Introduction:
I live with someone who has Ulcerative Colitis and I wish to help her start a network of people who understand where she is coming from. I am doing this, and not her, because she is pretty stubborn and shy.
Ulcerative Colitis Symptoms:
bleeding, abdominal pain, nausea, diarrhea, hopelessness, depression
Hi. First off, I do not have UC but my partner Allie does.
She was diagnosed in 2006 and lost so much blood back then that she had to have a transfusion. Since she had been flare free for over 18 months she and her doctor decided it would be okay for her to try to stop the azathiaprine; she’s very concerned about the side effects. Three months have passed and she is in a pretty bad flare, the kind where sometimes water goes straight through. It’s so bad that she has taken 4 months medical leave off of work and quit her part-time job at a barn; she LOVES horses. She has had a lot of ups and downs in the past several weeks but the past couple of days have been pretty down. She doesn’t know anyone with Ulcerative Colitis and when she was at the emergency room for it a while a go she felt like they really didn’t take the disease seriously, so that’s why I’m writing to all of you good people. I know that there is someone out there who can relate to a severe flare and the hopelessness it causes, she’s in a really bad spot right now and I don’t know how to help. Since I haven’t ever had to deal with this horrible disease all I can do is comfort her by telling her it’s going to be alright and that this will pass too.
If it were me I’d feel better to hear a story from someone who has been there before. Allie is not typing this herself because she has “given up” she told me and said that she just wants to be left alone. If anyone out there can help out it would be greatly appreciated. Thank you in advance.
written by Jenny
submitted in the Colitis Venting Area
I live with someone who has UC and I wish to help her start a network of people who understand where she is coming from. I am doing this, and not her, because she is pretty stubborn and shy.
Hi Allie
I’m actually writing you from my hospital bed. I just received 2 units of blood. I was diagnosed w UC back in 2010 but I have been unable to get this stupid flare under control for 28 months now. I’ve been on steroids and asacol since the beginning and more recently tried remicade and humira with no luck or hope of remission. I tried the scd right before my first hospitalization and I hadn’t any luck with it either. At this point my body is so sick and so tired I just can’t stand it anymore. I’ve decided that surgery will be my next course of action to get this nasty disease out of my body. I know how it feels to stay in bed and just wish and wish to feel normal again. Talk with your doctor and others who are going through the same thing. I think it could really really help you. Good luck, and I hope all goes well. Just remember, you’re not going through it alone.
Vicky
I don’t have UC but my son was diagnosed 3 years ago at 10 years old. One of the best resources I’ve found is support through this Facebook group. So many people are members to offer support and advice. Even if she is too shy to post, I am positive she will find information by just searching through the group. Please encourage her to join up! You too! My son had his colon removed last summer and everyone was incredible through it all.
http://www.facebook.com/ihaveuc
My son who is 5 has uc he was diagnosed last year. didnt any medications help your son with it or did it get worse as he got older? Its one thing i worry about a possibility my son could have his colon removed at a young age as he at school and would make him an easy target for other kids to pick on him with having a bag.
Mike, My son was started showing symptoms (16-20 bathroom trips, bloody, mucus, cramping) in January of 2008. After 2 separate sets of scopes he was finally diagnosed in 9/2009. Throughout that time he was being treated as if he had UC. By Fall of 2010 we had exhausted all medication options. He either couldn’t tolerate them (6MP affected his liver) or they stopped working to prevent the symptoms. It was then that we had to turn to Remicade. I did NOT want to go with Remicade. The chances of adolescent boys that discovered cancer after using this drug terrified me. But, at this point he was steroid dependent. He could not be weaned and remain symptom free. We had 2 options – Remicade or surgery. Surgery wasn’t an option because he was in the middle of his 6th grade year and had already missed a ton of school. We had to get him to the summer anyway we could that included less steroids. We decided on Remicade. He had 4 infusions total. With my son (he had a grandpa with colon cancer) it was never a matter of IF we were going to have to remove his colon, but when. WE wanted to control the when. He had his first surgery May 2011, and his take down (reversal.. connection to the Jpouch) July 2011. He had the ileostomy and bag for 7 weeks. Even with the complications he had with surgery, the pain, the pain in the ass bag.. he doesn’t regret the decision at all. There IS life after a colon removal… so please don’t think it’s the end of the world IF the time comes and that is the choice you’re left with for your son.
My heart goes out to both of you. {Hugs}
She should not have to feel alone, and certainly is in good company. I had to leave my job for a month after being hospitalized. I had never passed so much blood, and been in so much pain. UC can certainly make you feel isolated & miserable. I too love horses, and consider them very important in my life.
She’s understandably fighting depression.
It sounds as though she needs to find a good doctor (imperative) and needs to find a medical approach to reduce this recent flare, and how to manage UC. We all go off our meds & learn how quickly the bleeding comes back. It’s a lifetime medical management illness, even surgery has its commitments afterward.
Support is key, and please encourage her to read these blogs and connect with these fb pages, websites. First she needs to get a medical handle on this, and the depression should resolve with remission. It is quite difficult to find ‘normalcy’ in UC. We all have good days & bad, some more bad…but with proper medical intervention & support I hope for a compromise with most things. I work PT now, I can’t do what I used to- but I try to keep a balance as best I can. If I can manage a good day, I saddle up & ride my horse, even just for 15 minutes. Or even just go out to groom him, brush the mud off etc. I lean on him & talk…horses are quite good listeners :)
I am not afraid anymore to ask for help- I have laid all my cards on the table with my friends, employer. It is what it is. Please encourage her to reach out!
This site is a good place to start :)
Allie,
Mate, it’s ok to feel shite. But remember this is just a blip. It can get and does get better. I have periodic flares and I ALWAYS get better. It is a learning process of what does and doesn’t work for you. Azathioprine didn’t agree with me either and I had to stop. I am a vegetarian and went gluten-free and that seems to help me heaps. Prednisone is great too (but you don’t want to live on it forever). When I have a flare I take 40mg pred and a week later I am heaps better. Then I taper down the pred…talk to your doctor about this if you haven’t already.
Good luck and chin up,
Peter
I totally understand where Allie is coming from. I was diagnosed with UC 17 years ago when I was 10. I have had my ups and downs and plenty of flares. Let her know she has to keep her stress level down. From personal experience, when I get stressed or change something in my life is when a flare begins. Two years ago I had a flare that lasted over a year. I have been on several medications including asacol, imuran, cipro, flagyl, iron, iron infusions, prednisone, mericaptopurine, you name I have been on it. I am currently experiencing a flare right now, waiting to get into the gastro tomorrow. Back in the day I was scared and embarrassed to talk about my disease but now, I feel as if it is better if people know. Still to this day I plan everything around the nearest bathroom. I make sure i take Imodium before I go out to dinner and never go shopping after I eat. I don’t know what age group she is in but if she wants someone to talk to that has had a long battle let me know. You can still achieve your goals in life with this disease. I graduated nursing school and had two children during my battles. I never let UC get the best of me.
Thanks everyone!!! She was so touched when I read all of your posts to her!! She started oral prednisone yesterday and will start back on the Azathiaprine today. When she has enough strength she will be replying to everyone.
Thank you Adam for starting this website for this dumbfounding disease, I’m certain that you don’t realize how many people you touch each and everyday because of your efforts. Thank you, thank you.
Dear Jenny,
You’re incredibly amazing, and I hope Allie comes through the tough times quickly, it would be great to hear what’s on her mind if she ever feels like sharing. Good luck with the recovery and dropping the symptoms, its people like you who make life and fighting past UC worth it!
LOTS OF HUGS TO BOTH OF YOU!!!
I would look into trying probiotics right away…
My doctor also told me to buy GABA (you can buy it at a co-op or health food store). It is an amino acid that helps our brains deal with the stress. Stress triggers flares, and then we get stressed out about the flare not going away, it’s a vicious un-ending cycle. I’d give it a try.
I feel your pain… I know how terrible it is, plus on top of that, there is nothing the people around us can do… there’s no one to talk to, no one around us understands… hang in there. It will get better. Tell her she’s not alone… there’s lots of us out there.
Hugs to you both. I hate that Allie feels alone, but it’s easy to understand how. It’s a hard disease to talk about – personally, I was diagnosed in 2007 and only told my best friend exactly what it entails last week. As another poster said, I’m not sure of her age, but if she wants someone to commiserate with, please reach out to me. I have a milder case than most, but I’m no stranger to the ups and downs of depression, social anxiety, tiredness, blood, being too scared to eat that surround this disease.
As for you, you’re doing a great job by posting on here and trying to educate yourself on the disease on her behalf. As Polly said above, it feels like there is nobody who understands. The more aware you are, the more you can provide her emotional support.