Living with Invisible Pain: My 20-Year Battle with Ulcerative Colitis

I find I am angry.

Starting at age 10, my energy was declining. I could not keep on weight and I was constantly in the bathroom because my tummy hurt.

The hurt got worse. Crying. Screaming in pain. Unable to do much of anything because I hurt.

I was told I was dramatic. I was lazy.

I was diagnosed with ulcerative colitis at 13.

Because this diagnosis is not something people can see, I was still expected to be like everyone else.

So I did.

Through the pain.

Through the accidents.

Through all the suffering.

I'm 30 years old. And prior to my surgery I was holding a full-time job, going back to school part-time, getting all As. Raising my son on my own. While falling behind in the housework. While constantly sleeping because I could not seem to keep up.

But I was expected to. So I did.

My surgery just happened.

Yes. It was painful. Yes. There are several large incisions because my large intestine was so swollen and sick.

But this time it's visible. There are scars. My intestine is now outside of my body.

Now everyone is on the same page. I am sick. I can't be expected to work even half the hours I was. I can't be expected to do even half my chores.

While I'm grateful for the validation, I'm angry.

The pain I have now...the pain I had even just waking up post-surgery... is NOTHING compared to what I've been FORCED to face and function with for TWENTY YEARS.

So while I am thankful. I. Am. Furious.

Worse, I'm hurt.

You poor, poor thing. My heart breaks for you, and I totally understand your anger, I would be livid too.

You're still here.  You went through all that whilst also still being a mother to your son.

The stoma, the scars.  I get how awful they must make you feel, I don't think anyone here hasn't felt that way, I know I did.

But the pooey wee swine hanging off my midriff saved my life.  Yours saved yours too, and has quite possibly opened up a whole new world for you, hopefully free from all the pain and aggravation that's been blighting your life all these years.

Can't promise it'll be easy.  But you're amongst friends.  We know the deal, we know where you're coming from, and if there's anything you need, we're here for you.

Hang onto the anger if you must, if it gives you some catharsis, but look to the future.  That's where your life lays.

Be well, and be happy xx

Heal up one day at a time. You can’t fix the past but you can control your future somewhat. Smile, you’re alive for your child. 

Sorry for all you have been through, but I'm glad you got some help for the problem. Even though having an ostomy can have its problems, it sounds like it is better than what you have gone through. This is a great site to get answers to help with problems. Sometimes we have to let go of our anger for our own sakes. Please feel free to ask questions if you need to. Best wishes.

Hi Wayof,

Welcome to the club! What you've been through sucks, and you should be angry/hurt. Many here have been through similar, which, while no consolation, does mean you're among friends now. Being only 30, you've got a lot of life left to live... so mire in your pain and hurt for a bit if you have to, and then you have to let it go. Take your time, there's no hurry, but you'll realize at some point that if you don't let it go, it'll be an anchor holding you back from enjoying the rest of your life. Leave it in the past, don't expect any sympathy from folks, and make the most of what lies ahead. There are a lot of silent warriors like us out there suffering from a myriad of things that go unnoticed every day. And every one of us was probably ignorant to some of that in the past... but our own experiences now give us insight into a side of humanity many never see. So, in a twisted way, you've been given a gift... and you're a better person for it. Even if right now only you and the rest of us know that... because over time, it's a pretty hard thing to hide.

;O)

bob

How to Stay Hydrated with an Ostomy with Collin | Hollister

Hey WOL23, hang in there; you have a long way to go. First, never give up. Others here have been the same, and you will find many answers as you develop with your new buddy. Yes, you may be hurt and upset, but you need to calm down and take it slowly. I know you are not used to it yet, and that's normal. You are still in the healing stage, so let it run its course. I also suggest you see an ostomy nurse ASAP and tell her what you are feeling. She will also help you with your appliance. In two weeks from now, you will see some change. In a month from now, you will see a big change. There is no reason why you can't work or do the things you used to do. It will all happen. Everyone here can help you. Ask questions. You will get good answers. Take care! Mike

Yeah. I was supposed to be off work for 8 weeks. Turned into about 9 months cause of a radiation wound that wouldn’t heal. Everyone thinks you heal in a couple of days. It takes everyone a different amount of time to heal. 

Hello Wayoflife23.

Thank you so much for sharing your thoughts and experiences with us as it is functional to be reminded that  we are not alone on our journey, even though the people who are closest to us in terms of feeling the ‘pain’ are often not that close in terms of physical location.

The emotional side of this journey is even less visible to the outside world than the physical , but that doesn’t make it less painful for those who suffer. Anger is just one of the myriad of emotions that can overwhelm us at times, yet it is quite a ‘normal’ response to traumatic events.

 I have often found that writing (communicating) about how I feel tends to be cathartic. So, over the years, I have written rhyming verse to try to encapsulate those feelings/emotions etc, and sometimes I re-read what I have written to remind me of how I felt. Your post gives me the opportunity of sharing one of my (many) rhymes which helped me cope with those wayward emotions of yesteryear and I hope it might show you that you are not alone in feeling the way that you do.

Best wishes

Bill

ANGER AND STOMA.

When I first had an ostomy 

an anger burst came over me.

there’s nothing I could do anew

as something in that anger grew.

Like the spores of any fungus

anger’s always there among us.

When once it shows and starts to grow

it has an exponential flow.

It waits until the climate’s right

then strikes at us with all it’s might.

So on the whole it takes its toll

and mushrooms way out of control.

It spread around my tiny brain

like dry-rot in the ground with rain.

Seeping along through every crack

I think it’s gone but it creeps back.

Anger’s such a strong emotion 

causing chaos and commotion.

It toys with us and makes us tense

and can destroy our common-sense.

The curse of anger’s happenstance 

can be much worse with circumstance.

And as a stoma’s an ordeal

that makes anger feel more real.

I think most of my anger was

directed back at me because

my stoma took control of me

and that’s not the way it ought to be.

But now I’m in control of it

and calculated the profit.

I’ve balanced that with what it’s cost

and think I’ve gained more than I lost.

                                                B. Withers 2013

(p.6. in: My Ostomy World. Book 3. 2014)

Hi Way, I went through the anger stage, the "why me" and so on, but in the back of my mind, I knew I had to get better first to move on. I have two siblings with Crohn's like me, but I'm the only one with an ileo. Now, with the new meds, the outlook is much better to control the disease. Good luck.

A profound reply.

Hi w30bob.

That's a profound response, I totally agree.

What a brilliant, courageous post "way of life lady".

I so admire anyone who has the intestinal fortitude to publicly say how they really feel.

Three thumbs up from me 👍👍👍.

"If you're mad, get mad, don't hold it all inside"…….Chrissie Hynde/The Pretenders.

Keep well.

V.J.

I’m new to this site and my ileostomy due to cancer surgery (Oct 21). Your post touched me because I’ve been having a really hard time adapting to my ostomy and feel angry that I can’t use the bathroom the way I used to. My situation is different because I didn’t suffer with agonizing pain like you and others with UC and Crohn’s etc. My stoma was created so the surgical site could heal and I am waiting to have it reversed. Due to Covid, non-emergent surgeries are on the back burner and my surgeon told me the other day it’ll be at least another six months before I’ll be called to the OR. I realize, after talking to ostomates locally, that the majority of people have an ostomy due to intestinal issues such as yours and are very grateful to be without their previous agony. They have their ostomies for life, and I don’t, which puts things into perspective for me. Thank you for being so open and honest about your feelings. Letting that all out is an elixir in itself.

What an uplifting post. As someone who has had an ileostomy for 47 years, I can really relate. Thank you!

Take yourself out of this trap. There is nothing you can do to change the past or even your present time, but there is a lot you can do to improve your future. Things will become easier for you as time passes. Believe me, I am a 40+ year stoma-mate. You will get used to your new life, and you should be thankful for getting a new chance that many people cannot get. When your friends are frantically looking for toilets, you can release your load whenever you are... Just think this way, and your mood will be better.

Hi, Way of Life... I'm Marsha, now 74, but got sick at 12 with ulcerative colitis. My parents opted for medical treatment, so I spent the next 4 years out of school, in and out of hospitals, on new and different medical treatments, drugs, side effects... like osteoporosis at 15, spent a year in a back brace... all while bleeding, getting transfusions, isolated from friends, and home... I'd cry and wish for a miracle or surgery... and then, when I was on the verge of death... dehydrated, getting more blood, pneumonia... I was told there was surgery available... and the next thing I knew I had an ileostomy. I adjusted easily... gladly, got out of my back brace, got back to school, graduated with my class... and for a while was grateful. Then came the anger... at my parents... They knew about the surgery but opted to trade years of my life, gambling on my "getting well." I think they called it hope. I married at 20... (to a man who had had Crohn's) and also had an ileostomy. But my resentment and anger grew, as I had complications with pregnancies... and although I had two children... beautiful little boys... they both grew up with inflammatory bowel disease... One with Crohn's, one with ulcerative colitis. At the time, we were assured the diseases weren't hereditary... But in reality, they were. My older son suffered with finding the right medical treatment for Crohn's... he knew about the surgery but didn't want it. At 15, I thought he had the right to know the options. My younger son was diagnosed with "spastic colon," but he was in more pain than his brother... and was sensitive to all kinds of food. It wasn't until he was 20, that he started to bleed. Diagnosed with ulcerative colitis... he was on Remicade... as was his brother. That treatment can cause problems as they get older (leukemia... or other kinds of cancer). My anger with my parents... continued for years... until both my kids were sick. And then I found myself in their position. It's not easy to do the right thing for your child... and when things don't work out well for them... they develop their own feelings about the parents who tried to manage their health issues. I wish I could say that I "forgive" my parents... but it still angers me, that they were willing to keep me in the dark for 4 years. I know I would have badgered them for the surgery. But I did get a chance to "walk in their shoes," and I know what they did wasn't easy for them. Are my sons angry at me? They won't discuss it. They have other issues with me... more related to their fathers and my divorce. We were a family of 4, with severe medical issues, that colored all aspects of our lives. We don't discuss it often, but we're all concerned about the health of the "next generation"... my 3 grandchildren... who are 10, 11, 13, the same ages that their parents/grandparents got sick. We all just hope that the medical treatment they may need in the future will be more effective and cause fewer problems... than the medications we had to take. I'm still trying to put my anger to rest. I'm grateful for the good years, and for the health of my children, and the health of my grands. I'm just sorry I never resolved the anger I had with my parents while they were alive. I hope they "know"... Marsha

Very true. And your surgery pain will be gone one day. 

My sister was telling me to get out of bed when everything hurt.  I finally had to tell her "you don't know what this feels like!"

You be angry.  Makes me so angry/frustrated that some family and friends ignore what is happening right in front of them.  I'm so sorry you've had to endure this problem for so many years without help.  The good news is you've found a place where you can be angry - yell, scream, cry and get help taking it day by day.  That's what I'm finding - is day by day I find my new life.  Some days are better than others and some just suck big time but that was also true before this happened so I need to keep it in perspective.  One thing that has helped me is to keep my eyes open for little "treasures."  Right now I'm working at one of my company's resorts with a pond outside my cabin.  Watching the ducks with their young-uns lifts my spirit.  I hold onto that.  Take care of yourself and keep talking to us.  We'll be glad to listen.  Jeni