Introduction:
Hi! I am Mom:) I enjoy family, friends, the outdoors and a good book! I have a habit of trying to “fix it” and I can’t fix this!
Is There a Light at the End of the Tunnel?
My son Brandon was diagnosed in 2010 at age 26. It is quite a long story which seems to be the norm, but I would like to cut to the present. Brandon was taking lialda, prednisone & azathioprine. He lost his job, lost insurance; as the lialda is so expensive we decided to try Sulfasalazine…He had an allergic reaction at a very young age to sulfa for an ear infection, but it was so long ago we thought it wouldn’t hurt to try. He has been on it for 3 weeks now; for the last 7-10 days he has not been able to keep anything down, feverish, achy, just not feeling well. Thinking flu…now I just don’t know. I am very concerned right now, but don’t know how much is due to ulcerative colitis, depression (He developed steroid induced depression for being on prednisone for over 2 1/2 years so he also takes lithium and abilify) flu or the meds. I am trying to encourage good eating, some exercise…there is no motivation…I think i t would be beneficial to read your web site, but no go…It is very hard to stay positive when he doesn’t seem to care, no fight left…there has been other issues because of all of this, so I know it is a difficult time for him, but we know he can have a good life if he chooses to make it so. I don’t know how far to push, it seems that it doesn’t matter whatever we say or do, we seem to be stuck! Wondering about a new doctor, but we have to wait on employment & insurance. I have been trying to learn whatever I can about this illness, I can’t begin to imagine how it really feels and I am trying to understand. Any suggestions would be greatly appreciated….I can’t give up on him!
written by Mom B
submitted in the Friends and Family Venting Area
I enjoy family, friends, the outdoors and a good book! I have a habit of trying to “fix it” and I can’t fix this!
I also am allergic to sulfa drugs. I am on Colazal which has a generic so should be cheaper. I hope he finds something that works soon and gets his fight back.
Hey, I just found out about my UC in Feb. after my 1st attack. I understand his frustrations and wanting to give up. I am 36 myself and feel like I’m 80. This disease does challenging things to your psyche. Tell him to look me up on FB and we can talk via txting…..jglissoning2013………I have probably had it for years and have ignored the symptoms. i am currently trying to go into a residential treatment facility for emotional distress which the medical has only made my mental worse. The best thing you can do is listen and know the pain is very real and debilitating…..mine never goes away….sometimes it is less….but always there. And the looking for a bathroom when you go in a new place or not wanting to go out to eat b/c you want everything you can’t have. it is hard to stay positive and you know your family gets tired of listening to you whine….I am loosing a five year relationship b/c of my medical/mental problems, so life does suck right now……but at least I have my Dad and stepmom w/o them I would be in a very bad place…..tell him I said hang in there….and message me and we can talk….Jamie
There is definitely light at the end of the tunnel. Sometimes there’s light in the middle of the tunnel, and then it gets dark again, but at the end, you’ll get to the light. (Sorry for sounding a bit cheezy)
When I first got UC, it hit me like a train. The moment I realized it’s not like a flu that you’ll recover from in a week or two, I kind of lost my fight too. Or rather, some defense mechanism in my brain got myself convinced that living without a colon would be awesome, so I tried to persuade my doc to cut it out. And since I had a pretty severe case, that almost happened.
But then, after a crazy long diet completely without food and after cutting out some bad medication, I got better. A few months later I was partying like crazy and doing all the other stuff that I had given up on. I went to college, studied abroad, was nicknamed “Mr. Fast food” because of all the junk food I ate. Eating like that was pretty stupid, but my point is that I could.
I used to be like him, not wanting to listen when someone found something new that “I really had to try”. But then all it takes are a couple of days where you feel better and you realize it doesn’t have to be all bad, and back comes the fighter.
Hang in there!
Hi,
I think you should definitely look into the meds being the reason for your son being so ill. Please do it ASAP.
Meds used to treat UC are dangerous, so caution is needed when any troublesome side effects occur.
Bev
Hi Mom B,
I’m sorry your son is going through such a rough patch! I agree with Bev, sounds like his meds are making him sick. I was diagnosed when I was 13 (now 24) and the one thing I’ve always appreciated from my family through all of it is that they refused to treat me like I was sick (they were still compassionate about it though)and tried to keep me from having too many pity parties. You might need to provide some tough love. UC is not the end of your life (I lived abroad for a year, hiked Mt. Fuji, and SCUBA dive). Like anything else, its what you make of it. I’m a true believer in positive thoughts playing a big role in our health. Easier said than done I know. Try connecting him to one of us on here or to a UC support group (CCFA has lists) and get him talking to people so he knows he’s not alone and there is light at the end of tunnel. He’s too young to let this speed bump stop his life.
Wishing you the best!
I was diagnosed at age 29 back in 1997. Tell him to NOT give up! I have spent a great deal of time in remission, even though I have been in a pretty bad flare for the last year now. It will get better! Surround him with love! My relationship with Jesus and a caring family and a couple great friends have gotten me through the worst of times. Change drs if necessary. They are not all the same! I found the Mayo Clinic to be so wonderful! Never, never, NEVER give up!
How often does your son get out in the sunshine, being sick we tend to hide indoors. It’s taken some time to learn that when I’m feeling crappy it’s time to do something outside!
Depresion really hurts, nothing hurts more than people giving up on you when you need them the most. Keep the comunication door open.
Since I’ve been diagnosed with U.C. I’ve jumped out of air planes, canyon swings, 11 countries, paid income tax in three, had people say that I’ve made them proud to be Canadian, my favorite was helping a blind Italian lady cross the street in Verona, not sure if I sent her the right way.
Momma B,
I’m 20 years old so I understand and I agree it’s very easy to get into a depression. You’re so young with this huge burden to try and deal with something bigger then we, as young adults, can comprehend. I was and still am dealing with this diagnosis(it’s been a year since my official diagnosis). I was actually in the middle of a minor depressive episode when I found this website, and truly, it has been a godsend.
Try to get him to read some of these articles on here, I find it helps to realize that we are not freaks, there are thousands of stories written by people who share the same issues. I’ve always been embarrassed talking out loud about my bathroom problems but on here it’s not as difficult. It’s a network of individuals who aren’t going to judge because we each know what he’s going through.
If he ever needs to talk about being so young and coping with this disease, invite him to reply to this post.
Hope my point of view helped and
just know it will get better,
Chelsea
Hi Momma,
So sorry your son is suffering. You are on the right site for support and just as important, really good information and guidance. So many of the comments above can be helpful to your son. Mike L mentioned he didn’t eat ANYTHING for awhile and although that sounds drastic, it is sometimes helps just to rest your insides and stop being in pain. And speaking of pain when I was first diagnosed one of my medications (Asacol) put me into severe stomach pain and throwing up throughout the day before I figured out it was the medicine that was making me have those particular symptoms. Adrian asks about sunshine – in December 2012 when I was going through a severe – can’t get out of bed – flare up – I started taking 4000 mg. Vitamin D – on the suggestion of someone on this site – and in a few days I had so much more energy despite my other symptoms.
And Bev, don’t know if you are reading this, but I finally ordered my probiotic and L-glutamine from Lucy’s Kitchen. Can’t wait to try both of these on your suggestion.
Momma – all isn’t perfect for me either – this disease truly kicks your butt and it is hard sometimes to keep a positive outlook. But with this supportive community and getting the right medications and supplements – there is hope. And best of all, he has you – you sound so caring and supportive and this is the biggest help of all. Good luck and let us know how your son is doing.
Hi Mom B,
I’m sorry to read your son’s story… it is very similar to mine… There IS a light at the end of the tunnel!!!
I was diagnosed at age 27, I was OK for a few months, and then had a HUGE flare-up… I lost my job, lost nearly 30 lbs, lost 4 months of my life… it is a difficult time. Your son needs lots of hugs right now.
My natropath Doc advised me to take GABA for the depression. It was a big help! Those days are truly terrible. I understand and sympathize with the lack of motivation… it is so hard, especially being so fatigued from the anemia due to massive blood loss…
The pharmeceutical drug route was not the way for me. I am on an anti-inflammatory diet (no gluten, no sugar, no fructose, no corn, no soy…) and it’s working for me. I have been in remission since the week before Christmas after 9 months of flare-up hell. I am also a big fan of probiotics… I take them daily along with glutamine, Vitamin D, Vitamin B-12, fish oil, and quite a few other things.
Thanks for writing! It will get better!
Hugs,
Polly
I’d like to acknowledge your love for your son. It can be so difficult to watch someone go through any illness. And as a mother you only want what is best for your child. Are there any support groups in your area, that he could attend?
You could check out Inflamed and Untamed,which is an online group. And this website here is full of great info, along with the youtube channel.
I wish him the best in his recovery with any battle he is faced with. :)