harder emotionally than physically

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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 12/28/2007 6:45 PM (GMT -7)   
I am going through a strange phase and am wondering if any of you have experienced this... my UC symptoms are calming down, finally, after being diagnosed 10 months ago. I am not in remission quite yet but am definitely headed in that direction, and I can say with 100% sincerity that my UC is not controlling my life or limiting what I can do. And yet, lately I am struggling, emotionally, with fact that I have this disease. I am very angry and feeling like it is totally unfair, and feeling sorry for myself. I feel like it is stupid to feel this way since things are good, so I am wondering if you ever feel like this, like having to digest this disease emotionally/intellectually is harder than having it??? I haven't had it that long - less than a year -and I hear that it takes a very long time to accept a diagnosis, so maybe that's why I am upset, but just wanted to throw it out there and hear your thoughts. thanks.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent)
Various vitamins, a probiotic and fish oil.


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4812
   Posted 12/28/2007 7:18 PM (GMT -7)   
The CCFA has local support groups http://www.ccfa.org/chapters/?LMI=7 .... It might be nice to meet up face to face with others who have IBDs too. They have really great people at these groups, they might be able to really help you.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/28/2007 7:48 PM (GMT -7)   
I go through that every once in a while. It just seems unfair and like nobody close to you understands and what will the future hold, etc... but if you are feeling good, try to enjoy it! I appreciate any day that I can function normally and cherish it! Keep that in mind!
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade,ulcer shrunk in 3 months August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis? & Fibromyalgia Current meds: Remicade 700mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Back to Prednisone again :( for joint pain


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/28/2007 8:43 PM (GMT -7)   
I spent the whole first year in denial, waiting for the thing to just go away so I could be me again. The second year I spent experimenting with alternative "natural" medications along with those from the doctor. I had accepted that I had the disease, but not yet that I would always have it. Since I didn't respond well to the established treatments, by the third year I was so sick I just went to work then came home and rested so I could go to work the next day. Due to my physical status and the depression that went along with it, I wasn't able to think about much of anything.

In year four, Entocort lessened my symptoms somewhat and my primary care doctor put me on anti-depressants after I had a full-out crying meltdown in her office. That was when I began to really be able to think about having the disease for the rest of my life or having surgery, and to really deal with my altered self-image.

What I finally found is that I'm now back to being me, but it's a different me than I was before my UC appeared. And that's okay. I've done my grieving for the old me, and now I'm only looking forward.

I think for some of us, it's like grieving the death of someone near and dear to us, and it just takes some time and sometimes some medical or therapeutic help. But eventually I think most of us do get through it and learn to appreciate what we have now.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine and Remicade.
In remission since April, 2006. Remicade has been my wonder drug.
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 12/28/2007 9:50 PM (GMT -7)   
Hi Judilyn - thanks for the thoughtful post. I really appreciate your perspective. I am glad to hear that remicade has worked well for you.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent)
Various vitamins, a probiotic and fish oil.


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 12/28/2007 9:51 PM (GMT -7)   
It certainly seems like this takes its toll in different ways for different people. I appreciate the honesty and sharing of feelings and information. I am not totally sure how he has accepted this. I have watched and observed first hand the many different ways this has affected his mood, personality and overall sense of being. Like yourself UCinNC he is physically kind of where you are at for which we are both grateful. I do know he is a much happier human being right now being able to function more normally now. He has some days that are not so great but in comparison they are tolerable.

I know it has me a bit of a nervous wreck trying to be in tuned with his symptoms and watching over him and constantly hoping things are ok. I hope a full remission is on the horizon for him and he is fortunate enough to enjoy it for awhile too. When I read some of the posts here I feel so bad because that was him in March, Apr and May when he was flaring so badly and I suffered with him and know what others are dealing with currently.

Honestly, just try and enjoy your well being, get on with life and try not to let it get you depressed. Easier said than done I know but don't let those thoughts overtake your good days. Many of us here who are lucky to be able to do things now have so many others who would trade places with us in a heartbeat. So it's important for us to be grateful we have this reprieve and enjoy life the best we can and keep praying there will be a medical breakthrough in the near future to help us all.

I hope I don't sound preachy - in the whole scheme of things I just feel there is a lot to be grateful for and try to focus on the positive even when things may not seem to be all that great. I have found that a positive attitude really helps so much in coping with things. (Believe me I have had many moments in my life where that wasn't the case but as I matured you really do realize more and more what is truly important and it helps keep things in better perspective.)

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 12/28/2007 11:54 PM (GMT -7)   
Sounds normal to me....it's difficult to focus on the good days functioning "normaly" and feeling well when knowing the eventual outcome of the first symptoms of an impending flare.

It's almost like a guilt complex...like we don't have a right to feel good when others are suffering.  Let me assure you that misery doesn't always like/need company.  
On the other hand...it could be that NOW you have the time to think about your other emotions/feelings....again, I think it's normal to at least acknowledge them.  It'll get tiring eventually if you have no pay-off.  If it takes over, it's definitely good to see your doctor and discuss them. 

Having a good doctor, doing the research and understanding what it's all about is definitely helpful. It's good have a support system of family and friends whom you don't have to convince you have UC.

No time is a good time to have UC, and you have a right to be angry, pissed-off, frustated, depressed...whatever and whenever. Allow yourself those times but do have good options available for when you need them.

I agree that it's a grieving process. I don't think it's only about UC, however...it's about our lives changing from what we imagined and from what we were. The same can be said about growing older, for life is really very short from my new perspective of being 53...with UC and PSC and whatever else may happen as I age. I have a handle on the UC and the PSC for now. I don't have a handle on totally organising things in my life that would make it much less complicated. But....I'm working on it. Must have something that's always disappointing, don't I...because that's what I do.
Definitely time to continue the changes because my life certainly isn't over yet.

Allow yourself time to heal, do things that make you happy. Live in the moment...etc. The UC will always be "there", but it can be managed. If that doesn't work over the long-run..your colon can be removed, and life goes on...just differently. It's by choice how we deal. Some deal better than others, some take longer than others. WE are able to learn once we recognise what isn't working. We can always change the plan with different options. There is always hope that tomorrow will be better.

Hang tough....you definitely have what it takes.

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 12/29/2007 12:04:15 AM (GMT-7)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/28/2007 11:54 PM (GMT -7)   
When living with a chronic illness this is very normal...I've even suffered great depression along with anxiety because of having this retarded disease for 16 yrs straight with no full remission...infact I'm amazed I havn't fallen off the deep end and stayed there, then again I find posting at this board to be great therapy, nothing better than trying to help others cope with the same thing you're going through...volunteering is good therapy as well, anything to do with helping those less fortunate in any way can bring alot of perspective to ones life, especially one having a difficult time with their life.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 12/29/2007 7:10 AM (GMT -7)   
My view on this is that UC is a physical disease and for me it will remain a physical disease. The minute it starts to get at me emotional then I'm going down a path I do not want to go down. Anger, resentment, distress are I guess very natural things to feel. In a way I want to feel those. But they are a choice. You choose to feel each one of these things. Your mind makes a decision based on the info you give it and the net result is a feeling. You feel the way you think.

I see 2 ways around this:

Accept these feelings and learn to deal with them and channel the anger and emotional strain to be a positive thing. I'm sure theres heaps of awesome support groups etc that will help you deal with this issue. Lots of people on here seem to have taken this path. I cannot do this.

You can also fight all this. Fight the negativity. Fight the bad feelings. Don't accept them. Challenge your mind. Challenge you thoughts. Challenge the labels that you are chronically ill. Fight the feelings in the morning, in the evening, in the night. Don't live in the land of what ifs or what might be. Live in the "now". Think in the now. Control your thoughts. Answer back to the negativity. answer back to the fear. Challenge every negative thought with the positive things that exist in your life.

It's not hip these days to take this second course of action. It's prob not the way that the Sitcom Doctors of TV would have you deal with issues. It doesnt sell their books I guess. Denial has become a catch-phrase for the luxury culture of us in the West that seeks solutions in bottles.

Above all else you need to find the solution thats right for you. Take everyones advice with caution but experiment with it for yourself. Only do what makes you feel better. Advice is just a form of nostalgia. No-one on here has the answer for you. We can help. But you have the power to etch out a solution. It may take awhile. But you will get there.

If you feel angry its becasue you think angry thoughts. If you feel depressed its cos u think depressed thoughts. If you don't change something that is causing you distress it wil continue to cause you distress.

From the little I know of you, UCinNC, I would have an absolute belief that in the long run you will figure this out for yourself.


800 mg Asacol + 250mg suppositories daily...
 
...but more importantly a Healthy Diet, low levels of Stress and a steadfast belief that "I am a healthy person".
 
 
 
 
 
 
 


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 12/29/2007 9:16 AM (GMT -7)   
deffinatley emotional. I worry about being 70 years old and sick...My brother had a good point..Look at animals..when they get hurt they dont focus on being sad and bummed out about what they cant do, they focus on how to do what they can do with their dissability. Im going to try to look at things more like that..I think being emotionally healthy helps to be physically healthy. Easy to say when Im not laying in a hospital bed huh? But seriously, i am going to try...
Lori
38/F
UC diagnosed 1991
Asacal, zoloft,levoxyl


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/29/2007 12:35 PM (GMT -7)   
Focusing on the emotional effects now that you've got the physical effects somewhat under control makes perfect sense to me. Also, since you're in the (relatively) early stages of your diagnosis, you will go through stages similar to the grieving process where you're angry, depressed or in denial. These things are normal. Getting some counseling with a therapist who works with chronically or terminall ill patients might be very helpful. There are also several good books out there on coping with chronic illness:
 
 
Looking on the positive side, I feel having this illness has done some good things for me. First of all, it forced me to clean up my act. I was a confirmed sugar and junk food junkie. I cringe now when I think of how I used to eat. I eat a clean, healthy diet now. I started working out regularly, lifting weights to combat the bone loss of being on prednisone and am now in much better shape and look more attractive than I did twenty years ago when I should have been in my prime.
 
Secondly, the first couple of years of misery really showed me how strong I could be. Even though there were times I was in so much pain I wanted to die, I kept pushing through. I read everything I could get my hands on about UC and general digestive health. I was unwilling to accept my first GI's statement that I would never be well, would be on medication the rest of my life until I had my colon cut out. I educated myself and was able to make positive changes that helped bring about a state of health that, according to them, I would never have obtained.
 
Struggling through this has helped me be more understanding an empathetic when others are suffering. I feel better equipped to be supportive and helpful. Particularly when other are experiencing digestive problems, I'm often able to give advice or point them toward a source of information. I'm a moderator on a weight training forum where I'm known as the "digestive queen" because of the advice I've been able to give folks who have food sensitivities and such. It's nice to be able to give something back.
 
Also, although it sounds cliche, there are alot of folks out there who are suffering with physical maladies worse than what we have. When I go through a stage of "poor me," I think of these people, particularly kids that are struck down at very young ages with cancer and other things and that quickly makes me realize how lucky I am.
 
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


redplum
Regular Member


Date Joined Sep 2007
Total Posts : 49
   Posted 12/29/2007 12:52 PM (GMT -7)   
Hi UCinNC,

Sorry to hear that you are feeling sad about your illness and that you even have to deal with this illness. It takes time to come to terms with a the diagnosis of a lifelong illness. I have had UC for 20 years and I still get the blues on and off. It alters your life extremely, and even if the meds work then there are usually side effects. However, at some point you have to accept what you have and go on with life. I guess it is not as bad at getting cancer or some other life threatening disease. Having a positive attitude helps quite a bit and being thankful for the good things in your life. Exercise also helps maintain a positive emotional state and reduce depression.

This a great place to chat with people who share a similar experience as yours. I also really appreciate everyone's honesty about their feelings. I just had a colonoscopy and found that my entire large intestine except the rectum and sigmoid is still moderately flared up. I used aloe vera for 6 months to see if it would make a difference, however, there was no improvement from last year. I let myself be sad for a couple of days, and thought to myself at least the doctor did not find any dysplasia or cancer. Concentrating on the positive helps.

Don't feel bad for having the blues since your diagnosis is very recent, but as time go by I am sure that you will learn to live with your illness and accept it. Also, find time to take better care of yourself--eat healthy and get a lot of rest.

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 12/29/2007 12:58 PM (GMT -7)   
Thank you to all of you for the responses. I appreciate the support and encouragement. My fiance has been out of the country in Ireland for a week and he returned last night and already I feel a little better. so silly, but so true. just having him around helps. also, because he is a scientist in the medical world (not a clinician, but a researcher on arthritis), he sat down with me today and developed a very simple system for me to use to track my symptoms so I can see if food has an impact on me. I think just having him take the time to strategize with me like that really cheered me up. and hearing from all of you also really helped, so many thanks. I guess we have our good days and our bad days and as long as the good outweigh the bad, I should try to keep my chin up and a positive perspective. Thanks again. Maybe I will go running today to get the endorphins flowing.... :)
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent)
Various vitamins, a probiotic and fish oil.


quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 12/29/2007 1:09 PM (GMT -7)   
Glad you're having a better day and that you have a great support in your boyfriend. His perspective will be helpful.

Try to take it a day at a time. What you learn in a day, even passively, can be tools for functioning better your whole life, whatever situation you may encounter.

Keep us posted as to how you're doing.

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 12/29/2007 2:46 PM (GMT -7)   
That's us Irish people to a tee...logical astute, scientific and darn efficient...ahem.....if you only knew the real story!!!

Good luck with the system!

D
800 mg Asacol + 250mg suppositories daily...
 
...but more importantly a Healthy Diet, low levels of Stress and a steadfast belief that "I am a healthy person".
 
 
 
 
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/29/2007 3:29 PM (GMT -7)   
I thought the Irish were just lucky LOL you know, the luck of the Irish!!

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 12/29/2007 3:31 PM (GMT -7)   
Nah thousands of years of careful planning...and leprechauns...lets not forget the darn leprechauns
800 mg Asacol + 250mg suppositories daily...
 
...but more importantly a Healthy Diet, low levels of Stress and a steadfast belief that "I am a healthy person".
 
 
 
 
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/29/2007 5:01 PM (GMT -7)   
Ya the leprechausn....weird little buggers!

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 12/29/2007 5:22 PM (GMT -7)   
What fantastic posts....who needs therapists when we have all these wonderful words of wisdom and different perspectives.  Thank you all.  I especially like "living in the moment" how true. I will definitely use that with hubby to reinforce when it is needed.  
 
And UCinNC -- happy to see your post tonight.  It's normal and natural to get ticked off and a bit down but so good when it passes and good thoughts kick in and take over.  Way to go.
 
It's funny how I never knew about this place until 8-9 months ago and now can't live without checking in each day.  My husband is so grateful I found this place as it has really made a difference in the way we view this UC and has been so helpful to us.  Most of our conversations take place before we go to sleep and have quiet time to discuss alot of what I read on here.  It gets him asking a lot of questions and surprisingly I have the answer more often than not.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 12/30/2007 1:30 AM (GMT -7)   
Pretty cool....yes, it's addicting ish't it? in a good way!!

q
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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