Share Facebook
Crohn's Disease Forum » Surgery » Strictures & Obstructions » Intestinal Blockage / Obstruction Support Group


 
09-04-2014, 08:26 PM   #301
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
Muppetgirl-I'm familiar with the balloon procedure like Daisy123 mentioned.Perhaps other crohnies will chime in.
__________________
"It does not do to dwell on dreams and forget to live."
09-05-2014, 07:32 PM   #302
Muppetgirl
Senior Member
 
Muppetgirl's Avatar
Can the balloon procedure be used for adhesion based blockages too?
09-05-2014, 10:53 PM   #303
fozheart
Senior Member
 
fozheart's Avatar
 
Join Date: Jul 2011
Location: Newport News, Virginia

My Support Groups:
Hi Muppetgirl,

Sorry to hear that you are having problems. I am wondering if they have done any tests, to help sort out if you do have new lesions or adhesions. Also, where are your obstruction... in relationship to your previous resection? I can only speak for myself when it comes to deciding whether or not to go in. In my case, they do not want to do more surgery, because I had 3 very close together, and also because I have other health problems. I think that part of the decision is whether or not your surgeon is aggressive or conservative too. Hmm... I cannot for the life of me figure out why there is not a good test that can detect adhesions and scar tissue, when there are such fancy ones that show everything else!

Oh... also, even if they go in and fix the adhesions, they will create new scar tissue by going in! Just a lot of things to be weighed.
09-06-2014, 06:31 PM   #304
Muppetgirl
Senior Member
 
Muppetgirl's Avatar
I totally agree. It can be so hard to find the right balance. I have also had multiple abdominal ops. I guess in the end I often make the decision based on my quality of life & it is really affecting me right now. Also had a few close calls where it temporarily blocked altogether & so I am frightened if I leave it, I will get carted in as an emergency. The situation in my pelvis is complicated due to gynae & uro disease too, so it's much better for it to be my team of specialists. They tried a colonoscopy but couldn't complete it. Scans don't show new lesions although smaller ones do not always show. I was thinking the exact same thing about adhesions and scans! Someone could make a lot of money designing a way to do that. I wonder if it's because they have no blood supply. How are you managing yours? Do you do the low firber diet?
09-06-2014, 10:42 PM   #305
fozheart
Senior Member
 
fozheart's Avatar
 
Join Date: Jul 2011
Location: Newport News, Virginia

My Support Groups:
Quality of Life...... doesn't that sound dreamlike?! Wow, you are going through a boatload of problems- the amount of pain you go through must be awful! Your decisions must be very complicated, so yes- that is when the quality of life vs. longevity and risk come into play. Do you have a good team of doctors? Besides the colonoscopy, have you had any other tests, like a barium enema? Also- have they tried treating your obstructions with steroids? (the way you respond would hopefully give them a clue whether the source is inflammatory or adhesion/scar tissue.

As for me, things just go around in circles- never really an answer to things. In general, I do a low residue diet, and when I have a really bad, painful obstruction/episode, I go to liquids immediately. Sometimes I will stay on them for 3 or 4 days. Recently I had a CT that showed new diverticula in my colon. To prevent diverticulitis, you need to be on a HIGH fiber diet. So... there is no right balance for me! (It is hard, because my resection was due to perforation in the sigmoid colon.)

I have kind of just accepted things for what they are, but YOU need to find some answers! Just keep on those doctors!
09-07-2014, 06:27 PM   #306
Muppetgirl
Senior Member
 
Muppetgirl's Avatar
Yeah, my quality isn't the quality I was used to before this started but I guess thats the case for a lot of us. The current bowel probs are threatening to take away what little I have. I still have daily pain but on some days its better than it was years ago. I have a good team, gynae used to be at the healm. These days its more my uro and CR consultants but they are all good at discussing things & good surgeons too. I've had MRI & CT. The CT was one of the new ones where you drink oral contrast first & they insert a tube that pumps Co2 into the bowel while you are in the scanner. It gives a 3D 'fly through' of the bowel. Haha thats what we all need - to fly through our bowels! I will ask about steroids. I'm not sure as endometriosis sets off an inflammatory response but I don't know its role in obstructions.

Gosh it must be so hard to go through it with your options limited in that way. How do you find the low residue diet? Do you have nutrition supplements alongside yours? I can see why your work colleague did your head in the other day! Oh no, its so unfair when you cannot win in that way. I really cannot stand the double binds our health/treatments leave us in sometimes. Are there any other treatments for diverticulitus? I'm so sorry it got to the point where you had a perforation. Will surgery ever be on the cards for you again?

Thank you for your support. Sending good wishes your way.
09-07-2014, 08:45 PM   #307
Daisy123
Senior Member
My understanding is that the double balloon Enteroscopy can go much further than the colonoscopy. It is similar to a pill cam but it can be used for therapeutic purposes. I have emailed my hospital to see how much it costs privately, not that I can afford it. I awake with pain again in the UK and it is now 3am.
09-07-2014, 09:32 PM   #308
fozheart
Senior Member
 
fozheart's Avatar
 
Join Date: Jul 2011
Location: Newport News, Virginia

My Support Groups:
I am sorry you are in so much pain, Daisy! I am sending good thoughts and prayers your way.

So Muppetgirl- I don't know much about endometriosis, or if it can cause obstructions. That is awful that you have that complication plus the uro disease. 2 years ago, the cancer gyne surgeon took everything out of me... (all the girl junk!), due to high cancer markers. I have to say that after the surgery recovery, it took a fair amount of abdominal pain away from me, which was good. (Left more room in there for things to move around!) UUhhh sigh.... I never even knew I had diverticulitis, until that surprise emergency! With the diet, I don't do anything fancy, and Ensure is my only extra. I can't afford much food, and certainly not supplements. There are hardly any fruit or veggies that are allowed, unless cooked really soft. Sometimes there is a surprise- a while ago my Aunt made a baked squash and gave me some. It was all pureed and tasted wonderful, with butter. It was a nightmare of pain- apparently high in fiber, and caused a lot of trapped gas. I feel like we are all in the same boat... very limited and in limbo! I am thankful that we have this forum to talk to each other.... thank you!

Oh... I never had the double balloon procedure, but I have had 2 flexsigmoidoscopies where balloons were put in to dialate a few narrowings in the colon. They worked good at first, but only for a certain amount of time. I tell people that the first balloon was yellow, and the second, pink! yea.... crazy!
09-08-2014, 06:15 PM   #309
Muppetgirl
Senior Member
 
Muppetgirl's Avatar
Sorry, I wasn't too sure of the role of inflammation in endo & obstructions. Endo lesions themselves definately can & do obstruct the bowel. Yeah its a bit of a free for all, five organs gone in their entirety, and sections of six others. Sorry you went through a mass organ walk out too. The diet is such a pain isn't it. Oh no, squash incident sounds a nightmare & for some reason I thought squash was ok ...oops! I was craving fruit over the weekend so gave in to a couple of spoofuls of fruit compote (hoped the cooking would break down the firbres). Yes its nice to know we're not alone. Everybody's so helpful & knowledgeble.

Daisy...thanks for sharing the info. So sorry you are in so much pain & being kept awake by it. Hope today/tonight was an improvement.

Wishing everyone a better blocked week than the last!
09-19-2014, 09:20 AM   #310
Daisy123
Senior Member
Thanks for all the support. Quick update. IBD nurse rang yesterday to say that my GI had presented my case during a case conference or something to that effect. I presume my surgeon would have been there. So now, at long last, they are doing something and I am scheduled for a barium follow through to see whether the strictures in my distal ileum are inflammatory or scar tissue. I am just waiting to hear but so relieved. Hopeful that either I can have dilation or go onto Remicade depending in the results. This came after a horrific couple of days of diarrehea and pain which kept me up all night and made me miss a work induction. I have been using mindfulness which has been really helpful, but so relieved.
09-20-2014, 07:04 AM   #311
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
Hopefully the sbft will provide some answers.
09-20-2014, 08:47 AM   #312
Justanothercp
Senior Member
 
Justanothercp's Avatar
 
Join Date: Aug 2013
Location: Sacramento

My Support Groups:
Good luck Daisy. Keep us posted.
09-26-2014, 01:18 AM   #313
bunnygirl
 
bunnygirl's Avatar
 
Join Date: Sep 2014
Location: San Luis Obispo, California

My Support Groups:
Hi all! I'm new to the forum and still newish to Crohn's. Surprise diagnosis during diagnostic laparoscopic surgery (and resection of 11" of SB) following 2 years of "episodes". Hospitalized 2 times (1 week each) for SBO. Got a patency capsule stuck yesterday, ouch. Hopefully it will dissolve in the next couple of days. Surgeon who did resection said my jejunum was a patchwork of damage, so he removed what looked like the main blockage. Now, 3 months later, I'm still on liquid diet and still blowing up like a balloon and having pain when I eat. 3 Gastro docs say I should be on Remicade. Insurance company denied it as I have not "failed" steroids, immunosuppressors, etc. Has anyone else dealt with this? Do I need to take these drugs?? I'm losing ground, but docs seem baffled. BTW, is this a new thread? Help!
09-26-2014, 04:07 AM   #314
Daisy123
Senior Member
Hi Bunnygirl. It is different in the UK where I am from, but I haven't managed to try Remicade yet, it depends what is causing my strictures. Blowing up like a balloon sucks. If the stricture is scar tissue then medication won't help and there is the possibility that biologics could make it worse. Sorry you are having such a hard time.
09-26-2014, 01:21 PM   #315
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
Welcome bunnygirl

I had a resection in my jejunum as well.I am on Remicade,but for fistulas.I was taking Pentasa after the resection.

Are you seeing specialists? GI,colorectal surgeon rather than a GP,for example.
09-26-2014, 04:56 PM   #316
bunnygirl
 
bunnygirl's Avatar
 
Join Date: Sep 2014
Location: San Luis Obispo, California

My Support Groups:
Thanks for the replies! I have been on Pentasa since surgery (6/2/14), but haven't seen much (any?) improvement. I am seeing gastro docs, plus the folks at IBD research center. I haven't presented with any "usual" crohn's symptoms. No diarrhea, etc., just the SBOs. I have other autoimmune issues - Hashimoto's Sjogren's, etc., but they are pretty minor. All the other tests (CT enterography, x-ray, etc.) have been normalish, just some thickening of SB. Since the option of the pill camera is now gone (again), the only other option , to see/assess/monitor the damage seems to be the double balloon endoscopy, but that seems pretty risky given the strictures. Have any of you had the procedure??
09-26-2014, 11:09 PM   #317
syzygy
Senior Member
 
Join Date: Sep 2014
Location: Northampton, Massachusetts

My Support Groups:
I also had primarily SBO's and few other symptoms, but doc is recommending Remicade based on imaging showing expanded inflammation and the atart of a possible fistula.

Have they done a MR enterography to try to image the inflammation? What about blood markers of inflammation (e.g., CRP)?
__________________
Intermittent SBOs starting in 2005
Diagnosed 2013
Started Remicade October 2014
09-27-2014, 02:43 AM   #318
Daisy123
Senior Member
The double balloon Enteroscopy has been mentioned to me, but I have to have a SBFT first. I have had lots of dilations under ordinary scopes, and it seems this is no more dangerous.
09-27-2014, 05:37 PM   #319
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
I have had a recent SBFT. I have not had the double balloon enteroscopy.I had to look it up to familiarize myself with it.I would definitely choose to be put under for it.

What did the docs say about the scope and your strictures when they brought the procedure up to you?
09-28-2014, 07:24 AM   #320
Daisy123
Senior Member
They said they couldn't reach the strictures with an ordinary scope. I had a sigmoidoscopy which I was told was almost a colonoscopy because of how far they went during it. I have multiple strictures in my distal ileum, which they are now not sure are inflammatory or scar tissue. It was brought up at my last GI appointment when I again asked about dilation, but I was told that special funding would have to be applied for. I go to St Marks in the UK where they do it. So hopefully after the SBFT we can get something done.
09-28-2014, 06:04 PM   #321
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
They said they couldn't reach the strictures with an ordinary scope. I had a sigmoidoscopy which I was told was almost a colonoscopy because of how far they went during it. I have multiple strictures in my distal ileum, which they are now not sure are inflammatory or scar tissue. It was brought up at my last GI appointment when I again asked about dilation, but I was told that special funding would have to be applied for. I go to St Marks in the UK where they do it. So hopefully after the SBFT we can get something done.
The SBFT is a step in the right direction.My SBFT was an all day affair ,but they got good images and,really...what choice did I have.The dye wasn't that bad tasting,much better than the colonoscopy 'brew'.

Hopefully yours will be done in a timely manner...I think I have pokey guts. Good luck!
09-29-2014, 10:03 AM   #322
Dixiedoll23
 
Join Date: May 2011
Location: Sanford, North Carolina

My Support Groups:
After years and years of me telling every doctor I saw that SOMETHING was wrong and I go to the bathroom 20+ times a day, I'd always get the same response.Just take some fiber, and you'll be alright.I'm over weight, I have been all my life.I think that's why the doctors never took me seriously or suspected I could have crohns.They have a mental imagine of a slim, sickly looking person in their head, and I just don't look like that.I even told them I was pushing 300 pounds at one point in my life, and have lost almost 100 of that.Despite eating healthy, small meals, going to the bathroom constantly, and always on the move, I will never see 199 on the scale.I'm always just right there at 201/202.
After my 5th boy, a mid-wife finally decided to write me a referral to see a GI doc.His first response was I'm sure you don't have crohns but we'll check to make sure.
All of the tests were coming back positive.The last one they did was the camera pill, and I remember the nurse saying there was a 1 percent chance it could become stuck.Well it did, and I was off to emergency surgery and had 13 inches of small bowel removed.The GI doc went straight to the big dogs ad started me off on Humira.I've since failed that and have also failed Remicade recently, too.
Soo, now I'm pretty much in the same boat.Last month I was admitted to the ER after severe pain and puking.I told the doc there this felt like a blockage because I had one before.She didn't say anything at all about a blockage after the CT scan, just some inflammation.I wasn't in a very good hospital and seen no specialists the whole time.After pain meds and prednisone I was sent home after a few days.I made a follow apt with my new GI and he decided to do a scope.He could not perform the scope because he said he couldn't get it through I was so blocked due to a stricture.
Looks like I will have to have surgery again, but he said I was too young (33).I don't see another option though.There are no meds for me to take.The only thing keeping the blockage under control right now is the pred and I can't stay on that forever.My anxiety from all of this is out of control.I have a feeling they'll have to take more than they did last time for some reason.I have a GI apt tomorrow, and I hope I can get some answers.I am absolutely miserable.My food won't go anywhere.I feel like I'm 9 months pregnant all the time and the pain is un-bearable at times.
I'll keep everyone updated if I find out anything.
xo
__________________
Dx with Crohns disease in 2010.Have been dealing with symptoms since 1999.
I was the 1 percent chance of the camera pill getting stuck, so off to emergency bowel resection surgery in July of 2010/removed 13 inches.

Currently dealing with another obstruction.Don't know what the plan is yet.Surgery or? I don't know of any other options....
My Meds;
Prednisone 20mg
Vitamin D (50,000 units)
Tramadol 50 mg
Butran patch 15 mcg
Imuran
Gabapentin
09-30-2014, 08:40 PM   #323
syzygy
Senior Member
 
Join Date: Sep 2014
Location: Northampton, Massachusetts

My Support Groups:
I got my insurance authorization in the mail today, so looks like I am indeed joining "the club." It was a good sign to me that I felt relief at seeing the letter. (I'd previously been pretty apprehensive about starting a med with such potentially serious side-effects.) Once I get a date, I'll be scouring the forums and picking people's brains about tips for the hospital.
10-01-2014, 02:25 AM   #324
Daisy123
Senior Member
I got my insurance authorization in the mail today, so looks like I am indeed joining "the club." It was a good sign to me that I felt relief at seeing the letter. (I'd previously been pretty apprehensive about starting a med with such potentially serious side-effects.) Once I get a date, I'll be scouring the forums and picking people's brains about tips for the hospital.
Good news. Hope it gets things under control!
10-01-2014, 09:51 AM   #325
syzygy
Senior Member
 
Join Date: Sep 2014
Location: Northampton, Massachusetts

My Support Groups:
Got my date for the first infusion: 10/17.

Still feeling relieved. Thanks for the support everyone.
10-03-2014, 05:22 AM   #326
gemling
Senior Member
 
Join Date: May 2014
Location: United Kingdom

My Support Groups:
Glad you have a date, syzygy! Let us know how it goes. I had my first Remicade/Infliximab infusion yesterday. All went fine and still feel fine today. Just a bit tired, but when do I not feel a bit tired?
__________________
Diagnosed May 2014
Jul 2014 Blockage caused by flare up
Sept 2014 Finished 3 Weeks of EEN. Started LOFFLEX diet
Mid-Sept 2014 Another blockage
Oct 2014 Started Infliximab


Current Medications:
Infliximab Infusions (Remicade), Loading doses
Azathioprine (100mg)
Pentasa (4g)
Supplements:
Adcal-D3 (1g)
Ferrous Fumarate (420mg)
Multivitamin
10-03-2014, 06:57 AM   #327
Dixiedoll23
 
Join Date: May 2011
Location: Sanford, North Carolina

My Support Groups:
After I saw my GI earlier this week, he decided to write a referral for me to see another GI and GI surgeon at University of North Carolina.So, I'll probably have a surgery date soon.I'm dreading the surgery, but at the same time feel relieved.I'm so miserable.I feel like I'm 9 months pregnant and in terrible pain all the time.This surgery took me forever to recouperate from! I had 13 inches removed last time, and I just have a bad feeling they will have to take out more.I've left my severe crohns un-treated now for over 10 months.Medications failed.Hopefully this will put me in remission finally and I can quit smoking!!
10-03-2014, 07:00 AM   #328
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
Hi Dixiedoll, I hope it brings great relief.
__________________
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
10-03-2014, 07:19 AM   #329
gemling
Senior Member
 
Join Date: May 2014
Location: United Kingdom

My Support Groups:
Hope you get seen soon Dixiedoll and that the surgery helps improve your quality of life. I know you've said medications failed, but have you heard about/discussed Entyvio? It's a new drug that targets the gut. Might be worth mentioning/asking about for the future if needed.
10-03-2014, 07:29 AM   #330
Daisy123
Senior Member
Hi Dixiedoll, sorry that you are facing more. I have had six resections, and still have enough bowel to function (I have to take meds to firm things). I stopped smoking before my last one, they refused to operate otherwise. Switched to e-cigs, still n them but much healthier than before. Let us know how your appointment with the surgeon goes.
Reply

Crohn's Disease Forum » Surgery » Strictures & Obstructions » Intestinal Blockage / Obstruction Support Group
Thread Tools


All times are GMT -5. The time now is 09:37 AM.
Copyright 2006-2017 Crohnsforum.com