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08/22/2009 02:41 AM

Hi everyone - this is difficult for me sorry

heedie6
Posts: 6
New Member

I have had crohns on and off since I was diagnosed at 20 and I am now 60. Until 2007 despite two operations and constant blockages I have had a really good life and was proud of the way I had dealt with my Crohns. I was actually in remission for nearly 20 years!! Last year I became desparately ill and at this stage I don't want to go into great detail. I believe that what has happened to me is rare and don't want to frighten unnecessarily fellow Crohns sufferers who may never ever go through what I have. The problem is I need to talk to a fellow sufferer. I am incredibly lonely as I am at home all the time. Despite what I have been through I am naturally a jokey happy person but I have had to completely rethink my life - all my dreams and goals have gone and I am trying to have new ones. I need to talk to others on TPN (total parenteral nutrition) and with fistulas. Is there anyone with similar problems? Do you think talking on a forum about really serious but rarer conditions that can be read by others irresponsible as it can cause them needless worry for themselves? Unsure
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08/22/2009 02:48 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

Hi and welcome to the group. There is probably nothing you can post here that someone out here has been thru with crohns. I've personally seen my body do some pretty painful and gross things with this disease. Had my first abdominal abcess in Nov 08 and it was horrifying to me. I thought nothing worse could happen. But I have managed that and moved on. Never expecting what will happen next. Just won't let myself get to worked up over anything. I had a colostomy in my 30's and that was different, still have it! But no I don't believe posting here can scare anyone with crohns. Think it is good for others to know what can possibly happen so they don't think its only them who are having all these symptoms. Smile

08/22/2009 03:10 AM
heedie6
Posts: 6
New Member

Thanks libit,

The way I have got through over the years is by almost pretending there was nothing wrong with me. I was careful with diet but that was all. My medical knowledge about the disease is almost zero because of my attitude and maybe contributed partly to last years problems. You say you have a colostomy. I have an illeostomy which they may reconnect but I actually don't want them to as it does not worry me - I call him Eric - do you have a name for yours? This sounds mad but I believe lots of people name them and it does help. He is quite a character and there have been some hilarious moments. I have 3 fistulas also named - Gertrude on my rear end - Fiona in my pelvic region and Bert who is where my belly button used to be he is my largest but over the last 12 months has become a lot smaller though I am told that he is unlikely to heal completely. He is my biggest problem as I get third degree burns very regularly from stomach acid leaking which means I cannot then put a bag on him until I heal. He is extremely active as up to 2 litres comes out of him a day. My stoma does very little. This is why I rarely go out. I am on TPN 14 hours a day and though I now get no benefit from food and drink orally I am allowed to eat and drink a little so I could still socialise. I have a Hickman line in my chest for my feed. Where are you from libit I'm in the UK. I'm sorry you have also had problems I have learnt that there is always someone worse off and we all handle things differently. Hell I sound miserableSick


08/22/2009 03:20 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

I think everyone who has crohns tries initially to put it out of their mind. We also seem to think everyone else is worse off then we are. But we are all pretty bad off when the flares come on. Don't beat yourself up over going thru this alone. This site has helped me dealing emotionally with this disease. I've accepted my stomie and I have lots of names for him but none I can mention here. lols' He tends to give me quite a few issues and sometimes I feel like yanking the appliance off and hurling it as far as I can. I would be scared of going back to the toilet on a very regular basis without him. Yes, it is a him. Reading your post makes me feel I haven't been thru as much as you have so see we all seem to think that way. Find your way thru the posts here and you'll be surprised how many of us go thru quite a bit dealing with crohns. It can wear on you emotionally and physically. Not to mention the anxiety added on top of having the odd sounds you cannot control with the stomies.. lols

08/23/2009 03:55 AM
heedie6
Posts: 6
New Member

Thank you Nick333

I am so sorry that you are suffering. I was lucky because I had a pretty normal life for 40 years and didn't suffer as much as most. I had no idea that this disease could become so horrible though I had found I could not have life assurance or health insurance (other than through employer). I began to have far more pain in 2007 but carried on working very long hours (self employed)and managed to last until January 2008 and then had just 12 months of pure hell. Actually though I have fistulas, a stoma and I am on TPN and have quite a lot of pain and discomfort I can cope with this. I laugh and joke about it but my main problem is the hell of last year has left me traumatised. And of course I am lonely being homebound. I am determined to get back to work - have a dog and some degree of social life. It has been proven to me that the fear of what may happen to you is worse than when it actually happens. My TPN consists of 6 2-3 litre bags of fluid delivered once a week (I have one day off - yippee). This is taken intravenously through a line in my chest which could last up to 3 years providing you don't get a dreaded infection then they have to remove it and put in a new one. I have one bag a day infused over 14 hours. I go on my feed at 8pm and so sleep during most of it. These bags give you all the chemicals, vitamins and saline that you need to keep reasonably healthy. I do eat though smaller meals than before and I am allowed e.g. 4 cups of tea a day. If I get dehydrated I have to sling up a bag of saline. I have a backpack to put on if I want to go out whilst on my feed. Its important to keep eating otherwise you will find you lose the ability. I met a poor lady on TPN who hadn't eaten for 16 years and its the social side of eating that you miss as much as the lovely tastes. I am amazed at how both my hubby and I have adjusted. He helps me a lot and though he finds it difficult he still tells me I am beautiful and he loves me every day. Despite my tummy looking like roadkill. Anyway I love your fighting spirit and do you know I have yet to meet a nasty Crohns sufferer.


08/27/2009 10:55 PM
CrohnsFML09
CrohnsFML09  
Posts: 36
Member

So, not gonna lie this is scary. Im a planner so when I heard about the disease and learned that I had it, i searched high and low on all the information on it and how its gonna effect my future. Im20 years old and am already scared shitless of what could happen to me. I look up to all of you who hold a positive atittude because it is so hard to do so and im still at the early stages. I wonder how life goes one with this disease because, right now I am stuck in a house or in hospital watching my life pass me by... I want to feel normal again !!

08/28/2009 03:52 AM
heedie6
Posts: 6
New Member

Hi, Please do not worry. You are doing the right things. I had my first op at 20 for Crohns and had no idea what the disease was all about. I should have looked into it more. Of course there weren't these forums then but I should have kept on top of the disease. Despite not doing so I had 20 great years. My condition now sounds really scarey but its not as bad as it sounds and I am only at this point now because of a useless Consultant. Yes I get down but this is more through loneliness at the mo. I am keeping my fingers crossed for a repair op that is supposed to happen Dec/Jan - I will find out in October. Then I hopefully will be left with just the stoma and TPN. Attitude and knowledge are incredibly important. I laugh and joke with Doctors and Nurses when they deal with me I make myself think of things from their point of view. They don't want to hurt me or see me like this. So I joke to make them feel better and I try to be as brave as possible so they don't feel bad when they carry out a procedure. I know this is not easy but strangely it makes me feel better too. I am an extreme case and, though of course there are others, for every one of us there are thousands who have a very happy life and never get to anything like this stage. So please don't worry. Gain the knowledge from people on this site and think 'hey they are managing so could I' and it probably will never happen. I have masses to be thankful for and definitely there are worse diseases still out there.Smile
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