New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 5/4/2010 7:05 PM (GMT -7)   
Hi guys,
 
I have posted some replies yesterday, but have not been on the forum for a couple of days. Not because I am feeling well, but quite the opposite.  I know of a new member who has just joined and dont want to scare her - she is was also dx in april and is on the same med regime as me and looking to commence  a regime that my GI wants to do as well.  I am trying so hard to keep positive and want to do so for those who have just entered the world of crohns too.
But to be honest with you all, I have done nothing but cry and scream with frustration for two days - so I thought it best to not burden.  I am usually so happy and love to laugh and I know that this is going to take some time to get used to, but the lonliness that comes with this is incredible.  I know some of you have posted that you are concerned that I am swinging a bit in mood - please know that I am very happy to be on the forum and to read posts that are uplifting and take note of those who are concerned about noticing change.  It shows that you all seem to ge genuinley concerned.  I appreciate this very much.  I just wanted to let you know that I am struggling with some things at the moment and that I appreciate each and every one of you that replies.  Getting there with your help!  Thankyou so much.
 
Charlee
37y/o female from Australia
Dx: crohns april 2010
Meds: Currently : prednisone, calcium, vit d, nexium, probiotics, fish oil


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/4/2010 7:18 PM (GMT -7)   
A huge hug to you.

Do you think you could tell us more about what is upsetting you most, Charlee? Is it pain? Is it diarrhoea? Is it nervousness about starting Imuran?

You mentioned loneliness: is this because diarrhoea is confining you to your house? Or are you feeling different from other people, and finding it harder to relate to them?

Please do tell us more...

We care.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 5/4/2010 8:32 PM (GMT -7)   
Ivy,
Not too much pain, just a bit crampy - not the problem. Diarrhoea is under control somewhat, present but not overt at present. Just feeling isolated I guess. Finances a huge worry. GI doesnt want me to return to work for at least a couple of weeks - then theres the imuran and what that may present health wise. Confined to the house because I am struggling with the sweating so much. GP says no signs of infections. You know how cool its getting now. Well I do nothing but sweat. Changing clothes regularly. Skin on hands starting to break down badly. Splits on skin developing into multiple lacerations - I suspect from the salt in the sweat. Some uncofortable bloating present - just making me feel yuk! Isolated because the rest of the world around me is "getting on with life" - feel like mine has stopped. Some other social issues going on which I wont go into - just feel like everything is on top of me. Trying hard though. Its just when something as easy as general housework is done at a snails pace is difficult. Getting behind in the most basic of tasks. Dropped 4 glasses out of the cupboard yesterday just trying to get a drink - virtually slipped out of my hands.
Just venting Ivy, I'll get over it.

Charlee
37y/o female from Australia
Dx: crohns april 2010
Meds: Currently : prednisone, calcium, vit d, nexium, probiotics, fish oil


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 5/4/2010 11:11 PM (GMT -7)   
I was worried I'd overstated my concern and you stayed away because of it. See how great a mind reader I am? I'm glad to hear thats not the case. But I' still worried about you. I'm glad your putting your feelings out for us to maybe help! That takes courage. What's with the sweating I thought the buscopan stopped it? I started it yesterday afternoon and had my first sweat free night in years! Was sweating today after a coffee and a meal, trying to go on 2 doses a day instead of 3. Took the 3rd dose and am so far sweat free again. Well not totally, just a little going on not like the usual lots. Tomorrow I'm looking forward to after a shower and not needing another 20 minutes later cause I can't dry off.


Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 5/4/2010 11:14 PM (GMT -7)   
Charlee I just noticed your signature states your on prednisone. Is it possible it's the cause of your being depressed that's how it went for me after about 6 months on it?
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 5/5/2010 12:01 AM (GMT -7)   
I agree with Grandpato2 about the prednisone being a huge part of how you are feeling. Whenever i am on prednisone I am a completely different person due to the mood swings, moon face, lack of sleep, racing heart, sweats, and the shaking hands. Prednisone and I have a love hate relationship. Things will begin to feel a little more normal as time passes with this disease and you learn your abilities and limitations. Right now every thing is so new and you are probably still having a hard time wrapping your mind around thought of Crohn's disease and lifelong illness. You probably want to learn everything that you can just to answer the questions that you family and friends have. I am sure that you are probably a little bit in denial at times and wish that you could just close your eyes and go back to the time before the first symptoms arose. All of these things are completely normal and ok to have. These are emotions that everyone of us here have gone through or are going through at some time and you too will overcome them.
I noticed that you said that you did not come around because you were crying and screaming due to the frustrations of the disease and the financial stress that comes with it. In the future, this is precisely the time that you need this website the most because you need to be able to vent to people that know from experience exactly what you are going through. YOU ARE NOT ALONE IN THIS. Those are words that you need to understand and never ever forget. No matter the problems, the pain, the illness, the anger, the happiness, and the laughter we are here and will always be grateful to hear you speak.(well write, but you get my point.) When times are the hardest come on here and read some posts to see if there are answers for you or just another one of sniper's posts to make you laugh. Come on here and instead of running away and segregating yourself from others, approach the issue head on and slay the giant. I truly believe that we are not given trials that we can not overcome and we are the only ones holding ourselves back from seeing our inner strengths. I am sure that you have seen the Disney film Lion king, and you may be familiar with the phrase" Hakuna matata" which means no worries for the rest of your days. (You all will have that song in your heads all day now) Everytime things start to get hard for me I just think those 2 words and realize that nothing is worth hurting over or worrying over enough to make me sicker and that I need to use all the resource that are at my dispense to keeping going stronger. You will be ok and you ARE going to make it and live a great life if you stay positive. Attitude is 10% of what happens to us and 90% of how we react to it.

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 5/5/2010 1:09 AM (GMT -7)   
Charlee,
So sorry to hear that you are struggling right now. Those inital few weeks after diagnosis are like a roller coaster ride of emotions.
Relief that you have a diagnosis, fear of the disease, relief that you are on drugs that are going to 'control' it, fear when they don't and you have to move onto something else. It's a really quite bizzare time.
Any drugs taken can intefere with your emotions (some more than others) and I think it is important to let your medical team know if things are closing in on you.
Acceptance is such a large part of having any illness once you can do that you can deal with it head on
Wish you well

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/5/2010 1:21 AM (GMT -7)   
OK. As far as the sweating goes, you might find that it's because of the pred. I always seem to perspire a *lot* more when I am on steroids. That said, it does sound like you are having an unusually hard time of it.

Have you tried putting barrier cream on your hands? It's a long shot, but it might help. Also, you can get some stuff with a name something like "liquid band aids" that you can put on your cuts and help with the stinging and healing. You might find that beneficial.

Bloating: fennel seed tea or dill seed tea may help, as may an over the counter med called "De-Gas". As always, please check with your doc before trying OTC remedies, as any OTC things have the potential to interact with your meds and make you sicker... but my feeling is that these should be pretty safe for you.

To be honest, Charlee, I'm thinking that you may benefit from having someone to talk to face-to-face as you adjust to your symptoms and diagnosis. This might be a good thing to discuss with your gp. In some (most? all?) states you may have access to a certain number of free counselling sessions. I really do think it might be helpful for you to really discuss your feelings in-depth with a professional person, just to get them out of your system. What you are feeling is completely normal, and most (I'm guessing all) of us have gone through similar emotions after diagnosis, but that doesn't make it much easier for *you*, and I really do think that you need someone in your real life to let you know that you *are* ok and that it is all right, normal and proper for you to be thinking and feeling what you are.

Please talk to your gp if you possibly can - best to deal with these feelings as soon as they arise, instead of allowing them to fester.

Housework - don't be surprised if you find that you need to develop a new strategy for doing housework now that you have these symptoms. Why not start a new "housework" thread and then we can swap ideas, techniques and strategies and (hopefully) help you think of some new & different ways of doing things?

Lastly, PLEASE don't be afraid to ask for help there. You can ask your doctor to sign you on for home help / meals on wheels / whatever from the Council: there might be a waiting list for you to get that help, but there's no shame in getting assistance if you're finding things hard there. This is what you pay your taxes and rates for, and you're entitled to a bit of help now that you're struggling.

Keep hanging in there. I agree with the others: your thoughts and emotions can be completely screwy while on steroids so always remember that your feelings, while always valid, may be a little skewed by meds. I hope and expect that things will seem easier once you get on a lower dose and more stable medically.

All the very best,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8586
   Posted 5/5/2010 5:11 AM (GMT -7)   
I probably won't be a recognisable 'face' to you, but one thing you said which stood out for me was the loneliness part. Loneliness is the worst; I hope it lifts for you soon.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/5/2010 8:48 AM (GMT -7)   
Charlie, ask your doc about anti-anxiety med. Mine put me on Lorazepam and it's made all the difference.....35 years with this disease and suddenly the whole situation started to get to me 4 years ago. Also, your med list has no actual "crohns" med on it. Whenever I was put on prednisone, it was as a stop gap while waiting for another drug to kick in but I don't see any other actual crohn medication on your list.

Can someone explain the probiotic thing to me? Why would you want to strengthen your immune system when an overactive immune system is the problem in the first place.

Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 5/5/2010 4:43 PM (GMT -7)   
Hi guys

First of all, thankyou so much for jumping in and getting back to me so quickly. I guess I retracted for a couple of days just to "kick the cat " (so to speak), have a cry and scream. Just venting and releasing some emotions. Trying to stay cool, calm collected for most of the time to allay fears or worries for those around me. I have always been independant and a bit of a rock, and now seem to be trying to land a plane with no landing gear engaging!. As far as the pred, I know it can give you mood swings and can usually recognise those, and in doing so makes it easier to control them, because I know it will pass. I think over the last couple of days its more the adjustment of life from here on in. Promise not to shy away again, just didnt think I'd be of much use to anyone on the forum whilst having a little freak out! Grandpato2 - I dont think you overestimated at all. It could be that some level of depression / anxiety is beginning to set in, but please be assured that I am trying to recognise it and fight it with positives. I am also very pleased for you that the buscopan is giving you some relief. To be honest my stongest allie right now is this group. I have made an appointment with the GP today to see if it is necessary to be on a light anti-anxiety, just until the pred period is over. I know my GI is dead against this sort of treatment - he mentioned this when I was in his rooms. It was my mother who posed the question to him because I was sweating, shaking and unable to sleep. He said very firmly no because they are too addictive. I will ask the GP for some help. God knows I am not looking to be addicted to anything - just need some help with the sweating as the buscopan doesnt help me and just want to feel a little calmer for a while unitl I adjust. As for the finances, housework etc, I'm sure things will settle. Am making some calls today for some extensions on everyday bills and just doing what I can do around the house to keep things basically ok. The washing is a big one because I am changing clothes every hour thanks to the sweat! Anyway onward and forward. A BIG THANKYOU TO YOU ALL

Hoping everyone is holding their own OK.

Charlee
37y/o female from Australia
Dx: crohns april 2010
Meds: Currently : prednisone, calcium, vit d, nexium, probiotics, fish oil


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 5/6/2010 12:11 AM (GMT -7)   
Charlee don't give up on the buscopan too quickly talk to the Dr. about different doses. Adult dose may be increased if required up to to 20mg 4 times daily (max 80mg/day). Even if you stay with 10mg/3 timesa day. Try not using it during the day and 10 mg at night just might stop the night sweats. If Dr. allows a higher dose and it dosen't work try different ways to see if you get relief at night. I've had 2 nights ok so far but days aren't as good mostly because I add heat, ie. coffee showers and hot meals. The spontaneous no reason for it sweats seem to be gone. We need sometimes to think outside the box to see how meds affect us but always stay with your prescribed doses.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 11, 2016 1:18 AM (GMT -7)
There are a total of 2,736,238 posts in 301,363 threads.
View Active Threads


Who's Online
This forum has 151453 registered members. Please welcome our newest member, LvGuy1.
158 Guest(s), 4 Registered Member(s) are currently online.  Details
bluelyme, Girlie, Nomar Lupron 4 Me, celebrate life


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer