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01-05-2014, 07:12 AM   #61
lizbeth
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Happy New year everyone, I hope that 2014 is a better year than the last and that it brings you all good fortune.

How is everyone these days, Upsetmom how did the appointment about your dad go, what was the outcome of the scan?
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01-05-2014, 03:05 PM   #62
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Happy New year everyone, I hope that 2014 is a better year than the last and that it brings you all good fortune.

How is everyone these days, Upsetmom how did the appointment about your dad go, what was the outcome of the scan?
Happy New Year!

My dad had a long wait to see the neurologist but things have moved quickly since then.. Hes going into hospital to get the fluid pressure checked....Hopefully before the end of the month. The neurosurgeon wants to make sure his problems are caused by the fluid, if they are he'll be getting a shunt put in. In the meantime hes getting a lot worse and starting to drive my mum crazy.
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01-06-2014, 04:25 AM   #63
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I am sorry to hear that, I really hope the appointment comes quickly and he can get something done that will help you all. Oh I do feel for you and your poor mum, take care.
01-06-2014, 04:35 AM   #64
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nice discussion thanks this is very helpful for me
01-17-2014, 10:11 AM   #65
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I'm sorry but I need to have a bit of a vent so you can switch off now, if not I thank you for reading.

My dad is unwell with a variety of physical and mental conditions with mental conditions being the most difficult to deal with. He has always had these issues but they have gotten much worse since my mum passed away nearly 5 years ago (think she protected us from a lot of it). In this time I have done my best to do what I can for him, I'm named as his next of kin, I deal with all the healthcare providers and I have spent so much time with him that my own family said I should just move in with him cos I was never home . I've also had to deal with my little sister sho has mental problems too. She has only within the last year or so got actively involved with his care, until then it was always left go me.

My gripe is that she keeps saying it's all left to her to do which is so untrue, when she says it I try really hard to say nothing so as not go upset her any more because I know she's not mentally well, but it makes me very important she says. I'm not wanting a medal for what I do but I also don't want to be made to feel I do nothing, that's the job of our older sister who really does nothing.

I realise reading this back to myself that I sound unfair go her and that it shouldn't be as upsetting as it is. I just don't know what go do for the best anymore ........
01-26-2014, 03:26 PM   #66
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My dads getting his procedure done on Wednesday.
Finally we'll know if this is caused from the fluid or if something else is going on. In the meantime he is going downhill so fast.
01-26-2014, 03:52 PM   #67
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My dads getting his procedure done on Wednesday.
Finally we'll know if this is caused from the fluid or if something else is going on. In the meantime he is going downhill so fast.
I'm so sorry to hear that , will you find out straight away or will u have to wait to find out?
01-26-2014, 04:01 PM   #68
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I'm so sorry to hear that , will you find out straight away or will u have to wait to find out?
The pressure will be monitored for 24hrs in some device. l don't know how they'll keep him in bed for that long, we're worried he might try get up and leave.

We go back to the Dr 3 days later for the results.
01-26-2014, 05:52 PM   #69
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I'm sorry you're dealing with that lizbeth. I know the feeling so you're definitely not alone and certainly not a bad person for feeling that way. I forget who said it to me, maybe my mother in law, but in the end you know how much work and effort you put in so try not to let what anyone else says affect you as they have no idea because they weren't there.

I'm sorry you're going through this upsetmom.
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02-03-2014, 05:12 AM   #70
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The pressure will be monitored for 24hrs in some device. l don't know how they'll keep him in bed for that long, we're worried he might try get up and leave.

We go back to the Dr 3 days later for the results.
How did it go at the hospital?

My dad's still in hospital, he rolled out of bed Friday night and gave himself 2 black eyes, since then he's not been right. I spent most of yesterday with him and went with him to ct cos he had been too agitated to have one in the early hours of Sunday. Seems he has a bleed on the brain which correlates with where he got hurt, Neuro don't think it's bad enough to cause how he is and probably an infection is partly to blame but it's still a bit of unknown atm. Going back to the hospital later and stay up for a couple of days.
02-03-2014, 02:57 PM   #71
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How did it go at the hospital?

My dad's still in hospital, he rolled out of bed Friday night and gave himself 2 black eyes, since then he's not been right. I spent most of yesterday with him and went with him to ct cos he had been too agitated to have one in the early hours of Sunday. Seems he has a bleed on the brain which correlates with where he got hurt, Neuro don't think it's bad enough to cause how he is and probably an infection is partly to blame but it's still a bit of unknown atm. Going back to the hospital later and stay up for a couple of days.
The hospital stay was a nightmare.
When he woke up he kept trying to pull everything off. This went on all day and night. I asked for him to be sedated but it wasn't an option as they had to keep him awake for 24hrs just in case of a bleed. They actually had a security guard sit with him all night.

I'm glad its over. Appointment with the surgeon isn't till the 13th. We should have an answer then.

I'm sorry to hear about your dad..
02-05-2014, 01:48 PM   #72
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How's your dad lizbeth?

My dads going downhill by the day. Just before he went into hospital he started to hallucinate and its getting a lot worse. Yesterday he was hysterical, he kept screaming, crying thinking someone was out to get him. It took all day to calm him down. I'm going to try getting in touch with his psychiatrist today.
This has started to take a toll on all of us, its not easy to deal with.
02-06-2014, 04:24 PM   #73
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How's your dad lizbeth?

My dads going downhill by the day. Just before he went into hospital he started to hallucinate and its getting a lot worse. Yesterday he was hysterical, he kept screaming, crying thinking someone was out to get him. It took all day to calm him down. I'm going to try getting in touch with his psychiatrist today.
This has started to take a toll on all of us, its not easy to deal with.
I think when a parent becomes the vulnerable one it's very difficult to accept and to deal with, when you become the person that is the one saying "the bogey man isn't hiding in the closet" you know you have a problem.

Upsetmom I'm so sorry that your dad is going down so quickly, I pray that this is just a blip and that he gets over this episode. It's happened before with my dad and it seems to be that way again. He is still being looked after for all the same reasons but the hospital appear to be content with progress so far. He is to have a 3rd brain scan on Monday and we shall take it from there. I came home for a couple of days, it's my eldest daughter's birthday tomorrow , back up to Belfast on Sunday.
02-10-2014, 05:19 PM   #74
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Update after today's scan is that bleed has got worse so dad is to be moved to another hospital to undergo brain surgery to drain the bleed. I was with him when he got the news and we were both rather shocked. It's kind of strange that he has said for years that he doesn't want to be alive yet he reacts badly when he gets bad news. I can't help but wonder too at a man of his age and poor health being put through this type of surgery?
02-10-2014, 05:36 PM   #75
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..I'm so sorry to hear about your dad. I hope everything goes well with his surgery.

My thoughts are with you.
02-10-2014, 05:50 PM   #76
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Thank you. Well be thinking about you on the 13th.
02-13-2014, 01:04 AM   #77
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My dads been diagnosed with Normal Pressure Hydrocephalus. Surgery to get a shunt put in should be done within 3 months.

His Dr said we should see a 90% improvement .....so there might be light at the end of this tunnel.
02-14-2014, 05:13 PM   #78
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That at least sounds more positive especially as they have a plan on how to move forward, I really hope the surgery is dinner rather than later .

My dad has finally been moved to neurosurgery, well is being moved right now, so hopefully tomorrow night tell us what is likely to happen next......yipee.
03-03-2014, 02:01 PM   #79
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Dads been in hospital for nearly 2 weeks now as he was very disorientated and agitated. Surgeon has decided to operate tomorrow.

I won't be here as l have to take my daughter to see the Endocrinoligist and the GI. I was going to change the appointments but an ultrasound for delayed periods showed no uterus...I'm obviously worried sick over this and need some answers.

How's your dad going lizbeth?
03-04-2014, 05:26 AM   #80
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Surgery's been postponed. He started getting a lot of pain under his right ribs, blood test showed elevated white cells and abnormal liver function so they're doing an MRI tomorrow to check the gallbladder.
03-06-2014, 03:30 AM   #81
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Life is crap lately. Grandpa is talking about wanting to get a knife for "protection" against his own son (my uncle who had to move back in with them because he's disabled, physically not mentally). Since my grandpa does have brain damage I do think that he would stab my uncle or try to if he got a hold of a knife.

My grandma is hard of hearing so my uncle has to raise his voice so she can hear but it gets frustrating so sometimes you do yell a bit but all my grandpa hears is raised voices and yells at my uncle to stop yelling at my grandma. Plus my grandma makes up stories to get sympathy or create drama in the family, to give her something to do I guess since she hasn't left the house in the past 30 years or so. This family is just deteriorating.

I started taking Klonopin twice a day again and it has helped but sometimes everything is just too much. The housework can wait in my opinion. I'm on SSI and ever since I got married Social Security started taking out money based off of my husband's part time job. In a way I do work by doing my best to keep the forum running, researching, tech support, problem solving and so much more. I thought about getting off of disability and try working but then both my husband and I would make too much money and would both lose Medicaid. We need the insurance cause we're both fucked up. Plus I need to stay disabled for another year and a half at least to wipe my student loan slate clean. I honestly don't know if I could handle working anyway but the extra 40 bucks for working twice a month by helping out my grandparents isn't cutting it (my dad was laid off a while back and he took my job basically).

Thanks for letting me get this off my chest. Crohn's wise, still in a flare and tired as hell.

Good news is that Medicaid is bringing back the dental plan May 1st so I'm gonna have so much work done you wouldn't believe. Also on the 21st this month I'm getting my eyes checked to get a new prescription for my glasses since my eyes are getting blurry again.

I've also been looking for doctors for my mom to help with her diabetes (I just found out that the doctor she sees is an Osteopath, the fuck, she didn't even know or knew what one was). She told me to not go changing doctors on her without her permission. The fuck? She's been hanging around my grandma too much. I also make doctor appointments for my husband cause he's too busy with work.

I guess I'm just letting you all know that I'm really busy. Thank you for all of your help guys. I really do appreciate it.

Also today is my 16th day without a real cigarette. I switched to an e-cig. Still has nicotine but I can mix the liquids and make the dose higher or lower depending on how I'm doing and I have a second one with about 3mg of nicotine (the other has a little over 12mg) so I can eventually start tapering. It's cheaper in the long run too. I couldn't afford cigarettes anymore in the first place and my husband felt bad so with the little money he has from his part time job (and I think from his tax return), he bought them for me. I also joined an e-cig forum to get help with any details and support in that department. So far so good. With all this going on, I can't stop the nicotine just yet.
03-22-2014, 11:35 AM   #82
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I posted this in my other thread about my Grandpa's stroke and all that I've been through from that but thought I should mention it here as well since this support group is for caregivers, not just about who they are caring for but how it's affecting them both physically and mentally.

Grandparents are still alive. They fight often (yelling usually) or the lovely one about not being able to see the urinal and being so upset that my grandpa threatened to throw himself onto the floor and did so right after. If I were still living there, things wouldn't be as bad for them but my life would be complete crap so fuck that.

As for me, I can no longer do any minor lifting at all. Last time was last Friday on my Grandma's birthday, we took them out to eat. At most now I'll clip his fingernails but that's it. It's possible that I may need back surgery at this point because something is pressing on a nerve so badly that my left leg goes completely numb in the night and when I wake up and move, it feels like I'm being branded with a hot poker on the surface of my thigh so I wake up my husband by screaming in pain. It also goes numb while standing, sitting, walking, any position but laying on my right side (which makes my back go numb, no winning here). Once my left leg has gone numb long enough it leaves lasting pain like some sort of welt in my thigh (it's doing it right now).

I'll be having an MRI on both my lumbar spine and my pelvis to see if they can find the cause. If nothing of note shows up in the MRI then I'll request another MRI for the middle of my back (since it also hurts and goes numb there, I've had an MRI there in the past which showed two bulging discs touching my spinal cord) because I do not want to just be sent to pain management. I don't want permanent nerve damage from this and hope that I don't already. So pain management or referral to Neuro surgeon depending on the MRI results. I'll let you know when I have the MRIs done or when they are.
03-23-2014, 11:24 PM   #83
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Dads been in hospital for nearly 2 weeks now as he was very disorientated and agitated. Surgeon has decided to operate tomorrow.

I won't be here as l have to take my daughter to see the Endocrinoligist and the GI. I was going to change the appointments but an ultrasound for delayed periods showed no uterus...I'm obviously worried sick over this and need some answers.

How's your dad going lizbeth?
As if you didn't have enough to worry about!! I hope everything is ok with your daughter.

Jennifer it sounds like you could do with a break to give your body and mind a chance to rest, I'm sorry that life is so crazy. May I ask what kind of brain damage your grandpa has?

Update on my dad.....he is still in hospital, 10 weeks now, he had his brain surgery and recovered extremely well, we thought, he got moved back to his first hospital to the same ward he had been on, then got moved to a medical ward 2 nights later and then it all went downhill from there. Having had concerned calls from my sisters that he wasn't right I called the hospital on a number of occasions to express our concern and was totally dismissed by an Indian nurse (apologies here I don't intend to be ignorant and I most def an not racist), we had a definite language barrier right from the start, she made it very difficult to speak to her and when I did she laughed in my face at what I was telling her. I basically had to have a tantrum in the corridor for her to get me a Dr. 5 days after expressing our concerns dad was diagnosed with delirium caused by his brain injury and surgery, it took me to call his psychiatrist who arranged for his colleague to see dad asap who made the diagnosis.

These last few weeks have been hell, dad believes that a "Mr Stewart" is trying to kill him and is petrified, especially at night, he thinks he's trying to shoot him or take lumps off his face with a cut throat razor. He thinks the staff are all out to hurt him so doesn't tell them much so they keep telling me he's settled, I no longer call the hospital cos it's not true. I arrived one night, having been told he's settled, to find him trying to hide from the men that were throwing stones at him and he was trying to push the stones off his bed . He was absolutely convinced. There have been so many things like that, it's awful seeing him so scared. We have been told we may need to consider that it might not be a temporary state. He's too be moved to a rehab unit for further assessment.

I'm exhausted, driving up and down, no routine, no way of cooking properly and I'm living on my safe foods which are carbs so I'm piling on the pounds cos of the carbs and extra insulin. I'm staying in my dad's flat cos I can't afford to stay in the guest room and it's costing me a fortune driving so much. And I didn't intend for this to be a big rant but it seems to have turned out that way so I'm really sorry.

To finish on something good, as you will know from earlier posts my dad is not a very nice man and in normal life finds pleasure in being cruel and hurtful to people, especially me, but weirdly since the brain injury his personality has changed and he's lovely. We've actually been able to have lots of nice visiting with him. Apparently the area of the brain that was injured does not relate to personality?? Strange

Thanks for reading and being here. I haven't been on in ages so you all got months worth of stuff.
03-24-2014, 12:40 AM   #84
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That's a lot to go through with your dad lizbeth. I'm so sorry. We all need rest and so do you so do your best to take care of yourself too.

I don't know what kind of brain damage he has exactly. He had a massive stroke back in 2010 and it took them almost 4 hours to give him the medication to clear the blood clot. Dunno why it took so long but it was a 50/50 chance that it would either help or kill him. Either way he hasn't been the same since. Sometimes he acts like a bratty child not getting his way. Other times he seems somewhat normal yet he talks about women in a dirty way now and he would have never done that before. He also get angry easily and has hurt others and himself over minor things and deals with depression as well. Some days are worse than others with all these changes.
03-26-2014, 11:01 PM   #85
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That's a lot to go through with your dad lizbeth. I'm so sorry. We all need rest and so do you so do your best to take care of yourself too.

I don't know what kind of brain damage he has exactly. He had a massive stroke back in 2010 and it took them almost 4 hours to give him the medication to clear the blood clot. Dunno why it took so long but it was a 50/50 chance that it would either help or kill him. Either way he hasn't been the same since. Sometimes he acts like a bratty child not getting his way. Other times he seems somewhat normal yet he talks about women in a dirty way now and he would have never done that before. He also get angry easily and has hurt others and himself over minor things and deals with depression as well. Some days are worse than others with all these changes.
You've practically described my dad before the brain injury occurred! He has lost home help services because of his inappropriate comments and has been known to get himself intentionally hurt, especially if someone else is getting attention eg, when I found out I needed surgery very strangely ten mins later dad rang to say he was on his way to hospital cos he had "dropped" a shelf on his leg and needed stitches, he was always doing things like that.

He's taken another bad turn and yet again is taken too many days for hospital staff to acknowledge our concerns, and he has an infection brewing? I think.

I'm so exhausted and tired of having to be away from home. My sisters
are complaining about the disruption but at least they get to go home and sleep in their own beds and cook proper food, I'm the one who has to sleep in a stinky flat and make do with salads or microwave food,, not the best for a crohns tum . I'm sorry for the moan, it just got the better of me.......

How is everyone else doing?

Last edited by lizbeth; 03-27-2014 at 02:47 PM.
03-27-2014, 05:27 AM   #86
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lizbeth l'm so sorry your going through so much. I know how exhausting it is but try to take care of yourself.

My dads been in hospital for 5 weeks. He had his gallbladder removed and there were a lot of complications. When they went to operate they found the gallbladder had gangrene and it erupted. So they had to cut him open to clean everything and in the process they cut the bile duct so he just had another op to repair the duct.. And now on top of everything hes got pneumonia. Its never ending.
05-22-2014, 07:02 PM   #87
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lizbeth l'm so sorry your going through so much. I know how exhausting it is but try to take care of yourself.

My dads been in hospital for 5 weeks. He had his gallbladder removed and there were a lot of complications. When they went to operate they found the gallbladder had gangrene and it erupted. So they had to cut him open to clean everything and in the process they cut the bile duct so he just had another op to repair the duct.. And now on top of everything hes got pneumonia. Its never ending.
It's been a while since I've been here, how are things with you?

My update. Sadly I am no longer a caregiver, my dad passed away 2 weeks ago on May 8th exactly 5 years and 1 hour after my mum. Even up to the day before the drs couldn't explain why he was in the condition he was but we knew it was because he had given up and couldn't take anymore of this life without mum. He slipped away with us by his bed and me standing stroking his hair telling him I loved him. He had made his peace with me a few months back and from then I had my loving father back who smiled at things and appreciated me again, for that I am truly thankful. The last few years of hateful behaviour was wiped clean and doesn't matter any more and I loved him very much, if I'm honest more than I realised but I believe he knew I loved him. I take a bit of comfort that he is back with mum where he always wanted to be.
05-22-2014, 08:20 PM   #88
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lizbeth l am so sorry to hear about your dad. ..Know that you are in my thoughts and prayers.

Dads still in hospital. He got an infection where the GB cavity was and they just can't get rid of the infection.
05-22-2014, 08:33 PM   #89
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Thank you, please know that means a lot.

I really do hope the hospital can get your dad sorted out, take care.
06-25-2014, 09:53 AM   #90
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I'm new here been trying to find something like this for awhile and finally came across. Hoping to get some good opinions from people who understand what i'm dealing with.

My spouse had a colonoscopy beginning of march and everything went down hill from there. He was diagnosed with severe UC spent 15 days in the hospital. Went from 165lbs to 113lbs. Since march he has had 5 Remicade infusions and goes monthly now. He's also on prednisone daily along with an anti heartburn medicine. He also goes for blood and iron infusions regularly. In April he relied on me for everything including getting out of bed and showering. May was a great month seemed he was in remission and things were looking up. We have 4 young children and I'm currently a stay home mom, thank god.June hit and everything went downhill again. I try so hard to be understanding. One day I can wait on him hand and foot and be okay and others I'm sick of taking care of a 5th child who doesn't want to take care of himself. He does nothing but sit in bed and sleep, doesn't maintain his hygiene or help with the kids or house maintenance. He won't even make a list of meals he can or wants to eat so I can go shopping for them.I get "I don't know". Dr has been pushing since day one for him to go for surgery but he doesn't want to be stuck with an ostomey bag the rest his life. As far as I'm concerned that seems like a better life then what we currently have. I'm no longer his spouse I'm now a caregiver. There's no physical touching I'm lucky if he holds my hand. I was diagnosed with severe depression in 2013 apparently was around long before i had realized it. So trying to stay sane and take care of myself when i\m use to putting everyone else before me is quite difficult

I feel horrible for not always being compassionate and understanding but I'm so frustrated. Any thoughts, suggestions, opinions are welcome.
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