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23 replies

Life is sooooo bad right now

JillyJillyMember
Hi all,
(I'm posting in General Discussion because I have no real idea where this should go. Rant and Rave? Yes. Help, Need advice Now? Yes. Ostomy? I dunno...!)

I'm losing it. I've had my j-pouch since October 2001 (one-step surgery, so no experience with an ostomy.) I am just about ready to take a significant amount of pain meds in one dose and chuck it all. Life is not good in my body.

I've had leakage and pain since the very beginning. Actually, I've never NOT had leakage. Chronic pouchitis? Yep. Got that too. Scar tissue pain? Constantly. Blockages? Hell yes. Two requiring surgeries, and both surgeries yielded peritonitis and more surgeries, inflammation, and scar tissue. And then there's the on-going minor blockages that just cause wretched pain!

Sleep? Yea, no. I started keeping a log last week. My best night was pooping at 11:30, 1:30, 3:00, and 6:00, which is when I get up every day cuz I get sick of trying to sleep. Last night was 11:30, 12:30, 1:30, 2:00, 3:00, 4:00, 5:00, 5:30, and I got up. Since I started keeping the log last Wednesday night, I've had 3 nights like this. I'm so freaking tired and depressed.

Depression. Been on 40 of Celexa for years. My shrink (psychologist) wants me to add Cymbalta to the mix of meds. I see my pain management doc tmrw and will ask about it.

I'm a wreck. I'm thinking that maybe it's time to consider a permanent ostomy? I can't help but wonder if I'm trading one set of problems for another. I don't even wear contacts in my eyes because I don't want to deal with the maintenance! How am I going to manage with the supplies needed for an ostomy!? Although...I will save tons of money by not having to buy panty liners and pads! Wait, will I need them with an ostomy? Is that mucus stuff gonna leak? They seal up the butt for a perm ostomy, right?

I'm in real need of your help and suggestions. I'm depressed, discouraged, disgusted, disturbed, dysfunctional, and just "dis" everything. Is it time for me to get an ostomy? Or a gun...? Or what?

Everything that I've tried in the past has proven to be a temporary fix, so my cynicism is really soaring. Don't even start with suggesting things like Imodium and Metamucil wafers. If there's something "easy", I've tried it. Remember that I've been doing this dance for almost 12 years now...

Thanks in advance. Maybe I should go hang out in really dangerous neighborhoods. If I go to Richmond California often enough, statistics dictate that I'm bound to get shot eventually...!

Jillsy
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dgtracydgtracyMember
I would have probably given up this "dance" at 6 years or less since nothing was ever changing in your case. your log of sleeping sounds like mine, i have noticed that after my 6:00 or even 6:45 i could sleep a longer period..unfortunately i get up everyday for work at 6:55..its like my fake colon is teasing me...the comments about a gun or wanting to go to a dangerous neighborhood to get shoot may or may not be made in good fun but if they were serious maybe you should mention that to your psych, do they know that you feel you are at the very end of your rope?
Jan DollarJan DollarModerator, RN, retired
Jilly!

I am so sorry you are feeling so boxed in without much in the way of options. From what you describe, it does sound like ileostomy is likely your best option. You deserve a break, and especially some sleep!

But, with your surgical history, I would tend to think that it would not solve your obstruction issues. But, maybe they'd be less? You could look into continent ileostomy to avoid the external appliance. If you get a consult from a surgeon who does these, he could tell you if you were a good candidate, or if you have too many adhesions.

Hopefully your pain doc approves of the added antidepressant. And, yes, stay away from the guns and handfuls of narcs, please!! Come here to vent often. We do "get it," even if we are not living your nightmare...

Take care,

Jan Smiler
J JillMMember
I'm so sorry you are having such issues. I had chronic pouchitis 3 1/2 years and decided to have the pouch out and an end ileo. That was 12 years ago and the best thing I ever did. As for the "stuff" you need with an ileo, it can be done in a low maintenence way - I'm a less is more girl and use only powder, wafer, eakin seal and bag. Change every 3-4 days, takes less than a minute.

It's a big decision but it gave me my life back. Have since had two kids now 7 1/2 and 5. I do everything I want to, and I take no meds except immodium at night when I remember...

Let me know if you have any questions about the perm ileo, the surgery, etc...
aka KNKLHEADaka KNKLHEADMember
Sorry to hear about your difficulties. While I have not suffered like you have, I have gone through four surgeries to get things right, lucky enough to feel "good" 90% of the time .. but my surgeon reminded me that I should feel good all the time! I am giving Dr. Shen a last shot to see if his sinusotomy procedure can help, but seriously considering closed ostomy for good. I always felt very good with ostomy and it may be the way I go here pretty quickly.

I hope things turn around for you ...
C chiromancerMember
quote:
Is that mucus stuff gonna leak? They seal up the butt for a perm ostomy, right?


Usually that is correct with pouch removal. It seems its about 75 Barby butt/25 anus intact with people that go directly to an end ileo. With Crohns they always remove the anus and sew you up. I had my pouch removed after about 20 months and left the anus intact. Really didnt want to deal with the healing of that wound which can but not always is difficult. I have minimal excretions, wear no pads wipe it with TP once or twice a day when I empty, not a big deal at all, and so far am happy with both pouch removal and leaving the anus. Not sure how you have put up with leakage for as long as you have as that was the main reason I had my pouch removed. All the other issues were, for me,livable. I had associated butt burn which really made it difficult.
suebearsuebearMember
Oh Jilly, willy, I am so sorry. I know that if my jpouch crapped out on me; I would move on. For me quality of life is far more important. I lived 2.5 years without a life when my UC was bad; I still haven't gotten over missing out on those years. I know this decision is harder for you because it may not solve all of your problems, and could make some of them worse. I think a consult with a top surgeon might answer some of your questions. Hugs to you.

Sue Big Grin
n/an/aMember
It might absolutely be time to move on, especially if you've been treated for pouchitis/cuffitis with no relief from your night-time toilet trips. This kind of broken sleep can absolutely increase the feelings of depression...

I went through years of nights exactly like you describe, including accidents. I wish I had at that time made the big decision to abort the jpouch, maybe could have avoided additional complications such as my RV fistula.

Your despair is worrisome. Please see a good CR surgeon ASAP, discuss options, let us know how you are doing. And stay away from Richmond!
Scott FScott FMember
Although you may indeed have exhausted your other treatment options, it's worth considering whether any of the potential treatments were abandoned before enough time had passed or a high enough dose had been used to be sure of the lack of efficacy. For example, I use a maximal dose of VSL #3 DS - 4 packets / day. That's a very high (and expensive) dose, but it's really quite different from 1 packet / day, or a much lower dose of another probiotic. In any case, best of luck with whatever path you take!
ElmerFuddElmerFuddMember
Jilly, sorry to hear you've gone through 12 years of this. That's no way to try to carry on (notice I did NOT say, "That's no way to live" because it is still better to live - if not for yourself, for those who love you).

I have no simple solutions. Leakage from the start implies a mechanical issue with no easy fix short of ostomy. The pouchitis - I'm sure you've tried it all (though I have started swearing by Prilosec over the last year; reducing stomach acid does really help).

I'm kind of with Jan on this one - perhaps an ostomy with pouch removal is your best option at this point - not that it's an easy solution. It won't necessarily halt your blockage issues, but should help with the others. All I can say is that the 8 months with an ostomy allowed me to walk away saying, "Well, at least now I know if I had to I could live with one." It really wan't that bad - annoying at times, but not bad.

I was on Cymbalta for a week and it did NOT work well with my pouch. That may have been due to ramp-up issues (it definitely has a ramp up week with multiple side effects), but my diarrhea got worse each day on it. The possible ramp-down side effects were also enough to scare me to death. Someone else on the board had thoughts of death (not suicidal tendencies - but thoughts) while on it. So if you do take it, be aware of what you might be getting into. On the upside, it made me feel like a teenager I felt so good, and it helped with my pain.

Steve
JillyJillyMember
Thanks to all.
I just got a prescription for the Cymbalta, so good to know about the diarrhea and stuff. I'll look out for it. The doc gave me 20mg pills, but with a slow introduction of 10mg for the first week.

I'm going to start another discussion thread on options to the j-pouch. I thought it was pouch or ostomy bag. Silly jilly.

Thanks again. Still mortally depressed, yet getting a good nights sleep seem like something to look forward to!
vanessavyvanessavyMember
Oh Cymbalata! I call that the evil drug. It landed me in the ER. Take a bite of a pill and see how you react. Kpouch or BCIR is really it if you want to avoid the bag. You can call me if you want to hear how my life is.

BCIR is done in LA, Cali and in Florida. Kpouch is done at more places but I would only get one done at cleveland clinic in OH.

PS. I never get up to empty my pouch at night. Only if I eat a ton of food and pass out early by accident and gas bothers me. I too never had a ostomy and I know it isn't for me.

Pm me if you want my cell number.
Last edited by vanessavy
L liz11Member
Jilly, I am so sorry you feel so horrid. Been there done that myself. You only get one chance at each day you have. So its time for you to be able to start to savor that. My jpouch was a nightmare before I even checked out of the hospital after takedown. 6 months after that I got myself to the experts at CC. They determined it was built wrong. My local docs had tried everything and just decided I had chronic pouchitis, cuffitis, etc.. and I was supposed to live that way. NOT. Anyways.. I was so very sick that all they would do initially at CC was disconnect the jpouch as that is a very easy surgery. But I had significant problems with it even when disconnected. So 18months later I had the whole darn thing ripped out and I have never ever been happier. I am even one of the worst ones who suffered with significant complications from jpouch removal surgery and barbie butt issues. 18months of chronic butt wound issues.. but I still am delighted that I got rid of the mutant jpouch organ!

PM me if you want. I will even give you my cell so you can ask any question you want. I am happy to share with you all the wonderful things you can do with a permanant ileostomy, including dressing like a fashionita, riding a bike, swimming. As for supplies, etc.. once you get your "system" sorted out.. honestly.. I spend about 3minutes ordering supplies a month and about 5minutes every 5 days changing my kit. I am not making this up.

Jilly... you owe yourself a better life. Put your head up, trudge forward.. and figure this out. We are here to help you.. whatever you choose.
best,
liz
DT Diana T.Member
I have been a visitor to this site for many years but have never posted because there are so many other, more informed posters than I am. It is a great place to just read that others experience the same things I am.
However, when I read your post my heart just went out to you. I have been going through exactly what you are for 13 very long years, plus 4 rv fistula's, seton drains (still have them), etc. You do get to a point when you don't know if it is worth it to go on. I feel like have have spent my last 23 on the toilet. BUT, as my greanddaughter loves to say, even if you feel your life is really bad, you are still someone elses reason to smile.
I have finally decided that enough is enough and I just can't live like this anymore. I have had a temp ileosotomy before so I know what to expect and I have 27 days until my pouch is removed and I have a perm. ileo. My surgeon is very pro jpouch but he said some people's bodies never adjust and mine was one of them. He feels he can get rid of the scar tissue causing the blockages, that I will be able to eat salad again(it's been 13 years) stop the pain, the meds, etc. I will be running to the hospital for the surgery.
It stinks that we have been given these horrible diseases and the complications that come with them and then are forced to make very difficult decisions but I finally feel hope for the first time in 23 years.
Please, please get help and go see a very informed, compassionate surgeon who will help you through this. My thoughts will be with you.
TE MarieTE MarieMember
Jilly,

You received excellent advice so I want to address your depression and medications. I understand chronic illness, chronic pain and major depression.

Celexa quit working for me BIG time so I just tapered off of 60 MG and am almost at 40 MG of Viibryd to replace it. This is all according to my doctor's instructions. I also take 300 MG daily of Bupropion.

I also have Fibromyalgia and was put on Cymbalta around 8 years ago as besides helping depression it is to provide pain relief. This is probably why your pain management doctor is prescribing it as well. I'm also one that had a bad experience with it so please pay close attention to how you feel. I started dwelling on death and ways I could die at least a half a dozen times a day. I didn't contemplate suicide but it scared me so bad I stopped taking the medication without tapering off of it. That was one of the worst ideas I ever had - which is why Vanessavy says it's an evil drug, made me think about death and do a stupid thing.

Best wishes with all of your upcoming decisions. You have choices and that is a good thing. They may all appear as bad choices but that is only because we will never have the choice to have a normal colon with normal colon function. There are times in our lives when we don't like any of the options we have but we have to choose one that is what we feel is the lessor of the evils. Hopefully you will be surprised by the option you select as you will be feeling so much better than you are now.

I also know what you mean about your contact lenses but I have another theory. You are not getting enough sleep and I always found that made it difficult for me to wear my contacts all day so usually wore glasses on those days.

So please hang on until you get your decisions made. Better days are ahead! Also please consider Celexa might not be working as well as it was when you first started taking it. I hope Cymbalta works for you as it has helped many, but just in case it doesn't please pay attention and if you need to quit taking it please do so with your doctor's directions.

Look at all you've been through, you can't give up now!
Mental KaseMental KaseMember
Jilly,

You do need a break, and I want to give that to you so bad. I can't understand the actions of your Doctors and Surgeons, as they've seen the complications and the awful function of their work.

Now this is just sort of a wish I have for you because you've hung in a long time and it doesn't sound like you really WANT your butt closed and a permanent Ostomy installed (If I read you correctly). Now, I'm not an Anti-Prednisone guy, in fact I'm a Pro-Prednisone guy. I would be dead several times over without Prednisone.

Can they park you in the hospital for a pause in the action by way of high dose Prednisone and perhaps a Biologic Cocktail in the mix, just to shut it all down for awhile so you can get some rest and really assess the state of your GI tract when it is not in active crisis. I would like to see a team of Surgeons and Specialists give an absolute master class investigation of your condition, your status and the real options and real outcomes; all while you are parked and stable and comfortable.

Can they get you comfortable? Have they ever been able to shut you down and park you? I don't want to talk about me because this is your thread about you, but briefly -I hated the temp Ostomy. It was a constant reminder sitting on my right hip, and that damn bowel loop crawls around like slug, it just made me sick to deal with and look at it. I would do ANYTHING to keep this Pouch. I thought I was going to lose it a few times, it's 21+ years old now and I've not treated it all that well. And like you I've done the toilet every 45 minutes and eventually just stayed there all night and slept on the toilet -really sucked, and hurt like hell. Even when this stupid pouch is going haywire it feels like I'm sort of normal like other people who defecate from their rear end. Defecating from my hip made me feel like a monster, a freak and forever in fear of that bag falling off which of course it always does.

Back to you. I wish for you to be parked at the hospital, in total remission and comfort where you and a team of experts methodically go through your options. And when you get the strength -tell them they better damn well fix it, and fix it right!

MK-
JillyJillyMember
A quick update:

I saw my beloved GI, Dr. Hurwitz, last Monday. He told me that he wasn't thrilled about the use of biologics due to their suppressing the immune system. I got scoped last Tuesday, and my hubby said he had never seen my pouch look as bad as it did on those pics. My doc agreed; the inflammation and pustules and all those icky things were everywhere!!!

I started on 9 mg of budesonide in the morning. So now I'm taking the budesonide; Cipro, 250 mg per day; Flagyl, 250 mg on Monday, Wednesday, and Friday; Cymbalta, 40 mg in the morn; Celexa 40 mg in the morn; some probiotics; and some vitamin D.

I feel like a giant pill in the morning. And I'm getting these weird muscle cramps in my legs and butt. Not fun. Doc wants me on the regimen for at least two more weeks, assuming I can tolerate it. I'm seeing the wonderful Dr. Mehadevan at UCSF next Monday to ask about other treatments for chronic PI, biologics, and surgery. Dr. H thinks it would add value to get her input, so off I go next Monday! And I'm going to meet with an ostomy nurse very soon, to get more info on the supplies.

For this little minute, surgery is off the table as the meds have really helped the pouchitis and incontinence. BUTT I worry about the ongoing use of the meds and what if I can't tolerate their use for very long and how do I keep the pouch healthy in the long run? I'm not terribly optimistic about getting the pouchitis in check long term, as its never happened in the past 12 years!!

So that's my story... Thanks for all your help and support. You guys are The Best!

Jilly
Mental KaseMental KaseMember
Jilly-

Curious why the approach is so conservative? Sounds like if anyone needs the big guns it would be you? I'm stunned that Budesonide would be their answer to MAJOR pouch issues? I never responded at all to Budesonide even with minor Pouchitis. Is this treatment approach related to a prior side effect issue or an intolerance to immune suppression? Why not Prednisone to get some control of what sounds like a runaway inflammatory process that NEEDS suppressing. Argghh! Why am I frustrated?

MK
Lynne2Lynne2Member
Jilly,

Thank you for the update. I hate that you are going through this. You've gotten excellent advice above and, like I mentioned in your other post, I think the docs at UCSF are top-notch. You will be in excellent hands when you go there for another opinion. We are rooting for you and wishing you increased comfort and healing ASAP!
TE MarieTE MarieMember
Dear Jilly,

Thank you for the update. It does sound up from your first post. The plan doesn't sound like Disneyland but it sounds like you have good medical professionals on board.

It's too bad you feel like a big pill, I know just how you feel. There are days I skip my vitamins because I just can't swallow one more pill! Notice I pick the vitamins, I'm get so bad, Cool

Please keep us posted on your progress. You are sounding so much better.

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