Overreacting a lot....

New Topic Post Reply Printable Version
62 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/5/2011 5:58 PM (GMT -6)   
I feel really touchy, kind of off emotionally. Wondering if it's hormonal or just the phase I'm at in the healing process or what. My healing is going slower than I expected, I'm at almost six weeks post surgery, still having a nurse every day to pack my wound, some pain, lots of sluggishness.

I keep getting really upset about little things and not knowing why..... then I feel guilty, even though the folks around me are being patient w/me.

Can't decide how much I want to be in the world and how much I want to rest .... and maybe just feel sorry for myself... I'm starting to be in touch w/people at work, and in one way I miss them, but in another way it feels overwhelming to talk to "normal" people about "normal" things....(not that any of us are really all that normal or abnormal.....)

Been sick for ten years (starting pre diagnosis), very sick for two, and extremely sick for one. I just have this lost feeling sometimes.... not well enough to really start up doing things, but not sick like I used to be, not sure how to relate to my regular life.

Not a big crying type, but feel like I'm on that edge a lot.....

Also haven't had a period in two months and think it's possibly PMS....or maybe some menopausal thing....

I keep a blog for family and friends, and it's really helpful, but I get two or three times as many messages on days when I'm doing well than when I'm down.... people just don't know what to say.

In some ways this was easier emotionally when it was more of a crisis....

Can you relate to any of this? Happy to hear about it..... no need to try to fix anything, I will muddle through....

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/5/2011 7:48 PM (GMT -6)   
I'm so sorry to hear this blueglass :-( I feel for you cause anything physical for this long or any length of time really messes with you emotionally! It's amazing what we learn how to cope with I will definitely pray for you to heal quickly and have peace while you do!!




Dee
Prov3:5,6

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/5/2011 7:51 PM (GMT -6)   
Bluegrass,
Welcome to my world! I've been in this since July 17, 2006 when I almost lost my life due to the surgery that on review did not need to be done. The 13 month chase to get my life saved result of life-threatening damages from that surgery was hard but I was determined and I did it. THen my quest to see the world and my ton of cruises and still 2 more to do. I never could go back to work. I am, as you know in litigation with original defendants for the unneeded surgery that started all this. Put together my own suit took me 2 years of study of anatomy and surgical text books from medical schools. Then another year to find an atty who understood all the anatomy. Things on a roll there. Then battling all the fall out-politics like loss of ins., nobody likes a patient in litigation even if it is justified. my friends are the best and I would not still be here if not for them. But feeling apart from the rest of humanity (I mean who the h--- else falls into a wrong dx, wrong done surgery, then is left to die and it's left to them to battle the medical world to get save the best that can be done?) Nobody! I did not even have a disease, I mean, NOBODY falls into what I did. I always got good grades in school and had very good professional jobs. It's not like I'm an idiot or anything. But, I sure fell into the worst there is to offer here on earth. Know that you are not alone. I am sitting right there on your shoulder saying "me too." Try to rest. I love sleeping. 12 hours a night does me right. Tomorrow is a new day to pick out positive things. even a pretty sunrise you can get lost in is worth it. remember we have our sense of sight that some do not. I find looking to nature calms me. Sunrises, sunsets, looking into my cat's eyes, listening to her purr. If I had a do-over I would go into an occupation where I was surrounded by nature all the time. I think at times nature is our saving grace. Rosemary

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 4/5/2011 7:53 PM (GMT -6)   
I can't say I had a period exactly like yours, but I agree that it is a hard transition to suddenly feeling well again. You're so used to feeling sick and that way of life that it's almost like you're looking for something to be wrong and it's just hard to adjust. Not to mention that on the other hand, you also feel like everything was supposed to be great after surgery, and there are still going to be little bumps in the road. I've had obstructions, extra surgeries, skin issues, etc...nothing is perfect. You will still have some struggles, but life will OVERALL be better and yhou have to focus on that.

I know for me the big transition is not having time for myself now...I used to have to get up 3 hours before I left the house to have a diarrhea party EVERY morning. Because of that I always had (however awful) "me" time for a minimum of 3 hours every day. Now there are days when I have about 15 minutes! But I have to remind myself that it's just a matter of adjusting and getting used to it; and it really is for the better.

It may seem like a really frustrating recovery, but you have to think about it as 6 weeks or 8 weeks or however long it takes, for the next 40+ YEARS of your life. I understand that friends and family don't know how to react to this; it's too much for some people to deal with. It's made me sad and lonely in some respects to know that people don't understand, but at the same time I have become stronger; realizing that I have my STRONG self to count on. If I can get through this, just about anything else is silly to worry over.

This was kind of rambly and long but I hope this makes sense. All I can say is I know how it is to feel overwhelmed and feel like you don't know your body anymore. You'll get to know it. Just be patient.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/5/2011 8:23 PM (GMT -6)   
Probably what's happened is, you are feeling better, and you feel like you want to be doing stuff, and should be, but don't physically feel well enough to do it.
I remember being like that and being really antsy, cause i wanted to do stuff, but i knew once i started i would be worn out and not want to do it anymore!
And it's really hard to be at home, esp when you are used to being at work. i am still at home, not from surgery, because i am a stay at home mom, and its soooooo boring and lonely! (which is why i am here all the time, lol) and it's really hard to not be around people, even though, i don't really like people all that much :D anyway i rambled
But yeah i understand what you are feeling, and i think that its one of those things you just kind of have to get through,doesnt really have an answer, maybe let out a good cry, always makes me feel better.
hope you feel better!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/6/2011 4:51 AM (GMT -6)   
blueglass, you describe exactly how i felt after my surgeries. i was sooo emotional, was just crying a lot. it's normal and understandable. it's exactly the way you said, like after being sick for so many yrs (it was 16 yrs for me), you don't remember how to lead a normal life. before my surgeries i used to spend about 6 hrs in the b/r every morning, then off to work, feeling bad and in pain all day. that's how my day was - either in the bathroom or at work and all that time i'm in pain, not being able to eat etc. the surgeries changed it all (yeah, for the better), but it's like i don't know how to adjust to living normally.. it's strange, but it happens to many of us who've been so sick for so long.

you will gradually find your way through :)) cuz good things are easier to adjust to, that is a healthier you. don't overload your self with activities you don't feel ready for, but gradually do little stuff till you feel ready to do more. when you're ready you'll know it.

hopefully you'll keep improving and gradually able of letting go of the past, build your new life.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 4/6/2011 5:03 AM (GMT -6)   
Well, I still don't know what it is like to live a normal life b/c I am still going through many struggles, but I am ready to get there, to move on with my life.  So, I am sure it would be weird if I ever get better.  I am sooo used to not feeling well, trying to get through my day at work, and then come home to lie there with my heating pad on the couch.  Then, looking forward to the weekend, so I can plan to take a laxative, get cleaned out, and relax.  I know it is not good for you, but I do it every once in awhile-tanning-not just to be tan, but for sunlight, warmth, good to get my vitamin D!  smilewinkgrin   It makes me feel good.  Still praying for my day!
 
2009-Diagnosed with IBS after years of battling with constipation
2010-Confirmed colon inertia after transit study
2/3/11-Laprascopic left hemicolectomy to remove kink in colon
Now have stricture from surgery (having move complications than I should)
Still struggling with trapped gas and constipation
4/11/11-Finally have an appt. to see an actual colo-rectal surgeon

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/6/2011 6:02 AM (GMT -6)   
hi bluegrass, i felt just as you do on and off in the first weeks after surgery, there would be a good day or two then out of nowhere a cloud of despair & dark emotions, while not at all fun at the time, looking back i think it was a a natural thing after so many years of illness, restriction & not enjoynig the freedom & happiness which every one else seemed to take for granted, add to this a very major surgery, the drugs (anesthetics & pain killers). i believe that it is more than normal to be very messed-up in your head , physically & feelings wise for a time after. you mention that you were ill for 10 years, this is 520 weeks -ish; it is six weeks into your recovery which while living thru it seems a long time but you have 40 * 52 weeks left to live in good health when your healing kicks in properly - this sounds probably like i'm preaching here & i'm sorry but i'd like you to give your self the time to get better - you are getting the nursing attention you need & your body does know how to heal & it will in its own time - my wound nurse used say 'better in than out' refering to wound discharge & i think she was correct - better for the wound to heal slowly rather than quickly but wth problems remaining inside.

please do give yourself time - your family friends career & the world will still be there when you emenge well & rearing to go again

luckily i was in a position to give myself a year to sort myself out after 20 years of UC & to be honest i think i needed it - sure my career is now 2 years in abayance & in the IT world this is an eternity but hopefully when i look back in 10,20 years time I will view this 'off' year well spent

best wishes
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/6/2011 6:36 AM (GMT -6)   
I think most of us have felt that way at some point shakehead

Have you talked to your doctor about this? After a major surgery we experience all the feelings of loss and adjustment. I know many have used medication through this period of sadness...it's normal don't be so hard on yourself.

"normal' life does resume!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/6/2011 6:40 AM (GMT -6)   
Thanks so much everyone -- so nice to wake up to 7 replies.... nice to not be alone, but sorry it's been so hard for all of us.

I took this stress reduction class last fall, and it was really helpful in coping, although it didn't help my physical symptoms at all..... I'd kind of abandoned most of the practices w/the hospitalizations and surgery etc, but figured I'd try a guided body-oriented meditation this morning.... I'd done this particular one lots of times before when I was sick, and so would have all kinds of tightness and rumbling when I was focusing on my guts.

Well today, I pretty much just felt frozen, like I have armor on, pretty much everywhere, except for my feet. I did feel more relaxed afterward, but then I was thinking that a lot of what happens in the hospital would be considered assault in most other contexts -- cutting you with a scalpel, shoving a tube up you (had a flex sig in my first hospitalization of the year, no more of those!), sticking with needles, giving you gas to make you sleep, taking blood, etc, etc.... and I think the body pretty much registers these as assaults, even when the brain consents and understands that they are ultimately for the good. So, I might be feeling better in that my wound is less painful and I have more mobility, but I seem to be physically traumatized all over from the whole experience.

Another thing that's hard is that this surgery really didn't fix all my problems, but the crisis aspect of it masked a lot of things, and so it's disappointing to see myself overreacting or being petty or generally being annoying in a very human, everyday way.... and again, as people say, without yet being well enough to get all the benefits of feeling healthy.

I see my surgeon today, so will see where she thinks I'm at.

I know about those morning "parties" in the bathroom..... can't say I miss them as of yet....

Slightly OT, does anyone know why my signature prints sometimes and not others? I just made it a few days ago. I don't see a pattern as of yet....

Be well everyone.... thanks again.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/6/2011 7:01 AM (GMT -6)   
bluegrass, you took the words right out of my mouth when you mention the word 'assault' - i was thinking the very same last night. at a rational level we can be ready for the interference with our bodies at a high mental level but in our design over the millenia we are not at all designed to be opened up, rearranged & put back together, as you say our developed minds & also maybe emotions can prepare for the medical onslaught but i have come to the conculsion that our more basic primal self incurs a real trauma & shock in the process, we just are not designed to go thru this !!! up to the very recent past in our evolution (maybe a few hundreds years at most) our bodies would expect to die (sorry very morbid) after the assault we have been thru - with this in mind it is strange but understandable that we expect not only to recover but to do so & get back quickly to everything we used do & more - it is more strange that most of do within months actually achieve this result of a really good quality of life

as before - best wishes - please hang in there & you will look back on this soon as only a memory
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/6/2011 7:07 AM (GMT -6)   
I've struggled a bit with feeling like a burden right now. I can take care of myself, but I can't take care of my kids much at all and it's all having to be done for me and that is difficult for me to handle. I feel guilty, even though everyone around me is being so supportive and helpful. My baby is eight months old and I can't pick him up at all and I hate it. :-(
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/6/2011 7:21 AM (GMT -6)   
Coming up on 4 months for hubby. Although it is his body this happened to I can so relate in some ways. Having seen him suffer for so long and to now finally get his life back, the recovery is a slow process and some days he comments that he feels like an old man...well he will be 65 this year so he is certainly no spring chicken I remind him...lol. But yes, now that the pain is gone and the tough part of the healing is behind him and we are experiencing a bit of a challenge with a rash and finding the right combination for him all he wants is to just get back in the game so to speak and live life. He really is doing that but at a slower pace and needs to be more patient.

Losing a major organ like that and the wonders of medical science to be able to fix him and survive is amazing overall but of course there is a "mourning" too associated with that and the realization of the different way in which he must eliminate now on a constant basis. Always checking that things are ok and not failing after having a few mishaps recently kind of messes with your head a bit too.

But all in all - he is so grateful as am I to be alive, out of pain and the advantages overall really do outweigh the disadvantages. Us women do handle things more emotionally I feel due to our makeup and yeah I'm sure it's a hormonal thing too.

Having these types of forums for support is worth its weight in gold I feel. Family and friends who are supportive and understanding are also important but to be able to come here to interact with others with a total understanding really does help. I know it helps me A LOT and I convey so much to hubby on a regular basis as I am the one on the computer but he is very much a part of all this too indirectly.

I hope today is a better day for you bluegrass and tomorrow even better. {{{HUGS}}}
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 4/6/2011 4:10 PM (GMT -6)   
I get like this before my period is due, I don't get PMS as such but feel I am completely useless at my job and as a person for about a day then back to normal again. Was feeling pretty sorry for myself few weeks ago and really nervous about going back to work yesterday after being off for 4 1/2 months.

Trouble is people think I am a really confident and tough mentally person and so don't think I can ever have a confidence crisis, but at moment am having to tell myself I am good at my job and can do it again. They think I will just stroll back in and start straight back in being their top member of staff again and it is hard to live up to these expectations.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 4/6/2011 8:16 PM (GMT -6)   
Blueglass, what you are feeling seems perfectly normal to me and you are not overreacting. Your body has faced an assault of sorts. Even though I really wanted to get surgery because I was so sick, I got extremely sad and emotional afterwards. I am normally a very positive person and somewhat stoic so this was strange for me. I sometimes wondered if some of it had to do with the the lowering doses of Prednisone, but I am guessing it more had to do with me grieving my old way of life. Though I had UC (including the undiagnosed time) for 10 years, it was mild for most of that period. It was only in the past couple of years that UC got much worse for me, so the memories of my more carefree life were not that distant. Though I love the health my ileostomy has given me, living with one definitely takes more planning. I have gotten used to that now, but in the beginning it seemed so overwhelming, and I just wanted things to be like they were before surgery and before I had UC. After a while, I started to come to terms with my situation. It just felt weird because I had researched surgery, knew what I was getting into, didn't really have any regrets and had actually been fairly excited to have the operation because I was so ill... so these feelings post-surgery really threw me for a loop.

I too had complications and they really started to wear me down. As soon as I felt well, something would happen that would set me back. Because of this, I had also had some pretty bad anxiety issues for a while. I actually saw a therapist for a session because I thought I needed some help. She gave me some helpful exercises for dealing with anxiety and worries.

Apart from the anxiety stuff, I also would cry unexpectedly all the time. I remember one day my husband and I stopped at the grocery store after seeing the new Harry Potter movie. I stayed in the car and found myself bawling when my hubby went into the store. I felt like I would never feel normal again. This is ridiculous, but Hermione had similar clothing tastes to me in the movie and I remember thinking I would never be able to wear my cute clothes again (which of course has turned out to be completely untrue... I still wear my skinny jeans:). This is just one example of the countless little things that would set me off. I felt really bad for my husband who came home to find me in tears so many times. Like you said, he didn't really know what to do when I was down. I knew that I just needed to grieve and cry, but that was hard for him to deal with because he wanted to help and be able to do something to fix it and make me feel better.

One thing that helped me was to get out to do something as a distraction. I found I got the most sad when I just sat around the house. At around 6.5 weeks post op, my husband decided to take nine days off of work, and we went up to a timeshare condo in the mountains that his parents had. It was a 7 hour drive there, so I learned that I could empty my appliance at rest stops no problem. I also had to change my appliance a couple of times on the trip too. I was already having new issues with my incision then, so we just brought all the wound care stuff along and my surgeon helped me with a few issues over the phone. The trip went a long way in increasing my confidence and giving me a taste of the "normal" life that was soon to come again.

As soon as I got back from that trip, it was time to return to work which was another huge step for my confidence level. I was overjoyed to be back to my job, and I soon realized my appliance caused no issues there whatsoever. Unfortunately, two weeks later my abdominal incision woes got even worse (as I mentioned in a previous post) and I had to go into surgery again. I missed another week of work after that surgery, but my surgeon was quick to have me return to my job because I think he realized it was making me happy. He told me I could just tote my wound vac around so that is what I did. I even taught a few nature programs with the noisy, painful contraption:)

Still, having that wound vac for six weeks made me go back to the crying stage because it was painful, and I again began to wonder if I would ever get better. And then, all of a sudden, as soon as that machine was gone and my incision was finally healed, my body started making this miraculous recovery both physically and emotionally. This was a bout a month ago and every day since then I have gotten exponentially better every day. The crying from sadness has been replaced by tears of joy (I am not kidding... I cried at a ballgame last night because I was so happy to be there and feeling so incredible). Now that I am past it, it seems like all that hardship happened in the blink of an eye.

It is difficult to believe when you are in the middle of it, but one day you will feel better and this will all be behind you. Until then, don't worry so much about the "whys" of what you are feeling. Just let your body and mind feel what it needs to and take it day by day.

On a side note, I also took a mindfullness meditation stress reduction dsclass around 8 weeks after surgery (recommended by my therapist) to help me deal with some of the pain and anxiety issues I was having. I ended up on the wound vac a couple weeks into the class, and I remember at first it was hard to get through the body scan meditation practices because all my mind wanted to focus on was the incision pain. After a few more classes though, I really found that the techniques were helping me relax and be in the present. I still do them now that I am healed.

Wow... another long and rambling post from me. Sorry:)
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/7/2011 6:18 AM (GMT -6)   
It's so helpful to read all your posts..... blueheron, no apologies necessary; villager, it's helpful to think about the primitive parts of the brain/body still thinking the surgery etc was an assault -- also another good argument for meditation, which enlarges the higher order parts of the brain.....and lots of other reassurance and things to think about from the other posts. Thanks.

My surgeon and stoma nurse called this the "funk phase," and confirmed that it's really common. My surgeon was a bit worried about me, as before this I was this kind of model patient who was coping oh so well w/everything; she said if I'm like this when I next see her in a month, she'll insist that I talk to someone or go on anti depressants. Talking to "someone" is fine w/me, not really wanting new drugs, doesn't seem necessary (no judgement on others for taking them), and well, part of the point of the surgery was to be on fewer drugs.

I am very psyched that I got all my stitches out (ouch, though.... skin was closing around them) and the nurse showed me how to pack my butt wound myself....it's really easy at this point; it's not that deep, and I can do it w/out a mirror. This means no more visiting nurse, which is great --- it's been bugging me to have to wait for the call in the morning, then have them tell me when they'll come. I've had at least 15 different people, who I practically greet with my butt wound.... there's just nothing about that that feels like normal life, and it just kind of reinforces a notion that I have nothing else to do but wait for them.

My surgeon thought I should get back to work sooner rather than later. I realize that I am pretty burned out on my job right now and that is somewhat independent of my illness, so some of the mixed feelings come from having spent the last few years doing practically nothing but working and being sick ....and during this time having the parts of my job that I like the least (administrative) expand and expand, while all these people would say, "You have to put your health first.... and, oh, and I need the schedule that I told you about 5 minutes ago by 8 am tomorrow." One of the parts that I really like (teaching) has been taken over by others because I was sick, and it's too late now. So, I guess I'm not eager to go back and not be able to do the good parts and feel guilty and like I need to do more, so load up on the bad parts....

Fortunately I'm only 6 weeks into my medical leave and my workplace pays us, which is amazing..... so, I can take a few more weeks and officially go back after graduation (when no one works as much). I also realized that it's not all or nothing .... so I'm going to go in next week to see people and will also do some projects that I want to do. And maybe think about adding some non-work things to my life before jumping into work when I'm still low energy and having things feel just like they used to....

It's helpful for me to work this out and it's sunny out today, and at least for the moment (which is what we have) I am feeling better. Hope you are too (or will be soon).
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 4/7/2011 7:28 AM (GMT -6)   
I laughed when I read your post about greeting the home health nurse with your butt. I was lucky in that I pretty much had the same nurse each time. Still, every time she came to the door, I would have my pants down with my appliance and wound vac tube hanging out. It was pretty funny. I always joked with her that I did not greet all my guests this way.

Seeing a therapist helps. I only went to see mine once, but she helped confirm that what I was feeling was completely normal given the situation. It was nice to just have someone to talk to who wasn't in my immediate family or a good friend. She did not feel I needed medication and thought the exercises for dealing with anxiety would suffice. I would have been open to taking medication if she felt it would have helped me, but she did not feel that I was at that point.

It is weird returning to the real world. I had trouble knowing what to tell people at first. I went from being super secretive at first to now telling anyone about it who is curious. It just felt like too big of a thing to hide... I mean, people wonder why you have been out for so long. So I started telling people I had surgery on my colon... then they wanted more specifics. I know it wasn't that they were trying to pry... they genuinely cared about me and wanted to know what happened. I am pretty close to all the people that I work with and with the volunteers at my job site, so it felt strange to be so vague. Once I got more confident with the situation and had a chance to process everything on my own, I became a lot more open about it. Again, now I tell people about the ileostomy if they ask, and I have found they are pretty amazed by it all.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Post Edited (Blueheron) : 4/7/2011 7:54:55 PM (GMT-6)


blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/7/2011 7:59 AM (GMT -6)   
I've been keeping a carepage blog and a lot of my co workers are on it..... so, it's a bit weird for me the other way; they know a lot of details about my surgery, accidents with the bag, emotional ups and downs etc.... I don't know nearly so much about most of them....

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 4/7/2011 12:15 PM (GMT -6)   
I feel ya! After my colostomy surgery I cried everyday for 2 months. Like Blueheron, the random things would set me off. I just had a pity party everyday and some days there were 2. Eventually they got shorter and I got more accepting. I'd say give yourself another month before you start worrying about whether you're depressed. And if you don't want drugs (don't blame you there!) you can try just seeing a therapist, or herbal remedies like Black Cohosh or just eating some really dark chocolate (preferably in a goody cake!)

And boy doesn't it suck to have to show your bits to so many people! I can't even count how many people have seen me naked with all the times i've been in the hospital. I no longer have any shame ;)

Hang in there, and good luck! *hugs*
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11

veryblessed
New Member


Date Joined Apr 2011
Total Posts : 3
   Posted 4/9/2011 12:52 AM (GMT -6)   
Here's my short history before it put in my "two cents"..... Diagnosed with stage 4 rectal cancer in 9/2007. Sixteen weeks of chemo clinical trial (6 drugs at once) in late 2007/early 2008. Major surgery to remove 2/3 of my liver in April, 2008.  Sixteen more weeks of chemo trial from June, 2008 to October, 2008.  Every other week "preventitive" chemo all of 2009. Recurrence in rectum diagnosed in 1/2010. Radiation and chemo every day from end of March to early May, 2010. 2nd major surgery to remove part of my rectum and colon in 7/2010. Two weeks after surgery ended up in kidney failure with blood pressure so low the doctor couldn't believe I was still alive. Turned out to be caused by a bacterial infection in my blood and a pocket of e-coli in my pelvis (no one can seem to figure out where that came from). Surgery resulted in a J-Pouch and what was supposed to be a temporary (6-week) illeostomy. Developed a fissure which pushed back the take down. Meanwhile, in January, 2011 I was diagnosed again with tumors in the "good" side of my liver, in the lymph nodes under my liver, and in my left lung. Started back on chemo 4/1/11, every week for 12 weeks.  My biggest fear is that my illeostomy will be permanent now because I've been told that my cancer is not curable and surgery is not really an option for me anymore because my abdominal wall is completely shot.

I completely understand how you feel physically and emotionally but I find that if I did not have the Lord (Jesus) in my life I would be curled up in a corner 24/7. I try (really hard sometimes) to focus on the blessings in my life and not the trials. I also think of how many really really sick and dying people I have seen throughout my journey who are so much worse off than I am. Not to mention all the millions of people in the world who are living with some sort of devastating problem.

I really believe that if you take your focus off of yourself and count your blessings rather than your trials you will find that these feelings will diminish and you will be able to move on with whatever is "normal" for your life now.

God bless you.

Post Edited (veryblessed) : 4/9/2011 12:58:45 AM (GMT-6)


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/9/2011 10:38 AM (GMT -6)   
In many ways I try to do that as well. Hubby is a better adjusted person than I am and he is the one with the ileostomy so it's certainly more important that he is this way..lol. Us women tend to be more emotional anyway. In the very beginning we both adjusted and accepted it due to the obvious - finally out of pain, he is now back in control for the most part instead of the UC controlling him plus the fact we have several friends dealing with VERY serious health issues who would trade places with him in a heartbeat. That being said it does help to take the focus off youself if you can. You have to force yourself sometimes but it does really help.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/10/2011 6:45 AM (GMT -6)   
Veryblessed, you've been through and are going through a lot, glad you're finding comfort. I've never had chemo, but I've had friends who've gone through it, very hard.

I agree it's good to have perspective and think of other people, but I think it's also OK to feel all your feelings, just need to avoid drowning in them

I actually just got my period this morning, first time since the surgery .... I know this is a good sign that my body is healing, but sigh, one more body fluid from one more place to deal with..... in any case, it's likely that the hormonal stuff made whatever was going on for me worse.....felt like pms, actually was pms.....not that that's the only thing..... but the weather has been great the last few days and I've been feeling better more of the time.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/10/2011 6:59 AM (GMT -6)   
Yes blueglass...this is definitely all part of the overall process for sure. For women add the hormonal thing and that definitely doesn't help matters. You're right - it is ok to have those "pity parties" or whatever you want to call them...it is a release for sure. The main thing not to let it consume you is the key.

In addition to my husband's sugery and convalescence there are other things impacting me personally and my emotions have been like a roller coaster and trying to keep it all in perspective sometimes isn't easy even though he is physically dealing with more than I am.

Added to that I have two girlfriends in tough shape battling a brain tumor/cancer situation and another with breast cancer so my problems are small potatoes.. but I'm sure emotionally I have that added to the list of what has me down.

While there is so much to be grateful for and focusing on how much better life is now after his surgery as opposed to before it is still a challenge sometimes to try to be upbeat.

Take care - sorry about the period at this time but like you say it is good news in another respect that your body is responding and getting back to normalcy. Although if it was healthy not to get it any longer that wouldn't be so bad for you either.........I definitely don't miss mine but I am a lot older than you.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/10/2011 8:17 AM (GMT -6)   
UC wife, I think sometimes the caregiver role is harder emotionally than the patient role -- starting from the surgery, when my partner had to sit for ten hours waiting, and I slept though it.... It's been horrible when my friends have had (and sometimes died of) cancer and other things. You just feel so helpless.

My best friend from h.s. had the really bad kind of MS.....she was in a wheelchair, couldn't write, had to be turned over in the night, etc.... she died at 44. So, when I get into "why me," I stop that right away, because it could be so much worse.... and of course, if you go there, it's not hard to keep thinking of even worse things...

But on the other hand, we are living our lives now, and our feelings and our pain are real. I think the pressure to be positive and upbeat all the time can make things a lot worse. Grateful and upbeat some of the time, maybe even a lot of the time, seems a very good accomplishment for all of what we're dealing with....but all of the time is an unrealistic goal.... and just because other people have it worse, your pain is still your pain, even if it's from a splinter or a rude person in a line....

It is bugging me when people in my life feel the need to judge their own health issues relative to mine.... i.e. someone has to have surgery, and everyone is quick to say it's not as major surgery as mine was.... still a big deal for them, of course, and it's actually something we could connect on, makes it harder when the yardsticks are out..... of course, I have to fight the temptation to do this myself.

UC wife are you doing some good things for yourself? You deserve this.... even if your hubby is the one who had the surgery and some of your friends are sick....
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/10/2011 8:21 AM (GMT -6)   
Blueglass: It sounds like you are in a better place now than when you made your original postings about this. I'm glad to see that. It's weird how up and down this whole thing can be emotionally. I hope you continue to feel better.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/
New Topic Post Reply Printable Version
62 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Friday, April 20, 2018 8:10 PM (GMT -6)
There are a total of 2,953,782 posts in 324,041 threads.
View Active Threads


Who's Online
This forum has 162108 registered members. Please welcome our newest member, any1hearme.
392 Guest(s), 7 Registered Member(s) are currently online.  Details
California Dreamer, PDL17, Gretchen1, NiceCupOfTea, ShinytopPC, straydog, Michael77