Living Over a Decade with UC

By BredaTheBrave

2 min read

I was first diagnosed with UC in 2012, but only after several years of a misdiagnosis of IBS did I consider this could be something far more. 10 years and 2 surgeries later I am still working towards understanding and managing my IBD symptoms.

The disease never seems quite the same.

Going from a bleeding colon, to an ostomy, to a j-pouch, you are forced to relearn your body’s needs and control how it poops! 10 years ago, as I lay in a hospital; scared, confused, and completely lost, I never fathomed my life would be transformed by my disease. I knew it would be difficult but I never imagined it would take hold of my life in so many destructive ways. I could never hold a job, I found myself completely bankrupt after so many hospitalizations and medications, and many times not having the proper care to take hold of my symptoms instead of them controlling me. It has been an arduous journey and there are many days I ask myself “Why me?” and other days, feel proud of all that I have accomplished. Besides, not many people can navigate the medical system the way I can after all I’ve had to endure on that front. I think a lot of you know exactly what I mean.

But I survived.

I have finally come out of my early recovery period after my recent ileostomy reversal surgery (4/28/2022). After a series of bowel inflammation, two bouts of C Diff, pancreatitis, and navigating a literal briefcase full of medications I am on my way to returning to the workplace and building my life back up.

You may have read a lot of studies lately about autoimmune diseases like IBD being linked to mental/emotional/physical trauma. As a survivor of childhood abuse and domestic abuse, ulcerative colitis was inevitably the outcome and an additional battle I fought, alone, for over a decade of my life. I understand the struggle of feeling like all of these dark personal aspects of your life can make you interpret yourself as a complete outsider to society and for me those were the demons I fought practically all of my life.

Connecting with others who understand

I did find a way to open up and connect to people despite those parts of me. Finally, reaching the peak of acceptance for what my IBD means to me and how I can live with it has opened new channels and I am ready to be amongst others without fear of rejection. As much as I appreciate the people in my life, I am looking for communities of people with IBD who have gone through similar things I have so I can share these experiences with a fellow warrior! I have come to realize that I have so many questions that even my doctors can’t answer and besides, no one knows the experiences of IBD better than a person who lives with it! I am very glad I found this forum and I hope to discover more communities I can connect to as well. Thank you for having me. J-pouch surgery survivor

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Vern Laine Moderator & Contributor
Hi <inline-mention username="BredaTheBrave" user-id="5531607"/> I have had Crohn's for 34 years and can totally relate except I never had a J-pouch, it was never an option for me. I also agree that even though we all have great people in our lives who help or want to help and understand, no one other than IBD patients can truly "get" what we are going through. There are many places to connect with IBD'ers, this site for one, but many social media sites. When I was first diagnosed, there was no internet so no social media, it was a very lonely time. I envy the newly diagnosed, but we all seem to struggle and get through it with the help of others. Glad to hear you are doing better and getting your life back. I think that's what we all need in our lives. Let us know how you get on Vern - IBD Team Member
Sahara Fleetwood-Beresford Moderator & Contributor
<inline-mention username="BredaTheBrave" user-id="5531607"/> welcome to InflammatoryBowelDisease.net! I understand your journey on a very personal level, and I know it will resonate with many others too. As Vern was saying above, when I was diagnosed, it was 2007. I had my colon whipped out a week later and lived with a stoma for two years whilst I recovered, had a Jpouch built, and connected. It was a very lonely time. I've had plenty of ill health and surgeries since then too, and I can definitely say that being part of the IBD community helps a lot! I run a group on Facebook called IBDSuperHeroes. We'd love to have you. I can drop you a link via DM. You can also find the forums on this site here <a href='https://inflammatoryboweldisease.net/forums' target='_blank'>https://inflammatoryboweldisease.net/forums</a> which might be useful! 😀 - Sahara (team member)
1. BredaTheBrave Member
 <inline-mention username="Sahara Fleetwood-Beresford" user-id="2276597"/> Thank you kindly! I was diagnosed in 2012 but had symptoms for years prior to finally getting the diagnosis. This disease as taken a lot from me including the entirety of my 20’s where I was unable to build a career or save for a home. People judge me a lot but I did not choose to be sick and I have fought long and hard to stay alive. I continue to remind myself of my strength and perseverance each day but like you said, its lonely, especially when you can’t find people who will understand. Thanks again and take care!
2. Sahara Fleetwood-Beresford Moderator & Contributor
 <inline-mention username="BredaTheBrave" user-id="5531607"/> I was lucky in a way, as I was diagnosed FAST. I basically became unwell overnight, and after just two weeks I went to A&E and was diagnosed that day. I was admitted for treatment and lost my colon less than a week later. I was 19 when I was diagnosed, so I hear you! I feel like my life has been on pause so many times, for such long periods of time, that I'm very behind. I started an online IBD community on Facebook back in 2014. FINALLY, I had people who understood me and my journey, without the need for a whole backstory! Priceless! - Sahara (team member)
harpat949 Member
I believe all gastrointestinal diseases have to do with gut microflora. So it makes sense to improve the gut microflora by introducing beneficial organisms into the gut with probiotics or fermented foods with active culture. A problem with this approach is the microbes get destroyed by stomach acid and they cannot reach the intestine where they are needed. But there are ways to circumvent this. There are probiotic pills that are designed for intestinal delivery using an enteric coating. It is best to take it on an empty stomach with a medium to large glass of water. It does not have to be expensive. The one that works for me and my brother and others based on Internet feedback is Super Acidophilus complex with 10 Billion active organisms. I purchased it from Trader Joe's because the store was very close to me but there should be other stores. There are many types of probiotic pills to address other issues but may or may or may not work for this purpose. It cost about $11 a couple of years ago. It is worth a shot. For me it worked in one to two days but because of your 10 years of infection it may take a little longer or may only provide partial relief. These pills contain the same or similar organisms as some yogurts with active cultures such as MountainHigh yogurt. But again the problem is stomach acid. So you can try this method which I often do just for maintenance purpose. I put a level teaspoon of yogurt in a medium to large glass of water and drink it first thing in the morning on an empty stomach. The idea is to fool the stomach it is just water and hopefully it will exit the stomach as quickly as water. As I don't have any gut issues, so I don't know how effective it is but I do feel generally better. It could be just the hydrating effect of water who knows but well worth a try. If not very effective , you can try the pill approach.
BredaTheBrave Member
Hey, I appreciate the suggestions. Anything helps. My doctor prescribed Florastor because of the C Diff potential I have but my insurance refuses to cover it so still at square one with that. Hoping for relief soon!