Non-Crohn's Bowel Obstruction

Gumby,

Just realized that you haven't posted in awhile. Glad to hear that you've achieved remission, but sorry about the recent obstruction. Could be scarring at the ana. site. Not sure if there's a procedure to stretch that. I suppose the worst case scenario would be to resect the ana. site. Hopefully there are some alternatives. Keep us posted.

Hey gumby. Are they sure there isn't a stricture at the anastomosis site (or elsewhere)? Even if you are in remission, the anastomosis may still be narrowed by scar tissue. My GI thinks I may have a stricture and has offered to stretch it (if it's not too long). I would talk to your GI about the possibility of a balloon dilation procedure.

Anyway I'm sorry about your obstruction and hope you can go home soon! Episodes like that are so gruelling. I had a bad today with my Crohn's - pain, diarrhoea, fever. Taken some painkillers which have helped, but I feel so drained.

I wish I could say something cheerful but I'm so depressed about this bloody disease myself I don't know where to begin :-/

Gumby: I’ve had episodes of excruciating pain/vomiting since last April. After every test know to man, they went in laparoscopically in July, but symptoms returned the next month. I’ve been on and off a liquid diet for months... most recently, no food for almost 4 months. I am so tired of this! Best of luck to you. And I totoslly understand how traumatic this all can be. I try to keep a positive attitude but it is very difficult when it overtakes your whole life. Hang in there! I hope you get relief soon.

@Juliet - I really hope your surgery gives you prolonged relief. Best of luck for today.

@Gumby - I suspect the inflammation at your surgery site was Crohn's - 'normal' biopsies or not. I'm not sure how much I trust biopsies tbh - would love an expert opinion on this (which mine isn't). I know from my surgeon that my colonic biopsies were negative for Crohn's after I'd had surgery. But I've always had a Crohn's diagnosis and even my surgeon described my terminal ileum as "classic" Crohn's. At any rate I've seen a lot of people here get fobbed off with being told they don't have IBD because their biopsies are normal, even though in some cases they have severe inflammation. But IBD is a wide spectrum with a large, indeterminate grey area in the middle.

Sorry I'm digressing now! But yeah, long story short, I suspect mild Crohn's inflammation at your surgical site. Another possibility is surgical adhesions. Adhesions are hard to diagnose because they can't usually be seen on an MRI/CT scan and there are no blood tests for them either. The only way to treat adhesions is surgery, which in turn creates new adhesions. They absolutely suck for the people prone to them and I hope one day they come up with a non-surgical treatment for them.

Dietwise, I have to limit my fresh fruit and vegetable intake too, which sucks. I hated vegetables as a child. Spent my 20s learning to appreciate them until I get Crohn's and have to learn to unappreciate them :-( I can eat very well done veggies but raw ones would probably cause me a world of pain. I could actually eat more vegetables with a stoma - I thought it would be the other way round after my reversal surgery, but it wasn't.

I understand about the becoming a little more traumatised each time. My eyes - an offshoot of the Crohn's - distracted me from my bowel issues for a while, but just lately my bowels have been bothering me. Meanwhile, my uveitis hasn't gone away but there is only so much worrying I can do about any one condition at a time.

God we're really cheerful, aren't we? I could physically deal with Crohn's better in my 20s, I think. But now I'm in my 40s and have never really had a decent break from it, I'm just finding it harder to live with than I used to. At least my absolutely crazy anxiety has subsided a little. Like I said before there is only so much worrying you can do about any one thing.

Sorry. I hope I haven't made you more depressed :-/

@Gumby.... I wonder if that doc you see at U of Chicago is the same one I am seeing in a week and a half? I am dealing with issues of things stopping up right after my ileum.... motility issues. Some are blaming the opioids, which I am sure they play a part... but I am having pain outside of that, too. Thinking adhesions and scar tissue. I am hoping to get some answers from him, we will see. I see my GI tomorrow and will discuss with them more.

Either way, this makes me feel better that I am not the only one with these issues... seems to be happening a lot lately.

I'm home from the hospital. I'm doing ok but extremely bloated which is very uncomfortable. I'm wondering if this is normal and if it will resolve on its own? Last time I had a bowel obstruction it was from a stricture and they left me on an all liquid diet until I had surgery, so I didn't go through this. They discharged me within 48 hours. I have had tons of D after they gave me laxatives, so I don't think I'm obstructed, and I'm not having the cramping. Any suggestions? I'm wondering if I should stay primarily with liquids until my abdomen goes down??

Oh Gumby so sorry to hear that you are not well. Those darn carrots! Believe it or not, well cooked carrots have sent me to the ER on 2 separate occasions (both the day after a holiday!). My fear for you is that you said you were going back to low residue because of one incident. Think levels of food rather than go back to eating next to nothing please. Yes, I have given up carrots forever now...but I still eat some other items that are not low residue when I am having a good day (I ate a small lettuce only salad this week-small only). Perhaps you can find that balance...I hope you can.
Wishing you well!

Gumby... think that is a great idea, to add in the miralax. Either that or MOM, I have had better luck with MOM once a day after lunch than I did with miralax after lunch. My GI is OK with me being on MOM but no more than once a day.

Just a quick update on my end... saw my primary GI today. Told them even without constipation, still having issues. They do believe it is scar tissue and/or adhesions causing these issues. That being said, she is starting me on hyoscyamine, which dissolves under the tongue. It is an anti-spasmatic for the intestinal tract. She is hoping that this will help replace the Nucynta I am on, and I am hopeful to. It would be nice to not take narcotics anymore.

I will keep you posted on my visit with Dr. Rubin. I am excited for it, as he may be able to look at things from another place. I am lightyears ahead of where I was in January, as I am now on 15 MG of pred and going to be off in 2 weeks (The beginning of January, I was on the equivalent of 100 MG of Pred in IV form, for a week in the hospital before they could wean me down... it took that long to calm my disease down). 20 mg is that usual "point of no return" for me. If I go below it and flare up, then I know nothing else is working. Being that I have been on 15 without flaring for two weeks, I am very hopeful that at least my Crohn's is managed now. Constipation also seems to be better, so now if we can figure out how to help the adhesions/scar tissue issues, I will be so much better than I have been the last couple years.

Post Edited (JakeB) : 3/6/2019 3:50:44 PM (GMT-7)

Quick update for me: Got a letter from my GI (I get a copy of all my hospital correspondence) stating that they're going to arrange a flexible sigmoidoscopy and decide whether I need a balloon dilation. He said nothing about having a flex sig at our appointment, but my IBD nurse said it was because Buckinghamshire (the county I live in) have insisted on further tests before agreeing to fund Stelara - Bucks don't want to spend the bucks. If I lived in Bedfordshire, the county my hospital is in, I wouldn't have this problem.

I'm not moving house just to get Stelara, so I asked the IBD nurse about going on Remicade or Humira instead. Yes, I've been on them before to no avail, but they may work better now my Crohn's is milder. Also, they're systemic and can potentially treat my uveitis as well. Haven't had her answer yet, so hopefully she'll reply tomorrow.

Anyway, my last two flex sigs have been excruciatingly painful. I don't get it. Had 5-6 colonoscopies (6 I think but not 100% sure) which weren't that bad. I even had twilight sedation for the second flex sig and it was still almost unbearably painful. If they are doing a balloon dilation I want the maximum amount of sedation and painkillers - just knock me out, literally.

Sorry I digressed a bit.

@Jake - Good luck with the Dr Rubin visit. I hope he is helpful.

@Gumby - I didn't realise you had several strictures - thought it was just one. That kind of makes me think that your doctors were fobbing you off even more than I already thought they were: IBS really is a bollocks excuse sometimes.

Gumby - the IBD nurse did answer, but it was a waste of time really. Just said that both she and my GI would be away next week. There's sometimes a postcode lottery aspect to getting expensive treatment on the NHS and with Stelara I've fallen victim to it. I've not been given a definite no yet, but Bucks have obviously insisted my GI try the balloon dilation first.

At the moment I'm more annoyed about Questran! Something that I thought would be simple to get a repeat prescription for is turning into a 'mare. On top of that, I tried to fill in the prescription the GP gave me to tide me over and couldn't do it: the pharmacist told me there was a national problem with Questran and that I would probably have problems everywhere. When I asked her if it was to do with Brexit she looked blank and said she didn't know.

Brilliant. I finally find something which really helps and I don't know if I will be able to get it in future. I will ask my aunt if you can get it OTC in Spain: she got me Maxidex and Levothyroxine, maybe she can get me Questran as well.

Ah okay. I just had the one, long stricture at the terminal ileum.

I meant fobbing you off with IBS. If you've got scar tissue and inflammation (negative biopsies or not), that definitely isn't IBS. But your docs don't seem to be considering any treatments. I agree surgery is probably overkill at this stage, but they could try a biologic or a balloon dilation to stretch the anastomosis. In a weird way, maybe my stingy county is doing me a favour by insisting I have a dilation first - if it makes eating certain foods easier and reduces the discomfort/pain, it will be worth it.