In hospital with partial bowel obstruction

Ack, you can blame Persona 4 Golden for my absence - no, I hadn't gone and got a life, don't be ridiculous >_>. But I had forgotten how ridiculously time-consuming RPGs can be. This one is no exception to the rule: I'm currently on a second playthrough, trying to do all the things I didn't do the first time, such as max out all my social links (oh the irony of playing a solitary video game which centres around being the bestest of buddies with virtually everyone in your small town).

Anyway, moving on from Japanese shenanigans... >.>

Yeah, it is hard to compare like for like with different tests. I think my GI kept track mostly through blood tests and the faecal calprotectin test: it was fairly easy for him because my blood inflammatory markers would rise. If your inflammatory markers don't change much, then it's a lot harder to monitor flare-ups without invasive tests. I think I remember you saying that your GI hadn't even heard of the faecal calprotectin test, which is a great shame: 'cos I would ask him to run a faecal calprotectin test and then to shut up about 'IBS' when it turned out to be positive (as I'm almost certain it would).

As you might guess, it irritates the living daylights out of me when GIs attribute IBD activity to IBS. IBD flare-ups are gonna cause secondary IBS symptoms: gas, bloating, cramping, loose stools and/or constipation. That's just Basic Obviousness 101: if you've got an inflamed, ulcerated, etc. bowel, it's also going to be a pretty irritable bowel. IBS, in the context of active IBD, is an utterly meaningless diagnosis, imo. Maybe I shouldn't say this, but I'm almost beginning to hope you will find a new GI. Your current one may be a very nice man, but he just seems to give you the fob off all the time.

It sounds like your partial obstruction may have turned into a total one... :-/ Just carry on drinking lots (preferably hot, clear drinks), don't eat, and try to lie on your side in such a way as to hopefully encouragement movement - if you can bring yourself to lie on the hospital floor, the hard surface would probably work better.

Best of luck, gumby. I really should've gone to bed a good hour or so ago, so I'm gonna go now. I'll check in tomorrow. Oh, and to end on a slightly more proactive note than I started with, I've filled in a housing form as the first step to moving out of home... <_<.

Edit: I took even longer to reply than usual.... D: Thanks, scifigal :p

Edit 2: I know I was more understanding of your GI in my first reply, gumby, but the bit about 'IBS' tipped me over the edge. It's such a massively fob-off diagnosis at times. Anyway, I must really, really go to bed, so once again, goodnight HW Crohn's board... >.>

Post Edited (NiceCupOfTea) : 5/1/2014 9:22:23 PM (GMT-6)

:( I am so, so, so sorry. Hospitals stink. And when you're in pain but trying to refuse the pain meds to get things moving, it's even worse. Praying for you!

He gumby. Sounds like the obstruction is slowly resolving, which is fantastic news. But I do think your GI is tooooo conservative. Waiting to see if the obstruction will resolve itself without steroids sounds crazy to me. I'm glad you are going to seek a second opinion.

Steroids do make one very emotionally unstable. My hubby dealt with a year on steroids with mindful meditatation. Just try to stay in the moment and find some joy in each moment. Easier said than done, but it did help my hubby.

One of my cats decided to have a hairball all over all the furniture in my living room last night, so I have to go clean it up before the dogs decide kitty barf is tasty. The joys of pets!

I hope you get to go home soon.

PV

Gumby,

Sorry you're still there. I totally get the mood swings. You're right .. I think it's a combination of the steroids and just general exhaustion and sleep deprivation.

Getting home and getting some sleep will help so much.

I always think of you because we were diagnosed around the same time; similar ages.....Hang in there - keep checking in - and feel better soon!

xo

Persona 4 Golden is ruling my soul... >.>

@gumby - I dunno, it still sounds like a fob-off to me while you are in hospital with an obstruction: IBS simply doesn't do this. Personally, I'd have gone nuts if my GI had told me I had IBS. I'd go nuts if anybody tried to tell me that now, after everything I've been through with this hideous disease.

I'm sorry to rush off; bit depressed right now and gotta a long day ahead of me tomorrow which I am not looking remotely forward to (nephew's communion). I hope you will get out of hospital very soon. Personally, I always found it a total head **** in hospital: always had at least one, if not two or three, major meltdowns per hospital stay. To be fair, I was a pleasant and obliging patient the rest of the time.

Anyway, yeah. Bringing back some bad memories, oh **** it. Sorry. It still bugs me. And I think I just found my 2nd reason for not coming to the Crohn's board much anymore.

Take care, gumby, like I said, hope you get out and back to (relative) normality soon....

*peeks in* Hi... >.>

I'm sorry about my last post. I was quite down when I wrote it. Still am, really, but at least the communion went okay. The best part was skipping the church service >_>. Long story short, there was nowhere to park, so I just dropped the other people off. Went back to my brother's place, put on some music, and chilled for an hour or two all by myself.

I can well, well understand not being able to take another minute of hospital. I found it an incredibly disorientating experience. It was also piercingly lonely at times: that's the drawback of staying in a ward where the other inpatients are surrounded by caring family and friends.

40mg of Pred is fine: standard starting dose for oral steroids. That said, if you don't feel significantly better by now, I have to wonder if the Pred is doing all that much for you. It always fixed me right up and very quickly: within a day or two I would feel miles better. Either you're steroid-resistant or your obstruction was caused by scar tissue rather than inflammation - I suspect the latter, but that's for a doc to determine. I had an MRI which concluded that my stricture was predominantly inflammatory.

Cut yourself some slack. 40mg is a pretty high dose; your mood should return to normal as you taper down, but I wouldn't linger on a high dose. Basically your adrenal glands get used to the external steroids really quickly and physiological dependency can result. There is no point in being on a high dose of steroids for any longer than a week or so anyway, 'cos if they haven't worked by then, they are never going to.

I suppose living in a small country has some benefits, in that you never have that far to travel to the next town :-/ I'm surrounded by a few towns/cities, each with their own hospital. No doubt some of them are crap, but the choice is theoretically there at least. Anyway, I do hope you make it to Chicago: get somebody else to drive if you can.

Hope you're feeling better by the time you read this, gumby. Well, how can you not, when you have such a ray of light as me on the forum.... >.>

Absolute trainwreck of a day so far.

If I don't get out of this house soon, I dunno what I'm gonna do. I can't live like this. It's torture. I'm sorry to say this in light of your suffering, gumby, but I'd rather have the Crohn's back. I'd rather have toxic megacolon end this misery. Absolutely no one I can speak to; life is unbearable.

Anyway.......

You need to get more calories in you somehow now, gumby. Your system has probably slowed right down because it's getting almost nothing to work with; not even thick liquids, let anything anything solid. Incidentally, if 40mg Pred is not giving you a good appetite, that's a sign to me that it's not doing a lot. If it had really kicked in, you should be raiding the fridge by now. I do understand fearing another obstruction, though, which is why I stuck to a liquid diet for a month. It was quite calorific: Fortisips (Ensure-type drink), soups, and peanut butter and banana smoothies. For whatever it's worth, I never had any obstruction while I was on it, although sadly once I was both off the steroids and liquid diet I was back in hospital again in a month. Both are only temporary measures unfortunately.

Good luck with your GI visit. I have an appointment with mine tomorrow morning, but am thinking of cancelling.

Edit: Decided not to cancel, but I will be like a zombie because it's a 9am appointment. Also, apologies for the depressive outburst... :-/

Post Edited (NiceCupOfTea) : 5/5/2014 5:17:38 PM (GMT-6)

Even if it was triggered by something you ate, the hard thing for your husband (and everyone) to keep remembering is that that trigger can then set off a chain of reactions due to CD. I'm so sorry you're going through this. The out of control feeling and dealing with everyone else's reactions in addition to your own pain and frustration is difficult.

Thinking of you and sending a ((hug)).

So excited for you Gumby!

Woah, that's good news about Dr. Rubin. I hope he's more helpful than your current GI.

Never got to see my GI. I went to the appointment, but - despite his name being up on the board - a different doctor was in. Saw him once before a long time ago and it was a waste of my time and his, so I just remade the appointment: for 18th September.

Gumby, it's nothing radically new, I suppose. It's just that I'm traumatized and I'm using that word literally.

Hey. That's great news about seeing Dr. Rubin so quickly I am sure a second opinion will help you make the right choices. You've probably taken care of this, but make sure your insurance will cover Dr. Rubin's hospital and procedures he wants to do. It'll be less headache in the end if they approve things up front.

I think taking it easy on the job front is a good idea. You need to focus on health right now. Keep getting better gumby.

Thanks everyone!
Guyfeelsgood...I definitely don't feel like I have an obstruction right now so I guess the steroids are helping.

I just saw my local GI. Every time I take Pred I lose tons of weight and have no appetite at all. Plus, I'm currently terrified of eating, so its probably a physiological and psychological issue with me. I know most people have the opposite effect, but the only time I've ever taken steroids is when I am very ill. We are dropping the dose by 5mg every three days.

My local GI was the nicest guy in the world as usual. He admitted that he isn't certain if my ileum is thickened due to scar tissue or inflammation, so he doesn't know if biologics or surgery would be best at this point. My guess is that they will do a follow up CT scan at U of Chicago, and we can compare the results.

I'm kind of ok. I tried to work for a half day today and felt like I was going to pass out, but I don't have pain and I don't feel obstructed. I actually had D this am, so I thought that was a good sign;-)

Thanks dorri!!