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Finding hopefulness when it's hard

J

Justine C

Hi Fellow IBDers,

I've been lurking here for a while and finding lots of good advice but it's time to stop being a phantom and say hello.

My battle with this thing has gone on for 27 years and I'm struggling to believe things will get better. Sometimes it feels like the punches don't stop coming.

My Crohn's story begins 27 years ago. Diagnosed shortly before I turned 21 and had my first surgery in 98 when I had 60 cms of grossly abnormal (now that's a phrase no one wants to hear) ileum removed. Had a long period where my doctors kept trying drugs but didn't really know what was going on. Finally discovered perianal disease shortly before I turned 40. Had a temp ileostomy done in Jan 16. It didn't stop the abscesses, infections & pain, so I opted to make it permanent in August last year. In a fortnight, I'm having a stoma revision for retraction and a perianal wound debridement because nothing has healed properly. Drugs have never been much help - Humira didn't work even though I tried weekly, Remicade gave me lupus and I'm going to start Stelana once I am recovered.

I've never had a good response to drugs and I'm terrified that this surgery and Stelana won't give me any lasting benefit either. I have been told I have very aggressive disease and it's a struggle right now to believe things will get better. I don't regret my stoma at all - wonderful not to spend hours in the bathroom - and my doctors are caring and supportive and doing everything they can but I'm so tired of being a difficult case and having to put life on hold.

I thought I would reach out and see if anyone has some wisdom or suggestions. I don't want to feel like this but I can't seem to get my head in the right place. I'm hoping that others who know what it's like to have to keep faith in better days might be able to help me get there. :sign0085:
 
Trysha

Trysha

Moderator
Staff member
Hello Justine
Welcome to the forum
That’s quite a sad history and hopefully the future will have better things in store for you.
I’m sure there will be others along soon to add helpful comments.
Hugs
Trysha
 
ronroush7

ronroush7

Justine C said:
Hi Fellow IBDers,

I've been lurking here for a while and finding lots of good advice but it's time to stop being a phantom and say hello.

My battle with this thing has gone on for 27 years and I'm struggling to believe things will get better. Sometimes it feels like the punches don't stop coming.

My Crohn's story begins 27 years ago. Diagnosed shortly before I turned 21 and had my first surgery in 98 when I had 60 cms of grossly abnormal (now that's a phrase no one wants to hear) ileum removed. Had a long period where my doctors kept trying drugs but didn't really know what was going on. Finally discovered perianal disease shortly before I turned 40. Had a temp ileostomy done in Jan 16. It didn't stop the abscesses, infections & pain, so I opted to make it permanent in August last year. In a fortnight, I'm having a stoma revision for retraction and a perianal wound debridement because nothing has healed properly. Drugs have never been much help - Humira didn't work even though I tried weekly, Remicade gave me lupus and I'm going to start Stelana once I am recovered.

I've never had a good response to drugs and I'm terrified that this surgery and Stelana won't give me any lasting benefit either. I have been told I have very aggressive disease and it's a struggle right now to believe things will get better. I don't regret my stoma at all - wonderful not to spend hours in the bathroom - and my doctors are caring and supportive and doing everything they can but I'm so tired of being a difficult case and having to put life on hold.

I thought I would reach out and see if anyone has some wisdom or suggestions. I don't want to feel like this but I can't seem to get my head in the right place. I'm hoping that others who know what it's like to have to keep faith in better days might be able to help me get there. :sign0085:
Click to expand...
Hi, Justine. I hope the Stelara and the surgery take effect . There is always research going on and who knows what the future holds.
 
T

Tuff

Welcome to the forum. :ghug:
I too have severe perianal Crohn's, seven years now. I've gone through the drugs, Remicade gave me three good years until I had to go off. I've been on Stelara now for a year, and it's not working, so we just added methotrexate. My doctor is giving me 3 months, then it's surgery time. I want to avoid that if possible, because I just don't heal properly down there.
I have been doing everything I can to keep myself as healthy as possible. I keep stress to the minimum. I found out what my food triggers are. I don't do alcohol, nicotine or caffeine. Sitz baths really help a sore bottom. I try to get enough sleep, adequate nutrition, some exercise. I walk a lot.
It's easy to become depressed when nothing seems to work, you could talk to your doctor about going on antidepressants even temporarily until things start to look up? And come here and talk about things that are bothering you. We even have a vent board for those bad days. Hang in there.
 
J

Justine C

Thanks Tuff for the helpful suggestions & hope you can get some relief soon. IMethotrexate didn't work for me but I'm going to be combining 6mp with stelara.

I've been on anti-depressants for a long time and while they keep me from being mauled by the black dog, they don't stop me from having times when the reality of my situation hits me and I get a tad sick of it all. I had a good chat to one of my docs and although there's no guarantees, I know that my treatment team aren't going to give up on me, so I can't give up either.
 
B

Brokencolonbutstillrollin

Hi Justine,
I recently discovered I was severely vitamin B12 deficient, and since starting a high dose sublingually I’ve noticed some improvements, most noticeably reduced anxiety and depression. It’s not a cure-all obviously, and vitamin B12 might not be an issue for you, but it’s helped me mentally cope a bit better with the stress and fatigue from my current perianal disease. I just wanted to mention it, in case it could help you too.
It sounds like you have been through more than your share, and I hope you feel better soon and heal up quickly!
 
Lynda Lynda

Lynda Lynda

Member
Hi Justine 🌻
You are certainly a very strong person to have battled this disease for so long. Have faith in yourself. You will learn a lot here in this forum and your experiences and challenges will help others as well. I take anti-depressants too but sometimes I have to pull out my "coping skills toolbox" and practice some techniques I learned through Cognitive Behavioral Therapy ( in a group setting. ) Sounds like your treatment team is a good one and those are hard to find. I have learned that it is okay for me to "feel my feelings" instead of suppressing them. It's okay to have a good cry with a whole box of tissues, but also be aware if you start isolating yourself from people and activities. You are a great person with a wonderful future. 🙂
Lynda
 
J

Justine C

Thanks all - I have to say that just knowing that others are battling the same thing and have such kind words has helped lift me out of the blues Even though I know that is true, it's a great help to know that others out there have broken colons but are still rollin (your name is inspirational - I hope you don't mind if I adopt it as my mantra).
 
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