just confused

Rachel,
You are NOT alone. My pouch is almost 19 years old, and I had the best pouch ever. But lately it's cuffitis flare after cuffitis flare. This time it is not even responding to meds,and my RV fistula is killing me and is way too active. I don't even know what's wrong, I think I may have another abscess or something. Very painful.
It's horrible. I am sad and scared too, especially when meds don't work because we start to wonder what is going to happen next. What is the worst that is going to happen? Why am I not feeling better?
I know this isn't really helping you, but you are helping me. I do take solace in knowing I am not alone, and my case is not so unique.

Days like today I wonder if I would be better off with an ostomy. I had a one-step, so it's really unchartered territory, but that is how desperate I feel today.

I have hope for tomorrow, as you should also. Maybe you start to feel the turn around and notice you feel a wee bit better. That is what I hope for you.

C-jay

In my mind, a stricture is there or it is not. It is not something that gets better and worse, then better again. You may have that constant narrowing that makes you more sensitive to inflammation. The fact that the steroids calmed the symptoms is telling. Even considering possible euphoria of steroids, there still is the physical difference. How about a longer taper or perhaps Entocort (even topical HC or Entocort)?

I agree that the mind factors in big too. Between the pressures of work and family, you also worry about your own health future. Many of us have been there. We don't want to let our family down or be a burden. I wound up choosing to let my career go and focus on home and health. But, I was lucky that we could afford that option.

Bottom line, there never are any pat answers or straight forward solutions.

Good luck!

Jan

CJB, You're exactly the kind of person I need to hear from today. NOT that I want you to hurt; but like you, knowing I'm not alone in this journey is at least comforting.

I was the poster child for the perfect J pouch!! Never thought that things would come back to haunt me. I still don't have regrets, but the further I get into issues, the more I wonder how life would have just been better with an end ileo. Perhaps had I known, I would have made a different decision, but I don't think so (I was 19 at the time). However, in 1991, it was touted as a "cure," and now we know, that isn't the case. It's just a new normal, and issues can rear their head at any time thereafter. My GI has confirmed that to me. Old pouches are starting to have issues.

Just look at you and me.

I tried a gloved finger, and even though the dilator I have seems to pass, the opening there is about the size of my pointer finger. And I'm a small woman. *sigh* I think it IS stricturing again. I think my CRS was right, and I need another dilation, quickly.

I think that these strictures are happening related to my fistula and chronic inflammation around that cuff area (though it seems "mild" to their eyes, the CRS has always used the word "inflammation" when talking about the strictures, etc). I can't figure anything else out, you know? I did honestly feel better on steroids last week, but the taper was quick, and it's like BAM! it wore off and got worse after them.

I'm trying to have hope that the Humira will help in time. I know my GI is taking a chance prescribing it for me, in the hopes it will heal the fistula, too... I WAS hopeful, last week... my husband is worried about me, because I'm again very deflated, since AGAIN, here I am with issues.

I can't seem to catch a break for more than a day or two. It's very disheartening. May I message you from time to time, to commiserate with a fellow poucher in need?

Rachel, there are so many emotional reactions we have during our pouch journeys - shock, fear, denial, depression, regained strength. And we ALL go through them. Something happens to us when we're tooling along just fine, conquering something that could potentially be anything but fine, and then things change for the worse. It's scary, but maybe especially for you because you were tooling along for a good twenty years. I think the therapist is a great idea (I see someone to keep my tendency to go to the worst case scenario in check.) Antidepressants may not be necessary. Managing your response to a discouraging period with your pouch may be enough. Wish I could be more help I just know how you're feeling, and I only had a pretty easy pouch for one and a half years. Think about your options, even write them down, talk to someone and go from there. Sending cyber hugs!

Thanks Jan and Lambiepie. I'm asking for a longer steroid taper, though he initially vetoed that last week. Going to try again, faced with the bad weekend I had. We tried Canasa, but I suppose I can ask about Entocort, etc. I messaged all docs involved.

I'm going to attempt a gentle dilation tonight... the CRS did explain to me how to do it (how he wants me to do it), so I'm going to, with the hubby's help and patience and support, try again. It's GOT to be narrowed. Again, it felt like the size of my pointer finger, though I didn't go past it... yet. ugh

I have to be the second income, albeit a smaller one, although I do only work as a 0.6 (meaning 24 hours on weekends only). I haven't called off in forever... but today, I just couldn't deal with it. Usually, even in mild distress, I can work, because work at least is a minor distraction for me. But today, no. Just couldn't.

Yep, and I know how non black and white health is... I see it daily in my job. My dad, who is a mathematician and facing his own GI issues always gets so frustrated when the docs can't just be like, "You have THIS. This is the treatment. And that will cure you." His mind works very mathematically, and he's frustrated over the gray areas in regards to health and how to achieve it. I'm like, "Dad. We're not robots. We're all different, and so many issues have similar and/or vague symptoms." But you know, I understand it. When you're in distress, you just want relief, and the waiting is hard.

My husband is the same way as your dad. He does not want a lesson on anatomy and physiology and why medicine is just as much an art as a science. He wants to know what is wrong and what he needs to do to fix it, hopefully without more pills or some complicated dietary change.

2+2=4, always!

Jan

Rachel,
PM me, or whatever, whenever.
I started to worry about 9 months ago when I started getting cuffitis and these spasms and then reading on this board at the same time about a few people who were having problems and they all seemed to have a pouch around 20 years old. And here I am with my 19 year old pouch....Hmmm. That got me worried.
If only we could look inside and know, really know, what was wrong. My meds, self prescribed this time around, are my Salofalk suppositories and Proctofoam. Today is the first day that I feel that it is not getting worse (new ways of measuring success!).
I too, think I had the best pouch ever. I really felt 100% normal, and even forgot about the days when I had a colon. I ate everything except apple peels.
I never thought it would come to this, when I would start thinking of the alternatives.
It's so easy to get down, but keep your mind on something else. It's all going to happen whether we worry about it or not.

Take care. Be good to yourself.
C-jay

At least a glass of wine is liquid, lol. Sometimes that glass is what gets me thru the evening. I'm no alcoholic, by any means, but it relaxes me, so I indulge.

I love food. Love it. Having to edit everything is making me CRAZY.

I'm losing hope I can ever feel better again. So sad today. I hate the fistula, but I feel like God's teaching me a lesson to appreciate when things aren't horrible by just adding more and more to my plate.

The fact I feel like my sphincters aren't getting the message like they used to, that feeling like, "oh, I gotta go," is adding to this tremendously frustrating situation.

I think the last dilation just did something. In the past, I might have had a week after one to get my groove back, but this won't let up.

Just so sad and tearful today.

Sorry this is so unrelenting, Rachel. Brings back memories of my UC flare just before surgery. A cuffitis flare is similar for me too, but it does calm in response to treatment. I sure hope the prednisone kicks in soon so you can get some relief!

I would be wary of another dilation so soon, unless you would be getting some long acting local anesthetic!

Jan

It's just like things won't RELAX to let me go, then I'm all clutched up anyway, so that's not helping, either.

So Jan, with cuffitis, would you struggle to evacuate stool? I STRUGGLE sometimes. This morning wasn't easy, but it was pretty much liquid, so it did eek out, for the most part (though I did relent and pull out the emergency fleets bottle and rinsed out what was left). What exactly were your symptoms? I had a mucusectomy, so I thought I'd be less likely to have cuff issues, but I guess the fistula issues bring on (or are a result of?) some inflammation, and maybe just over time, things just won't chill out. I really hate this!

Today, I was like, screw it, and within reasonable limits, I just ate: 2 eggs, 1/4 of a very ripe peeled peach, a waffle, a yogurt... then went and had sashimi lunch at a local place I like to go to. I'm pretty sure my pouch is pretty empty, still. This morning, had to struggle to get stuff out, even the soup I ate last night.

The GI is actually switching me to the medrol vs. prednisone, since I'm not seeing the bump like I had with the Medrol pack. That will start tomorrow.

I failed prednisone years ago, don't know if because of that, the prednisone isn't working for me (I guess you never know)... they said you know, it SHOULD work, they're both steroids, but they did say some people will for whatever reason, get a bump from one better than the other. So we're switching.

Humira tomorrow.

Yes, with cuffitis I get that urgency, then unable to empty once I am on the pot. It is like the sphincters are in spasm. Maybe a muscle relaxer or antispasmodic would help with this? This does not sound like the regular stricture stuff. But, I'm sure you can have both. Still, if you can get the dilator in there, why would you need a dilation? I'd be afraid of more trauma at this point.
I do also almost always have bleeding with a cuffitis flare. But, I do still have my cuff mucosa.

Jan

The weirdest thing right now is no urgency at all (maybe that's good?). I haven't gone since 5am (however at that time, I'm pretty darn sure I was EMPTY, especially after the enema... yesterday I ate very sparingly and very low residual). I don't feel BAD, particularly, I've passed some gas on the toilet when I've peed... but this isn't *normal* for me, so I find it oddly uncomfortable in that sense.

I'm so confused, I really, really am.

Guess I'll find out soonish what it's going to be. I've added a small very chopped up Caeser salad (why not? gotta see what's what), and I'm going to have two draft beers tonight (draft beer USED to make me go... less so as I age, but I'm going to give it a whirl).

Funny how soooo many here are trying to slow things down, and I'm like, PLEEEAAASE just let me GO!

Rachel, I already gave you this idea in another thread but don't know if you tried it because you didn't answer my message (shame on you :-)) : have you tried using a catheter (while possibly irrigating the pouch at the same time) to empty your pouch ? Have been doing it for the last weeks and it works pretty well ...
Might be somewhat risky if you have a fistula though, so talk about it to a doc first. Good luck !

I will do a small fleets when necessary. Sorry I missed your suggestion. Not done full on irritations, though. My stool this week was thin and hard to pass, but it's coming out now.

Today, things are normalizing I think. The steroid must be kicking in. I don't know. I'm not gonna get all overly excited like I did last time, but my whoosh of gas was there. I wonder if I have a bit of IPS on top of things (with the vacillating issues). It's possible. But today, all was evacuated.