Anguish

Losing hope again, and not because my treatment pursuits aren't working, but because I'm just examining my loss of life. My current status is... off prednisone, still minor bleeding that is controlled by diet, bowel is healing. Still on AMAT antibiotics. Still playing the waiting game, the one that I'm tired of. I'm so tired of it that I almost don't even care if my current treatment approach works or not. I am just so over it. The cyclical flares are ruining my life. What good is being healthy 8 months out of the year if the other 4 are torture?

Just lamenting the loss of employment, the ability to travel, all the opportunities passing me by. Someone asked me recently if I'd like to visit him and his family in California. Had to say no. How will I eat there? How would I make the trip? What happens if I get unwell or eat the wrong thing? Or if stress rears its ugly head?

Another friend asked if I wanted to go with her to Africa as part of her dream to visit the Savannah and see all the animals. Nope. Me going to a developing countries full of parasites and questionable sanitation? It would be a death sentence.

Can't work full time yet. Even when I'm "well", I can't really work full time. I've been on disability for 2.5 years now. Early 30's, and nothing to show for it. I got accepted into nursing school, it starts next September. Should I even bother going? What if I flare in the middle of the semester? What if I complete the program but then am too sick to have an actual job?

All my dreams are dashed.

The first couple years I flared I could tell myself a spiritual story about it. That there was hope. I could find a way. Things would get better. And now I realize the stories are just BS. This disease sucks, and some people suffer for no apparent reason. This is not a "lesson", it's a penalty box. I am watching life go by along with everything I'd love to be doing other than sitting here at half strength, with my life revolving around cooking just the rights foods and examining my bowel movements.

I spoke to my GI recently about surgery. I really don't want it, but I am languishing. He says that based on my current markers, surgery is not called for. My GP says the same. I go through really severe flares and then come out of it smelling like a rose, apparently. I have a scope booked for 2018 that should reveal the true state of things.

Thank you for reading. I am just very depressed. Being fully well or being so severe that all options are reduced to one makes a lot more sense than being neither here nor there. My solitude is driving me crazy.

I am sorry you're feeling down. Living with a chronic illness is stressful and can be discouraging, but these feelings usually pass. When things are good, you will forget about the illness. We all have ups and downs. It sounds like you're having trouble with the unpredictability of it all. That was probably my weakest point. I never knew what tomorrow would hold, and never in my life did I feel that way prior to UC. I always had plans, and goals, and with UC, i couldn't make plans and I felt like my goals were only there to be dreams, but never reality. I don't know what to say. I've had a lot of ups and downs, and there's a very good chance you will move onto a high, for many, many years, and forget about UC. Maybe it won't rear it's ugly head again for a very long time. I hope the best for you. I had surgery and my life has done a complete 180. I am back to having dreams, flying by the seat of my pants, learning, trying new things, eating everything. Try not to stress. The only to really be afraid of is surgery, and if you accept that it is the worst case, and it can end positive, then the fear will go away, and perhaps the stress will go with it. My surgery story is in my signature. It's long but details all that out if you're interested. Try to stay positive. Even in the face of the worst, things can get better.

I don’t understand, if you’re on disability than why aren’t symptoms worthy of surgery? If you want surgery then you don’t need your GI to sign off on it, go for a surgery consult and maybe that will put your mind at ease.

You’ll hear most of us (people who had surgery) that we wished that we had surgery sooner. I have the dreaded chronic pouchitis outcome, it is sooooooo much better than having UC. I can go anywhere and do anything when I couldn’t with UC.

Man I know that I can't be of much help but I just wanted you to know I know what you're feeling and a lot of us here have been where you are. I'll be thinking about you and I hope you can find some light in your tunnel soon.

2 months of the year is a lot. I agree with ks, if you're on disability, that is the perfect candidate for surgery. I actually had surgery to avoid disability. I have chronic fatigue too... I am always exhausted and working is really intolerable for me with the exhaustion, but I do it regardless.

I wish you the best. Having an unclear diagnosis makes surgery very risky - so I am with you, not worth potentially risking further disability if you're not sure what you're dealing with. In all fairness, I never believed I had UC either. I thought it was a pathogen, bacteria, something undetected, candida, leaky gut, something I ate (literally anything)... anything but UC. Surgery has cured me.

IVE had UC 32 yrs and i wouldn't let disease eat up my life so bc disease is getting to point of taking over my life I'm getting rid of the darn diseased body part on Jan 2nd.Colon not working anymore,just BIG-D everyday. We all deserve a good quality of life,i hope u fing yours

Connor77 said...

ks1905 said...
I don’t understand, if you’re on disability than why aren’t symptoms worthy of surgery? If you want surgery then you don’t need your GI to sign off on it, go for a surgery consult and maybe that will put your mind at ease.

There are a few reasons.

One is that my disability status is largely due to the secondary effects of IBD, like chronic fatigue, time consuming meal preparation, anemia, etc. If it weren't for that, my flares would only put me out of work 2 months out of the year. My bowel itself showed minimal scarring last year on the CT. It was already half healed by the time I got that CT scan. Right now I don't have urgency, I go 3-4 times a day. Stools are solid but blood streaked. I started going to the gym again and I'll re-start ballet classes in January.

The other reason is complicated. My UC diagnosis may not be accurate. My symptom picture only partially relates to UC. I also seem to have some small intestine symptoms. I tested positive for MAP which is known to cause Crohn's, something I could possibly have. The original scope I had before my first flare showed Crohn's-Colitis. Then because my first flare was so severe in my left colon, they just decided to go with the Colitis DX and offer surgery.

I live in Canada which is on public health care. Elective UC surgery is not really an option unless you have a limited prognosis. You pretty much have to be in long-term flare status which I never am.

Before I ever consider surgery, I need to rule out:
1) MAP infection
2) FMT
3) That there isn't a Crohn's aspect to this.

What's causing my depression is not that I'm not currently improving. It's that I improve only to flare again, every single dammned year. I wish I knew what was triggering this as a yearly event. If only I knew, I would make a life change no matter what it is.

If you have pancolitis it can “backwash” into the ileum and show a tiny bit of small intestine involvement.

I have a jpouch and now have chronic pouchitis so you can call it CD. It’s not nearly as bad as having UC. I really like my jpouch even with its issues. I have no urgency and can hold it for hours. I can finally sleep through the night.

If you really wanted to have surgery (it’s not ideal) but you could stop taking your medicine, flare and demand surgery.

Are you going to a traditional gasteroenterologist office? Do you have any teaching-hospitals nearby (at large universities) as they're often more open-minded, aware of the latest research, and willing to try a wider variety of treatments? Are you near the Cleveland Clinic, or the various Mayo Clinics? Maybe you need a second opinion...

I used to go to a traditional, old-school GI. Now go to a teaching hospital at a large university. I asked about FMT and he said his colleague there is doing a UC/Crohn's study. My old-school GI had said he doesn't have time to read up on research, he only knows what's approved today. Like night and day lol.

Connor

I am so sorry that you are so young going through this. I realize that most people have no idea how bad this disease is and how long people suffer from it. I don't think you should wait so long for a scope and I think you need to go all out and go to a teaching facility like already recommended. I would go into debt trying to get better care. I think an antidepressant is a good idea too. I agree with flowers gal.... even if you get better.. you can always get sick again anyway. Its awful.. Coping with the ups and downs is just part of it all. Go to an IBD specialist that only sees patients with UC or Crohns.

Connor77 said...

ks1905 said...
If you have pancolitis it can “backwash” into the ileum and show a tiny bit of small intestine involvement.

I have a jpouch and now have chronic pouchitis so you can call it CD. It’s not nearly as bad as having UC. I really like my jpouch even with its issues. I have no urgency and can hold it for hours. I can finally sleep through the night.

If you really wanted to have surgery (it’s not ideal) but you could stop taking your medicine, flare and demand surgery.

How would you describe pouchitis in comparison to UC? Isn't it painful and doesn't it still affect your.

Treated or untreated. My pouchitis like most others responds well to treatment. If I don’t treat it then I get ulcers in the pouch. Symptoms are lots of noise (gurgling), diarrhea and difficultly emptying my pouch. No urgency what so ever.