Small Issues Feel Big After Major Surgery

... but I'm finding that lots of 'little' things are. Wonder if I'm in the minority in this.



As some of you realize by now, I'm a positive person, and I'm pretty good at not sweating the small stuff.... I can live my positive thinking/living in the moment approach to life a lot of the time; and it does come naturally to me... but sometimes all the 'crap' just gets to me.



This is a vent - so I hope I don't bore.



And let me say that I know that so many of you great people are battling much worse things than I will describe, so I feel sheepish with the things I will bring up.



2.5 months since my ileostomy emergency surgery and for all intents and purposes, I'm doing well.



Over the many years of advanced UC, having an ostomy was brought up. A hole in my abdomen - I couldn't wrap my head around it. The visual? Would give me the shakes.



After my surgery, once I became more familiar with what my new life would look like (about 4 weeks for me); I seemed to relax regarding the whole appliance issue. Little victories like not sweating bullets before changing my appliance, not thinking I smell and look undesirable, not having my heart stop when I realize there has been no or little output for a few hours. The hole in my abdomen - I'm ok with it; and the appliance itself, the stoma and the mechanics of looking after my waste is not a big deal.



What is proving to be hard on me are things that the professionals are saying "oh, that's minor".



- Major hair loss (vanity I know, but I like my hair on my head

🔒 Login to see image

)



- Anal discharge with no real answers from the professionals (UC still in my rectal stump, treated with meds that did nothing, went on steroids (sigh, side effects), improvement and stopped steroids as UC seemed to be in remission.... 3 days and I'm back at square one. Have to wear a thick pad, some blood... and of course I can't go swimming with this going on.

- Vaginal pain - OW OW OW - finally my GP mentioned that it can take up to a year for the area to become 'normal' after many nerves were traumatized during surgery. I'm familiar with vaginal dryness (menopause) - this is passing out pain like I've not experienced before - so nookie is on hold

🔒 Login to see image



- Eating takes work especially when out - and I miss my veggies and red meat like heck. I've already been cautioned by my Ostomy Nurse not to gain too much weight. Carbohydrates and I are buddies and I've always been the person who looks at food and gains weight.

- My energy - where the heck did it go? Sure I take vitamins and minerals...

- Hernias - found out from my OT Nurse that lots of stuff I have been doing could easily cause hernias (was fitted for a hernia belt) I was told "it's pretty inevitable that you will get them"

🔒 Login to see image



- Where did my body go? I went from 166 lbs to 127 and am now at 135 (where the doc would like to have me stay). But with losing all that weight so fast (2.5 weeks) - the muscle seems to have gone.



Ok - that's enough - you get the idea. I'm proud of myself for accepting the ostomy so well -- why can't I just look at these 'little' things and say "not a big deal"?



p.s. Do any of you get this feeling from your various doctors "you've had the big operation (in your case that saved your life)... some minor discomforts/aggravations come along with it and you just may have to put up with them"



Thanks all

Hi Beatrice - I am still going through these feelings several years beyond my stoma surgery ... at the moment it is due to a nasty taste in my mouth, nausea and terrible fatigue - I just can't keep my eyes open at the moment - this has been going on for many weeks now and I just keep getting different meds to try BUT I am just not functioning at all because of it - I have no energy, no motivation and am sleeping 14 - 16 hrs a day and feeling terrible in between. I don't know whether or not this relates to my stoma/ hernia or to my fibromyalgia or my diabetes though my sugars are running ok when tested.



What I do know is it is getting me VERY down and every time I see my doc - although he is absolutely lovely, he seems to shake his head and doesn't know what to do with me - I had a blood test last week, they generally come back normal, but it would be nice to find something that we can treat and know what it is that is making me feel like this! With the fibro I am used to having good days and bad, but so many bad one after the other is no life - in fact it is barely an existance and I am hating it...Will get blood results in an hour or so, but am expecting they will be normal as my tests always are .... will let you know! Hugs.... Rachel xxx

You're up early, Rachel! At least that is one thing with me ... I can sleep. Even after getting up at 3:30am to empty my pouch (I set my alarm), I fall asleep easily.



Hope the blood test shows something treatable ... well I actually hope it shows nothing ... you know what I mean. That not knowing what is causing you trouble is the worst.



Thanks for 'listening' to my whine ... it's a new day and I'll take it from here

🔒 Login to see image

.



But those darned little things ....



HUGS

Hey Beatrice,

                         Nice to see you again. I hope you're feeling better today.

🔒 Login to see image



I am going to lecture you....so pay attention

🔒 Login to see image

   I am guilty of the same thing, but don't EVER think your problems are any less upsetting or "less important" than someone else's. If it is a big deal to YOU then it is a big deal, PERIOD.

I went through that the whole time i had my ostomy and then it clicked with me while i was just in the hospital again that, while I am very blessed to not be in the position of so many people and to be on the mend, I still had a horrible, tramatic ordeal and I am still feeling the effedts of that trauma. It will take a long time to mend but with the encouragement of sposes, friends, family and good doctors, it can be done.

You are a wonderful, fun spirited, strong lady and you have lots to deal with.

That's why we are here, to be that sounding board and support for you when you feel you have nowhere else to turn.



As I read all the things you listed as "minor" problems, I felt for you so much and admire your strength. You will adjust and you will be ok through all of this.

I for one, will always be here to listen or lecture....lol



Love ya, Hannah

Guess what - the blood test came back NORMAL - he shook his head, took some more blood and a urine sample and I will see again on Thursday if he can find out what is amiss! Is it bedtime yet? zzzzzzzzzzzzzzz

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

beatrice.....you need to accept your beautiful self as you are.  You are the most important person in the world-it's all about you honey.



I had a urostomy: a total hysterectomy, tubes, ovaries and part of my vagina along with my bladder and ureter taken out all at 51!  Instant menopause-night sweats & awlful hot flashes-Yuk.  Anyway I have adjusted to the whole change in body and my body functions.  I met a nice guy and my vagina has stretched so intrecourse is not painful anymore.  I had rectal incontinence from the surgery.  All the new empty spaces caused someting funky to happen to my rectal spincter (the muscle controls holding back gas or poop).  It would not work-how embarrasing to leak out!!!!  My rectal doc said to take 6 tums per day.  It slows down your digestion and you get calcium as well.  I have found 4 tums per day works for me.  And I do biofeed back.  It consist of 7 minutes of exercising your spincter muscle 2x's per day.  I listen to a tape.  Look on the internet for it.  I saw a rectal surgeon for this advise.  I don't know if this will help, but it did me.  Let me know how you make out.

yeah...can't live with them, can't shoot them.



I'm sorry for all you "little" problems. (kick your doc in the shin next time he oh-so-ignorantly quantifies your suffering)  You are suffering. period.  None of us is worse or better. (I'm not upset with you...its the docs I'd like to strangle for you)



I found out I was vain when my hair fell out by the handful from the steroids.



Have they checked your albumin, B1 & B9 & B12????  weight loss & fatigue could be due to you eating your own muscle tissue for protein.



Pain may be your only symptom of something really important, so press for answers.  Nothing should hurt like childbirth except childbirth.



(((hugs)))

Beatrice,



     Thought I would put in my 2 cents.  Things you describe as minor problems may be that compared to...death on the wheel let's say but they are a huge part of life.  Energy?  Hair loss?  Fluids leaking out of your body?  Pain during intercourse?  I had the kindest doctor I know tell me that the profession has moved away from blaming and minimizing problems and into "quality of life".  They can save your life but if it sucks then what was the point?  I actually had a doctor yell at me when I described having to go to the bathroom 30 times a day.  I was seeing him to help me with this and he said "You should be lucky that you are alive."  Yes, I am grateful my cancer was caught and in time but hey, about the life in the bathroom?  Sometimes you really have to fight to get help in this life and have people take you seriously.  I have a friend fighting a recurrence of her cancer and she is frightened and worried but she is terribly upset over losing her hair.  As she should be.  And we ostomates have enough body issues to cope with we should at least have hair!  Good luck!

     Lynn

You guys are all so wonderful

🔒 Login to see image



🔒 Login to see image

brings tears to my eyes!



From my docs, I also get the "you should be glad you are alive/as good as you are" in words or in vibe - as some of you have experienced. At the time, I want to sink into the floor -- by the time I get home I'm ready to give them their very own ostomy

🔒 Login to see image





Nope won't settle for that - thanks to your encouragement I will keep at them to help me live the best life I can. I'm doing my part -- they have to do theirs!



Many thanks all. Today started pretty good - now it's much better.

I am SO glad that I'm not the only one doing the 3am pouch draining...

I was interested to hear all your issues as they match many of mine lately. I met with another friend who also has an ileostomy, and she too is saying much the same. I did go through a battery of blood work 6 months post-op and at 1 year. I am nearing the 2-year mark in April, but I found that my body was not producing/handling/using several necessary nutrients, so I am taking a supplement digestible pill for B and D, plus every other day a multiple vitamin with the correct amounts of iron, etc. It did not take long to get over the drained feeling, and I monitored the numbers with my GP, so now I have it under control. I am not diabetic but have only half a pancreas left, so that does affect the nutrients and missing enough small intestine and stomach as well, so nutrition is very different from pre-surgery.

I do have to rest a whole lot. I think some of it has to do with a broken sleep pattern (getting up to empty 2x) as well as needing nutrients more often. I get so frustrated.

Being a positive person and a retired science teacher of many years, I decided to watch what was really happening for a week. (It might help you to jot down the high and low times and activities to see if a pattern arises.)

I now know I have a high energy day and can do wonders every 4th day.

I found that a full large glass of V-8 plain worked wonders midday to boost energy.

To feel better about myself and less frustrated, I made a list of all the small things I could do and a list of all the energy or stamina draining things that needed to be done to keep me, the house, and the farm. Now I have a basket of good reading matter, a basket of hand sewing, and a trash basket near my comfort chair—when I sit to rest, I do whatever feels right, and the trash can is there for sorting through "stuff" that gets in the house faster than dust! I also try to make the slow times a chance to call a person who needs a chat (elderly usually) and write notes to shut-ins that need a ray of sunshine. I am a country person and live alone, but I can do HOSPICE calls and find ways to be useful. The stuff that really wears me out is being dealt with bit by bit—either by summer I can manage, or I will barter with someone to manage what is necessary.

At any rate, even after that process, I was so disappointed with living with limits—a sort of mental slump—but it has all turned around. Just needed to have a "little discussion with myself." This body, as rearranged as it is, and it "is what it is," and I need to stop trying to force old rules on a new body! It may be my age, but I also find I am far more physically and mentally exhausted in the evenings, so I do not go out much at night, especially in the winter. I also make sure I get at least 5 minutes of fresh air no matter what the weather—even at -30, it is still vital, even if brisk! In the summer months, I have a hard time staying inside, but I still have to rest as much.

I wish you the very best and hope this helps—this site has done wonders for me.