - you will probably have to experiment depending on the stevia you have, or otherwise use the normal amount of sugar
- 150g sunflower margarine
- 2-3 heaped tablespoons of cocoa powder
- 3 heaped teaspoons of Orgran No-Egg egg alternative whisked up in about 75ml water
- some milk/milk alternative to get to right consistency.

Mix together slowly until ingredients are combined, then at highest speed until light and fluffly (it might separate a bit but that is not a problem).

Spoon into a lined loaf tin and bake about 35 mins at 180 centigrade (350F) until it starts to come away at the sides of the tin.

I freeze half of it to keep it fresh, and keep the rest in the fridge. Pop a slice in the microwave for a dose of warm fudgy chocolate cake. Yum.
08-16-2015, 08:55 PM   #6
earthshine
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Join Date: Jun 2015
this sounds delicious! thank you so much for sharing, I am making a note to make this soon! yum, indeed!
08-17-2015, 09:11 AM   #7
Her_Thing
 
Join Date: Aug 2015
Location: United Kingdom
Hi
Thank you for the welcome. Not sure what to make of the cake recipe but then again I know I have a lot to learn about what I am going to be able to eat and what I am not... I love chocolate cake too!
You are both right about being thankful for the little things and valuing what we do have and are able to experience...it has been my mantra for a long time. I am at a bit of a low point right now but will bounce back once I have got my head wrapped around all this. I am thankful to have found this forum and have learned so much already just by reading.

Thanks again. x
08-17-2015, 09:32 AM   #8
scottsma
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Location: Tynemouth, United Kingdom

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Hello and welcome to the forum.I see you are in the UK so you will know that everything takes an age in the NHS.Appointments,diagnosis,consultants,meds,more tests and on it goes.Please don't worry to much.This dratted disease treats us all differently.I was diagnosed in 2006 with Proctitis,which has been managable,apart from flares every once in a while.It has only recently progressed to Crohns Colitis.Of course there are a lot of very sick people on the forum,but we listen,advise and support each other when we can.
So like everything in life,just take it one day at a time.Your loneliness and grief are enough to contend with, and there will always be someone on-line,day or night to listen.
08-17-2015, 11:33 AM   #9
Her_Thing
 
Join Date: Aug 2015
Location: United Kingdom
Hi and thanks for your reply. Yes, I am in the UK (S.Yorks) and unfortunately well versed in the workings of our NHS. Wouldn't be without it though... I just wish they would be a bit quicker to react and explain sometimes. Ah well I guess I will just have to muddle through and wait. It is good to know there are people here to turn to through the confusion though. Thanks again. x
08-17-2015, 12:12 PM   #10
Bunty
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Join Date: Aug 2014
Location: UK
I'm so sorry for your loss HerThing, I can't begin to imagine how you must feel.
You'll get your head round your crohns diagnosis, it just takes a bit of time to come to terms with it and realise it's not the end of the world.
As for food, I was told right at the beginning that there is no food you should avoid once you're out of a flare, you can eat normally, anything and everything...unless it gives you problems. Lots of people who don't have crohns avoid various foods because of indigestion, etc., so that's how you should look at it. And then you just avoid that food.
It's different during a flare though, and I'm sure you'll be given loads of helpful information once you see the IBD specialist nurse in clinic. You'll be given a 'flare line' telephone number once you've seen her, it's a godsend and the first port of call for any problems/questions in the future.
I too am in the UK, also oop north but on the west coast, currently in Berkshire in my static 😀
Good luck with it all,
Bunty x
08-17-2015, 12:29 PM   #11
Her_Thing
 
Join Date: Aug 2015
Location: United Kingdom
Hi Bunty and thank you for your reply. My reading has told me pretty much the same thing re foods. The last few weeks have been horrendous with toliet trips around twenty times per day. Where it all comes from I have no idea as eating has been difficult and pretty haphazard. I have lost a lot of weight and weigh less now than I did thirty years ago! As hard as all this is, I am not one to curl up and feel sorry for myself although its hard not to sometimes. I have made some dietary changes recently (sticking to chicken/rice/egg) and that seems to have helped presumably because my bowel doesn't need to work so hard. It is good to know there will be a specialist nurse to turn to, I hadn't realised that would happen. Quite a relief too as I know I am going to have quite a steep learning curve and lots of questions. Have fun in Berkshire and thanks again for responding. x
08-18-2015, 01:11 AM   #12
Bunty
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Join Date: Aug 2014
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I got my initial diagnosis last year immediately after having a colonoscopy, I came away from the hospital with the colonoscopy report in my hand stating 'definitely UC and probably Crohns' and suggesting Pentasa. I saw my GP the following day, took the report with me in case she hadn't received her copy, which she hadn't, and she immediately started me on Prednisolone and Pentasa, I didn't have to wait for biopsy results.
My GP also got in touch with the IBD nurse who called me at home and was very supportive, said I needed a larger dose of Pred than the GP had put me on, and also gave me lots of dietary advice. The nurse faxed through to the GP to tell her what to increase the Pred to.
It's a shame you have to wait for the biopsy results before you can start on some meds which will help get it under control, your bathroom visits sound a nightmare. Do you have a good GP? Maybe a visit to them would be helpful.
Yes, the bland plain food definitely helps, boring as it is. I found soft, over cooked carrots helped, they are apparently good for you and add a bit of colour to the plate, quite nice when mashed into mashed potato too😋 And thick white bread toast, it really goes against the grain for healthy eating but does the trick to help bung you up.
Bunty x
Ps. You're lucky with the weight loss, if you're happy with it of course. I have the opposite problem and have put a stone on since this latest flare started at the beginning of June 😕

Last edited by Bunty; 08-18-2015 at 01:26 AM. Reason: Added a PS
08-18-2015, 11:03 AM   #13
Her_Thing
 
Join Date: Aug 2015
Location: United Kingdom
Hi Bunty,
Wow you are lucky with your GP. To be honest I haven't a clue what my GP is like... I don't even know who he/she is!!! I moved back to my home town recently and had to register with a new practice. My former GP (from before I moved away) had retired and a new clinic built in place of the surgery I used to attend. I don't have a named GP now and if I need to see a doctor I could end up seeing any one of about eight of them who work in the practice. Fortunately the doctor who I saw about my GI problems was on the ball and sent me straight for further investigation with the hospital. There I saw a colorectoral nurse specialist who organised a CT scan and colonoscopy which happened within days. The colonoscopy was last Wednesday where the same nurse specialist told me from what she could see it was clearly Crohn's disease and that she had checked the CT report which confirmed her findings. The biopsies would give further confirmation and what happens next would be decided when the histology report was received. In the meantime she would refer me to a specialist gastrointerologist. That's where I am at... waiting for someone to contact me.
I suppose the weight thing is good in a way, though having lost in excess of two stone I don't look healthy even though the BMI says I am lol. The trouble is the weight is continuing to fall at a rate of about 4lb per week and if that continues it won't be long before I am technically under weight. I just hope I am not left waiting too long before I have a better idea of how I proceed. I feel so tired all the time and yet struggle to sleep well at night. I am uncomfortable, unable to eat much and mentally I am shattered. The toilet trips have subsided thankfully but over the last day or two I feel the need to go but can't (or at least not easily) because its rather painful. Oh boy this is fun!!!
08-18-2015, 12:05 PM   #14
Bunty
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Join Date: Aug 2014
Location: UK
Oh dear, sounds not altogether ideal under your circumstances.
To be honest, I've learned to be much more proactive with me health over recent years, and don't now wait for things to happen.
My suggestion would be to get to the GP who you saw over your GI issues, or any doctor at the surgery, and tell them all that's been happening, and how awful you feel. Crohns brings with it a raft of problems, some of which can be identified by a blood test done at the surgery...low Vit B is a common problem which causes a kind of anaemia which itself causes huge fatigue and is easily sorted by injections.
Your GP will also have the flare line number, a call from you to them will provide you with lots of information and hopefully the IBD nurse will get on your case and get things moving as she can speak to the colorectal nurse who actually told you it's crohns.
Losing weight at the rate of 4lbs a week when you're not trying to is a lot, I'm sure a GP would be concerned about it that and want to do something about it.
Sorry, it must sound as if I'm being very bossy, telling you what to do, please ignore me if you're not comfortable with my suggestions 😉 I just hate the thought of you struggling on if there's something which can be done to move things along.
I wish you all the best 😊
Bunty x
08-18-2015, 12:47 PM   #15
Her_Thing
 
Join Date: Aug 2015
Location: United Kingdom
"Sorry, it must sound as if I'm being very bossy, telling you what to do, please ignore me if you're not comfortable with my suggestions."

Oh Bunty don't worry about that I am open to any and all suggestions. Two years dealing with cancer tends to teach you to be proactive too. It is a little difficult under this new GP practice though simply because I am still finding my feet there. To get an appointment I have to call at 8am and keep trying until I get through. They have a telephone triage system so you have to explain things first to the receptionist. They then get a GP to call you who then may or may not agree to an appointment. (Obviously depends if he/she can sort things out without an appointment).The benefit is that if you are to be seen it will be the same day. Though not necessarily with the GP you just spoke to. It could be a different one as it was for me the first time I went. That's three times explaining your situation to three different people and of course talking about my issues with a receptionist is not ideal. Still, I think you are right. I need to see a doc and get things moving (excuse the pun). I will get on the phone tomorrow. Thanks for the push. x
08-18-2015, 01:23 PM   #16
Bunty
Senior Member
 
Join Date: Aug 2014
Location: UK
That 8am redial to get through is a real pain isn't it? I was once the first of the day to get through...yay me!! 😀
Seriously, I really hope you get some help from the GP, sounds like you really could do with the support 😕
Bunty x
08-21-2015, 02:10 AM   #17
Bunty
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Join Date: Aug 2014
Location: UK
HerThing, just wondering how things are and if you decided to try and get an appointment or didn't bother, sometimes the hooha you have to go through when you're not feeling very well puts you off doesn't it?
Hope you're feeling ok.
Bunty x
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