Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Non-Crohn's Bowel Obstruction

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 3/4/2019 3:17 PM (GMT -7)
Hey there gang,
I haven't posted in awhile and hope everyone is doing ok. I've been in remission with my Crohn's since my ileo-colic resection in 2014, although I constantly struggle with IBS . I just had a colonoscopy and CT in January which were both good. I ate some raw carrots on Sunday and ended out with a full out obstruction. The new CT is showing a lot of dilated bowel in my small intestine and possible impacted stool at my anastomosis site. So I'm in the hospital on clear liquids. They just added laxatives today to try to get it to pass, and hopefully I'll avoid surgery. They still think I'm in remission, but it just got backed up at the surgery anastomosis site. I did eat some raw carrots because I thought after my last clear colonoscopy and CT just three weeks ago that I was fine. I guess I'm back to low residue diet even in remission. Now I'm wondering if some of my "bad IBS" pain is actually partial obstructions. It's really depressing. I guess I can run but I can't hide....this disease keeps following!
profile picture
73monte
Veteran Member
Joined : Mar 2007
Posts : 2235
Posted 3/4/2019 3:41 PM (GMT -7)
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.
profile picture
juliet
Regular Member
Joined : Aug 2006
Posts : 125
Posted 3/4/2019 3:45 PM (GMT -7)
Gumby44,

So sorry to hear that you’re in the hospital. It’s a shame that something small like a raw veggie caused so much trouble, but alas, that can be the life with Crohn’s disease. I’ll root for you to get the “all clear” so to speak very soon so you can head out of the hospital.

I’m in the middle of some lovely Miralax cocktails myself in preparation for tonorrow’s surgery. I, too, have a non-Crohn’s obstruction, just due to adhesions.

Here’s hoping we both have better days soon!

-Juliet
profile picture
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 3/4/2019 6:09 PM (GMT -7)
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 :-/
profile picture
gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 3/4/2019 8:43 PM (GMT -7)
Thanks everyone!
At my colonoscopy in January my GI said the surgery site was a bit inflamed but didn't mention a stricture and all the biopsies were normal.( I still want to know why it was inflamed but he said "most surgery sites look like that" but that didn't make a whole lot of sense to me since it's been over 4 yrs since I had the surgery.) I asked the surgeons the same question about a stricture. They said there is probably some scar tissue but they are hopeful this will all pass and I won't need any surgery. If it happens again, I suspect they will want to stretch it or do something. Meanwhile, it's going to make me nervous to eat fresh fruits and veggies and I love them, so that's a minor loss, but still irritating.
Juliet---good luck with your surgery tomorrow. What exactly are they doing in surgery? Was this a planned surgery or did you have an obstruction too?
NCOT...I am so sorry you are depressed and having such a hard time. I'm feeling really sad too right now, so I don't know that I have much advice. I try so hard to live my life and ignore the relentless bowel issues, but it has a way of chasing me down, and I don't even have bad disease! The obstruction was crazy painful....I get a little more traumatized each time these things happen.
profile picture
juliet
Regular Member
Joined : Aug 2006
Posts : 125
Posted 3/5/2019 4:24 AM (GMT -7)
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.
profile picture
gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 3/5/2019 7:26 AM (GMT -7)
Wow Juliet! That sounds horrible! I hope surgery helps.

It looks like I'm going home today and staying on a low fiber diet. I am suspecting that my numerous bouts of "bad IBS" pain that sometimes lasts hours are actually partial obstructions. If I get another obstruction then they will consider going in and trying to dilate the surgery site, but hopefully it won't come to that.

I guess the learning for me here is that I have kind of gotten used to dealing with so much ongoing pain that I just accept as something I have to live with, so it's hard to differentiate when something is actually fixable or wrong. I think it's a Crohnnie thing honestly. Anyway, thanks for all the support. Hopefully I can stay out of trouble for awhile.
profile picture
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 3/5/2019 8:26 AM (GMT -7)
@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 :-/
profile picture
gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 3/5/2019 9:42 AM (GMT -7)
No you haven't made me more depressed. But I suspect you are right that it might be active Crohn's at the surgery site only I can't prove it and I'm not on any maintenance meds. I really hate the idea of getting a second opinion back at U of Chicago because it's a giant hassle, and although the Crohn's expert there is very smart, he is also a big egotist and I'm too tired to deal with him. Maybe I'll just let this ride a bit and see what happens next. I'm definitely staying very low residue/ fiber though. Thanks for your insight. I always appreciate it. It makes me feel validated rather than neurotically crazy!
profile picture
JakeB
Regular Member
Joined : Dec 2008
Posts : 164
Posted 3/5/2019 11:49 AM (GMT -7)
@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.
profile picture
gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 3/5/2019 12:08 PM (GMT -7)
Hi Jake,
U of Chicago has a great reputation. I saw Dr. David Rubin. He helped me decide to have surgery when I had several strictures and a partial bowel obstruction. He is very smart and hopefully whoever you see over there will be able to help. I'm from northern Michigan so it is very hard for me to go see him. You might want a surgery consultation too because it's the surgeons that really deal with adhesions and scar tissue where the GI's manage the disease part of things
profile picture
gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 3/5/2019 3:17 PM (GMT -7)
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??
profile picture
JakeB
Regular Member
Joined : Dec 2008
Posts : 164
Posted 3/5/2019 8:31 PM (GMT -7)
Hi Gumby...

A couple things. Dr. Rubin is who I am seeing, so it will be interesting to see what he says! My case has been a difficult one for the 20 years I have had it (30 now, so 2/3rds of my life).

What docs have told me before is that it could be spillover D, which can happen with constipation issues. I have had a lot of that issue, and get constipated even with 4 stools a day. Thus why I need to take MOM no matter what after lunch... to make sure I keep things moving. I probably look bloated half the time everyday.

I wouldn't necessarily stay off solids unless you really can't tolerate them. Add in milk of magnesia or miralax midday like I have and see if that helps some. It has for me.

Hope this helps a bit!! Take care and you are in my prayers!

Jacob
profile picture
HabsHockeyFan
Veteran Member
Joined : Jan 2006
Posts : 3240
Posted 3/6/2019 5:57 AM (GMT -7)
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!
profile picture
gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 3/6/2019 12:57 PM (GMT -7)
Jake---I'm glad you are seeing Dr. Rubin and I'm curious to hear how your visit goes. He is very smart, and very thorough so I hope he has some answers for you. I have similar problems to you where I feel constipated but then when I go it is often diarrhea. I was using Senokot, but I think I'm going to combine it now with Miralax.

Habs....it is always nice to hear from you and I'd love to hear an update as to how you are doing. I think I'm just feeling a little traumatized at the moment. I was eating a much bigger variety of foods.... 7 grain bread, small salads, cooked broccoli, apples, nuts, but I think I'm walking all of that back now. Looking back, I suspect what I defined as bad IBS may have been partial obstructions and I just wasn't recognizing it. I'm still feeling pretty awful today--not obstructed, but bloated, exhausted and weak. They told me I can go right back to work, but I'm self employed and my boss (me) says I should take the week off smile I was just about to audition for another play, but now I'm thinking maybe not, but we'll see how I feel over the next few days. Hope all is well with you!
profile picture
JakeB
Regular Member
Joined : Dec 2008
Posts : 164
Posted 3/6/2019 3:36 PM (GMT -7)
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)

profile picture
gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 3/6/2019 7:22 PM (GMT -7)
Jake, Good luck with everything and I'm glad you are getting better. I'll watch for your posts!
profile picture
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 3/7/2019 8:17 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.
profile picture
gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 3/9/2019 2:49 PM (GMT -7)
NCOT- The thought of a flex sig seems painful. I'm so sorry that after all you have been through that you can's straight up get Stelara. It's amazing actually! I hope you can get the energy to argue your point, but I know that gets exhausting after awhile.

BTW, It was one long and one short stricture that I had before surgery. I don't feel like my doctors are fobbing me off. I am having trouble introducing food after coming home from the hospital, so my GI squeezed me in at his office and sent me for an x-ray. He really thinks it is probably scar tissue at the anastomosis site combined with my carrot intake that caused the obstruction. He doesn't think it warrants seeing the surgeon at this point unless it continues to happen. All of my blood work and biopsies were ok, so there isn't a whole lot indicating a Crohn's flare vs scar tissue/adhesions. I am really having trouble advancing my diet without feeling nauseous or bloated though, and it's starting to concern me. I missed the whole week of work and now I have double the amount of work for next week so I'm kind of dreading it. We'll see how I do. Up until now, I've had challenging GI days, but have been ok for the most part. I don't look forward to getting back on the roller coaster of Crohn's again!
profile picture
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 3/9/2019 7:38 PM (GMT -7)
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.
profile picture
HabsHockeyFan
Veteran Member
Joined : Jan 2006
Posts : 3240
Posted 3/11/2019 5:57 AM (GMT -7)
Hey Gumby....sounds like you and carrots have the same relationship that I have with them! It is at my 28+ year ago surgical site where they cause me issues also. You might have to go down the food diary process again now that you are post surg. I know that carrots, broccoli, seeds, popcorn, and potato skins are on my forever banned list in my "food diary in my head". There are a few other things that are on my "ONLY on my very best days when I will be home for a long time after" food list. But, I wanted to assure you (or give you as much comfort as I can) that there are many foods I eat that are no-nos, but they work in small amounts. Keep trying. Heck, I just ate beef on a cruise---and I never thought that would happen! I eat salad (I crave it for some reason)---but only a few forkfuls. I love onion rings, but I eat only three and only if I know a bathroom is handy.
Try the smaller amount idea...it has really helped me expand my food list.

As for your question on how I am doing....things are good. New job 01/2017 helped a lot-I work from home which is lonely, but does have great bathroom privileges! I "divorced" my siblings and now have a birthday card relationship with them...that took a lot more of the stress away. Mostly, I am healthy..some lower back pain that is puzzling me, the normal amount of gut pain for me, a lot of arthritis, and the never ending tag issues. It is all pretty normal for my life. I'm not getting as many baking orders as I used to and I miss that, but I am dabbling in a few other projects. Mostly, I am waiting for spring when the CD seems to get better and I can get out in the garden on my lunch time! We even bought bicycles last summer---yes you can forget how to ride a bike when you are my age--and I am determined to get more weight off somehow!

TakeCare!
✚ New Topic ✚ Reply




HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
FacebookFacebook TwitterTwitter PinterestPinterest LinkedInLinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.