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01-02-2016, 05:03 AM   #1
Wife83
 
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Breaking point

I am new on here. I have been avoiding this forum as my husband (Crohn's) uses this forum too. Now I am starting to really not care as I need to speak to people in my situation. My life revolves around Crohn's now. My life is dependant on how my husbands stomach is and whether 18 hours sleep has been enough for him or not. I am trying my best to be supportive but I am loosing the battle.

My husband has always had gastro problems for his whole life. He was finally diagnosed with IBS when he was a teenager and this prevented further investigations for many years 'its only IBS deal with it'. Finally two years ago things go so bad the doctor was worried about stomach cancer and the hospital got involved. Turns out he had stomach ulcers as a result of abusing Nurofen Plus which he was self using to treat his stomach pain. The ulcers went and then he got ill again 6 months later (this time no Nurofen plus I made sure of it). This time the hospital was more thorough and Crohn's was diagnosed. We existed through steriods (steroid pyschosis is very frightening to watch) and him being off work for 6 months and basically sleeping for 22 hours a day. He has no memory of this time but I do. The lonelyness of an house with noone to talk to, having a husband who only has his 'awake' hours when you are asleep (nothing personal apparently but it really feels like it). Now he is back to work and we are in 'remission'. So why do things feel like nothing has changed? He still sleeps when I am awake and goes to bed when I am asleep. I cannot ask him how he is feeling or he will bite my head off for asking 'i was fine until you reminded me'. He still throws up after eating, still complains about stomach pain, still has a go at me for the situation he is in. I am trying my best here I am trying to not voice any of my distress to him -I know it is not his fault he is ill but it is driving me mad that he will not do anything to help the situation. For example he smokes . His gastro has told him to stop smoking, his IBD nurse has told him to stop smoking. The have told him the benefits he will get if he stops smoking. He promised he would quit this Christmas holiday. Nope still smoking regardless.

What has broken me this morning is that I had to go through the rubbish bins today. (Not a crazy stalker had a lost piece of post to try to find and after searching the house the bins were the last resort - still feel sick!) He has always been secretive about his office. There are drawers I am not allowed to open and he always throws out his rubbish every day triple wrapped in bags so the contents cannot be seen. Oh and he also takes out amounts of cash from our account on a regular basis. I have asked him about this cash and he says he like paying in real money occasionally. So anyway in one bin bag one of his rubbish bags had been ripped and I cried when I saw what was inside. Two boxes of Nurofen Plus. The big boxes. I looked in another bag of his more nurofen plus boxes - this is along side the codine he gets on prescription from the GP. Looking at the pharmacy stamps on the boxes on a day he had picked me up from work (x mas bus problems) he had gone from pharmacy to pharmacy buying the tablets from each one - obviously using the cash so no transactional trace for me to see. This just made me see red. The stomach pain I have been so sympathetic about he is taking NSAID's when the hospital has told him never to take ibuprofen again because of stomach ulcers. The constant sleeping - not a surprise considering his nearly overdosing on codine every day. He is an intelligent man he knows what he is doing. It just feels like everything is being thrown back in my face. My life is being destroyed by his illness and he is going nothing to help the situation. I am on anti-depressents, I have been through counselling. I spend my life alone while he sleeps worrying about him and he is doing this in the background.

I am waiting for him to wake up to challenge him about these and I am definitely going to grass him up to his gastro when we are at the hospital next week. I just feel such an idiot for trusting him to look after himself but what can I do - take his money away from him? Take his car keys away? He is an adult and it is his own health he is making worse. I know he is an addict - addicted to smoking, codine god knows what else. I have asked him in the past about his codine intake - whether it is for pain or just for the codine and he did not know. I am just so angry at the moment. He will have zero sympathy should he get ulcers from this!
01-02-2016, 09:04 AM   #2
ronroush7
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I am so sorry for what you are going through. Are there any other people on here who have gone through what she is going through who can help?
01-02-2016, 09:38 AM   #3
Christi
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Wife83 i am sorry that you have to go through this. Can you talk to him? Codein are not good for crohns if he is in that much pain he should talk to a Gi. Can you get him to go for counseling? Best wishes and i hope everything gets sorted soon
01-02-2016, 11:37 AM   #4
Wife83
 
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Thanks for the reply. He finally woke up after a 18 hour sleep and I told him about the boxes. He said he had no choice but to use nurofen plus as you cannot buy straight codine from the pharmacy without a prescription and the amount the doctors are prescribing him is not enough to deal with the pain. He says he does not want to return to spending hours a day on the toilet having bloody (haemorrhagic if forum blocks swear words) diarrhoea. The codine works as a binder to stop diarrhoea so he uses it also for this purpose. He says stomach ulcers can be treated with PPI's which is already on and he would rather that over diarrhoea. His doctors attitude seems to be 'you have a chronic condition -just get used to the pain'.

This is what I do not understand. The doctors need to know about his symptoms - his true symptoms. He is supposed to be in remission but how much of this remission is just the side effects of drugs? He does not know if he still has bloody diarrhoea or how painful his guts really are because he has so much codine in his system. So he says to the doctor 'I am fine' but really he is not.

Still very disappointed with him. However have hospital appointment with his gastro next week. The thing is the gastros are so dismissive. They just want to get you out of the door as soon a possible. They do not deal with 'hypothetical issues' ie what other treatments would you be looking at if he was to flare again. My husband does not like being 'weak' infront of other men so just says everything is fine. Plus I think he feels bad talking about his bowel habits with strangers - he hates talking about it to me. I have no such problem - doctors need to know you bleed when you go to the toilet! However the doctors only seem to listen to him and not me - just ignore the pushy wife the patient says he is fine so we will see you in another three months!

I just wish there was an end in sight with this I miss the days where I had a husband around for more than a few mins a day. I miss going out and having a life with him.
01-02-2016, 12:30 PM   #5
ronroush7
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I wonder if he needs to go see a gastro specialist?

01-02-2016, 12:35 PM   #6
Agent X20
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I know very little about addiction, but it does seem that your husband has problems with addiction... with smoking and with strong painkillers, both of which are harmful for crohns. He's lying, hiding stuff and then getting angry when challenged (if I understand your post correctly). None of that is a very good sign. Personally, I don't think it's sustainable to go on like and something has to give.You really need to lay it on the line with the GI, including grassing your husband up and telling the GI what's really going on.
I had some issues with depression five years ago and I was in a rut... my wife came to the GP with me and told it like it was (and a bit of sobbing helps.... seriously) and I've never looked back since.
I think it will all require a bit of mental strength from you, and a bit of tough love... so best of luck with all that and I hope it's all resolved.
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01-02-2016, 01:31 PM   #7
Christi
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Codein makes the symptoms worse , i agree with Agent X20 go with your husband insist that they do something and get them to give other pain meds and in remission with pred and stuff. Also ask about pain management and i do think counseling can help him deal with this. Dont let them dismiss you, you do have a right to say something. If he gets the meds and help he needs he will get better soon. Tell the GI everything all of his symptoms. When are your appointment next week?
01-02-2016, 01:32 PM   #8
ronroush7
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Codein makes the symptoms worse , i agree with Agent X20 go with your husband insist that they do something and get them to give other pain meds and in remission with pred and stuff. Also ask about pain management and i do think counseling can help him deal with this. Dont let them dismiss you, you do have a right to say something. If he gets the meds and help he needs he will get better soon. Tell the GI everything all of his symptoms. When are your appointment next week?
I agree

01-03-2016, 03:19 AM   #9
Wife83
 
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Thank you for the replies. I did not know that codine is bad for Crohn's. Will have to bring it up at the appointment. He is not allowed to have any more pred after having steroid psychosis when on it for the first time. The worst thing is the pred worked on his bowels but mentally - god it was scary. He actually tried to kill himself and it was like living with a total stranger. He started sleep walking too and I never really knew if he was awake or sleep walking as he would have full conversations that he would have no memory about. He has no memory for about 6 months. Unfortunately I do remember! This is why the doctors annoy me with their refusal to talk about hypotheticals. In my view when he is ill and needing treatment is not the time to be talking about alternatives to pred. We need to know in advance what alternative steroid or treatment they are thinking about so a decision can be made rather than rushed during a hospital appointment.

Both back to work tomorrow so hopefully some routine will make it easier to get 'tough' with him again

Think today I am going to start writing everything down for the gastro appointment on Thurs. There has to be more to life for people with Crohn's than sleeping 18 to 20 hours a day and not eating.
01-03-2016, 06:45 AM   #10
ronroush7
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Thank you for the replies. I did not know that codine is bad for Crohn's. Will have to bring it up at the appointment. He is not allowed to have any more pred after having steroid psychosis when on it for the first time. The worst thing is the pred worked on his bowels but mentally - god it was scary. He actually tried to kill himself and it was like living with a total stranger. He started sleep walking too and I never really knew if he was awake or sleep walking as he would have full conversations that he would have no memory about. He has no memory for about 6 months. Unfortunately I do remember! This is why the doctors annoy me with their refusal to talk about hypotheticals. In my view when he is ill and needing treatment is not the time to be talking about alternatives to pred. We need to know in advance what alternative steroid or treatment they are thinking about so a decision can be made rather than rushed during a hospital appointment.

Both back to work tomorrow so hopefully some routine will make it easier to get 'tough' with him again

Think today I am going to start writing everything down for the gastro appointment on Thurs. There has to be more to life for people with Crohn's than sleeping 18 to 20 hours a day and not eating.
Agree with you.

01-04-2016, 03:51 AM   #11
Christi
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I agree to write everything down and to get this sorted out. Best to you and your husband please keep us updated
01-07-2016, 01:47 PM   #12
Wife83
 
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Well todays consultant appointment could have not have gone better. I was all prepared for an argument at the hospital and yet the doctor was 100% on the same page as me. We see a different gastro every time we come in and this doctor was far more proactive than the others who would not consider future treatments. This doctor immediately started by telling my husband that he needs to treat his Crohn's and that all he is doing at the moment is just using a 'sticking plaster' to hide the problem. He very bluntly explained the issues of smoking and Crohn's and codeine and Crohn's and gave us the offer of immuno drugs (as husband had steroid psychosis he cannot use them again) or a chat with the surgeons about what they could do to help. Husband is scared of the thought of an operation but as the doctor said it better to have the surgery done by choice than waiting for a stricture to happen and then emergency surgery. It has been left that husband can call the IBD nurse at any time to arrange an appointment with the surgeons.

The doctor gave us leaflets about the immuno drugs and we have a plan of action now (husband is unhappy but can see the good sense) which the doctor has agreed with.

1. Stop smoking and reduce codine to minimum. If we are lucky the no smoking may help his crohn's.
2. If no improvement from no smoking, provided the blood tests are ok, start the immuno drugs. Maybe these will help!
3. All else fails surgery.

So this should keep us busy for the rest of the year. It feels good to have a plan of action rather than waiting for him to get seriously ill again. He is also being refered to Rheumatoid team for the joint pain he has started getting over the last few months.

I think I will just hide away while he stops the cigarettes and codine. I cannot see him being very happy (understatement of the week!) The withdrawal starts on Saturday. Deep breath.
01-07-2016, 02:10 PM   #13
ronroush7
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Glad the doctor said what he did. Wishing you the best.

01-08-2016, 12:40 AM   #14
Christi
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Im happy that you could get this sorted out and the doc understands you. Now your husband can start feeling better and both of you can get through this. If you have any questions feel free to ask anytime. Best wishes for you and your husband
02-18-2017, 09:34 PM   #15
muffin101
 
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Thank you for posting your story. I have no advice, but a similar situation, and it's really good for me to know I'm not alone - your post really helped me, and I wish I could help you back! How did the withdrawal go?
02-18-2017, 09:50 PM   #16
cmack
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Codeine is nothing hard to quit for me at least. It's the nicotine that is hard. I finally did it but I was super cranky for about a five day period.

wishing you the best,

cmack
02-18-2017, 11:53 PM   #17
muffin101
 
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Well done! I've quit smoking myself, to help inspire my partner, but I'm now ridiculously addicted to nicotine mints. Ho hum. Congratulations on nailing it.
02-19-2017, 12:19 AM   #18
cmack
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Thanks Muffin,

You have to do it because you want to. Mints are still better than ruining your lungs. I hope you get off the nicotine eventually. Just take it one day at a time. You are headed in the right direction in my opinion. After a while you don't even want it any more.

best wishes,

cmack
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