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Posted 7/10/2019 10:31 AM (GMT 0)
As per the title, I've been feeling immensely frustrated and depressed as of late, and wish to just get things off my chest, so feel free to ignore me completely xD

As of last night, I have started 150 mg per day of azathioprine due to non-response to multiple forms of mesalazine and prednisolone. I have not been overly keen on the idea of starting immunosuppressants, so this represents an act of desperation on my part as it seems like I've committed myself to symptom suppression rather than dealing with the root cause.

I have tried almost every dietary intervention I can think of, multiple supplements and multiple sources of probiotics in an effort to find a non-pharmaceutical method of managing the colitis. Nothing was effective.

If anything, dietary restrictions just seemed to make me more intolerant to foods that I could semi-tolerate before I removed them, so my diet has narrowed and narrowed to the point that whenever I look in my fridge and cupboards I feel a wave of misery at their barren-ness.

The two worst things about this disease for me are:
1) The seeming randomness of it all - I cannot fathom a stable diet to keep the symptoms under control. It seems that a food I can tolerate one day seems to make things worse the next. At least if I knew what to eat to keep me stable, I would stick to it gladly.
2) The knowledge that I will never be healthy again - prior to my diagnosis, I lived a pretty healthy lifestyle; I didn't drink or smoke, exercised regularly, healthy diet with no processed food and plenty of veg and fermentable fibre etc. Now, I'll likely be on immunosuppressants for the rest of my life and will never achieve the level of health like I had before.

I am seriously considering surgery. I know that J-pouches come with their own issues, but at least I wouldn't have to live with this f*@!*#% disease anymore.
Posted 7/10/2019 11:56 AM (GMT 0)
"this f*@!*#% disease"

pretty sure I've said those words a time or 2 since 2003 - like you and a ton of other folks, I was (or at least thought I was), pretty stinkin healthy - foolish me !

but alas, it is wut it is, and we just deal with the absolute suckiness of it -

when were you diagnosed ?
Posted 7/10/2019 12:29 PM (GMT 0)
about August 2017 if I remember correctly. Never achieved remission in all that time so I'm at my wit's end. I am "fortunate" in that it's only distal colitis I have to deal with, so I can still manage to get stuff done, but I'm just so tired of it all.

I have to say I've become very disappointed with the medical/pharmaceutical sectors throughout my time with colitis: every medication I can think of is purely symptom suppression. It feels as though nobody is searching for an actual cure (barring academics with diminuitively small research funding compared to big pharma) and we're deliberately kept dependent on drugs.

Sigh
Posted 7/10/2019 1:35 PM (GMT 0)
Sounds frustrating, sounds like you've been through a lot!

For me, a remission feels 100% healthy and is a great quality of life, despite being on immunosupressing meds. Taking meds does not make us less healthy, to the contrary it makes us feel better and regain a good quality of life.

Azathioprine is going to take about 3-months to work, they start us on a low dosage, increase after getting some good blood work, etc etc. Very slow acting meds.

While it's tempting to say "Check please, give me a j-pouch now as I am so sick of UC," know that no colorectal surgeon will touch you unless you have failed at least two classes of biologic medications (i.e., remicade and xeljanz as examples). Surgery is not a first, or second line treatment, it is often a last resort for us when everything else fails.

I'd like to think a cure will be found in my lifetime, but I am not at all optimistic about that prospect. With my awful luck, a cure will be discovered the day after I die lol.
Posted 7/10/2019 5:20 PM (GMT 0)

iPoop said...


While it's tempting to say "Check please, give me a j-pouch now as I am so sick of UC," know that no colorectal surgeon will touch you unless you have failed at least two classes of biologic medications (i.e., remicade and xeljanz as examples). Surgery is not a first, or second line treatment, it is often a last resort for us when everything else fails.
.

That is not an absolute. 3TC had his surgeries without ever taking an immunosuppressant. You can surgeon shop.

I was super sick during my first flare and failed steroids, I was offered surgery but chose Cyclosporine instead. Later I went on 6-mp.

I really liked biologicals over immunosuppressants like 6-MP. If you don’t like your Aza then I’d discuss moving to a biological. These meds are much safer than using Steroids.
Posted 7/10/2019 6:06 PM (GMT 0)
To clarify, 3TC had a medical situation where it was dangerous for him to take immune suppressors, and few have such justification for skipping them.
Posted 7/10/2019 10:34 PM (GMT 0)
I think you should have stool tests if you're not responding to the meds. What has your pathology showed when you've been scoped? Was the UC throughout?? Mild/moderate/severe? Was it definitively UC? When was your last scope?

As for symptom suppression, I totally understand wanting to find the root, but with UC, the root is believed to be AI. What would be the root? It's ingrained in your DNA or your body is attacking itself... what is the root of that? Diet? That could just be symptom control as well. Sure it's easier if it works, but I will tell you I tried just about every crazy diet and supplement I've seen mentioned on here without any luck. I think most of the people who have more severe UC go through that period where we want to try everything before taking stronger meds. The reality is, perhaps starting the stronger meds sooner would be a good thing. At least then either you will have success, or you won't and you can move on. Waiting and trying untested, and undocumented diets and supplements is just allowing the inflammation to progress instead of getting it controlled. I had surgery and I am thankful to be done with it all, but it is not an easy out. It's a lot of steps and there are a variety of results. For some people, surgery isn't the solution - for me, it has been. I am thankful for that each day.
Posted 7/10/2019 10:46 PM (GMT 0)
Immune suppressants have helped me a lot. We're 'lucky' that our medicines don't seem to lower our life spans, so I would think of them as unhealthy (except for the prednisone which sucks!). You definitely might get sick more often, but I think that's a small trade for remission (I've had my fare share of getting sick because of the immuno-suppressants, and being a little more fragile because of them but its definitely a great trade still).

Cures are always hard, but here's for being hopeful. I think the closest we can really come to a cure in our lives is the immune suppressants, because the disease Is basically just the product of our immune systems attacking our colons. I wouldn't be hesitant to take them If I were you. 6MP drugs like mercaptopurine, and the biologics like Humira are miracles. Try them, and hopefully they'll offer you some relief. Please don't limit yourself to dietary interventions instead of trying the next class of medicine. (pharmaceuticals are scary, but hopefully the fact that it doesn't lower our life spans is comforting)

As far as food, I've noticed that the further out I am from a flare the more my diet opens up. If you're flaring stay basic (I'm sure you know) but if your in remission then you can probably just eat what you want. It's not the food that's hurting us, its just how easy it is to retain/digest in concert with the inflammation and the IBS that comes with UC. 2 years is so long to be in a flare, and I couldn't even begin to imagine how that feels. But you should try to use all your medical options before surgery, because the J-pouch does cause you to go to the bathroom 4-5 times a day (no offense meant Keith, thank you so much for your help with my thread).

Like iPoop said, there's alot of box checking before surgeons will operate on you (and definitely before insurances will cover it). You gotta play the game and go through all the options before they do the final line of defense options.

If you want to try to follow a cure, I'd say we'll end up doing it with something like CRISPER or some kind of modified CAR-T cell therapy that can target the immune cells that are auto-immune. But that's neither here nor there at this point....

Post Edited (Sam1996) : 7/10/2019 4:49:14 PM (GMT-6)

Posted 7/11/2019 4:32 AM (GMT 0)
Just wanted to say that I was in your shoes. A year of flaring that was only controlled by prednisone. I tried all the diets and I mean I gave them the good ole college try but nothing helped - or not enough that it made much difference. I fought hard to not have to step up the medication ladder but I was slowly getting worse and losing more and more weight. I was a walking stick and horribly depressed before I finally agreed to a biological.

We chose entyvio and luckily I am now securely in remission. No side effects. I don’t get sick more often than “normal” people. Eating whatever I want — to the point that now I’ve gained all my weight back and so much more that I find myself dieting! 😀. I am sooooo thankful to have my life back. I understand that biologicals feel like a failure and a bad move. But living the UC nightmare is worse.
Posted 7/11/2019 4:22 PM (GMT 0)

iPoop said...
To clarify, 3TC had a medical situation where it was dangerous for him to take immune suppressors, and few have such justification for skipping them.

Medical anxiety, depression, and phobias about taking immunosuppressants seem like a valid reason to have surgery. If you need immunosuppressants and you refuse to take them then you will get sicker and end up admitted to a hospital needing surgery. I think that you'd have a small fight on your hands but a rational surgeon might consider the risk of someone not taking their needed meds and agree to do the surgery.

I took the other route and took every immunomodulator available. If I could do it over again I probably would have skipped some of the stronger meds and opted for surgery a lot sooner. Almost all of us who have had j-pouch surgery will say that we only wish that we had surgery sooner, even the ones with chronic pouchitis like myself.
Posted 7/11/2019 6:01 PM (GMT 0)
But would insurance consider that to be valid reason to approve a surgery costing many hundred's of thousands of dollars (can be $750,000 or more with complications)? It would take a long time for azathioprine or humira to cost that much. Health Insurance approval for something medically necessary is always a consideration, otherwise it is an elective-surgery paid for by the patient out-of-pocket (likely financially impossible). It is a numbers game to some extent, insurance presses cheaper options 1st before talking big numbers.
Posted 7/11/2019 7:47 PM (GMT 0)
One thing to consider is that what the insurance says things cost and what they actually pay are very different. 750k, means like 75k, hah. When I had septic shock from UC meds, the bill was over 550k. They actually paid a very small fraction of that amount - I paid zero. Same for surgery. The bills for my entyvio were at nearly 20k a month, surgery all in, probably cost 50k. I paid some out of pocket, but it didn't kill me financially. The large majority was covered because it was an in-network facility. If it's 20k a month, or even 100k now, seems like the 100k would be the better financial decision for the longer-term. I know for me, the loss in the amount I paid out of pocket has come back 3 fold in the years of not needing drugs, appointments, tests...
Posted 7/11/2019 10:36 PM (GMT 0)
As soon as you are admitted to the hospital that is In-Network the insurance company has very little say about it.

I’ve gotten plenty of out-of-network doctors covered while I was in the hospital.

I’m just saying that if you’re not taking the meds that you need then you’ll end up requiring surgery at some point. You walk into the hospital, get admitted and then refuse steroids and immunomodulators. What else can they do? I’d definitely plan it out. I’m just saying there is a logical argument for a surgeon to make for someone who has anxiety and depressed over immunomodulators.
Posted 7/12/2019 10:50 PM (GMT 0)
Thanks for all the responses guys, I appreciate what you've all said, makes me feel a little less alone in it all.

Notsosicklygirl - Initial colonoscopy and biopsies showed mild/moderate distal colitis. Follow up sigmoidoscopy and biopsies confirmed moderate distal colitis.

FlowersGal - I can definitely relate to the weight loss, the colitis has essentially stopped all my weightlifting activitie and I've dropped from around 90 kg pre-colitis to 69 kg at my latest weigh in - part of the reason I finally decided to start immunosuppressants. As for entyvio, I would much prefer to take entyvio than azathioprine, but here in the UK it's ruinously expensive and insurance won't pay for it, so the NHS is the only option for me to obtain it. And the NHS won't supply it unless I fail on azathioprine. So unfortunately it's not currently an option for me.
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