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


 
10-31-2012, 06:55 PM   #61
Ihurt
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Oh my gosh Kellix, that sounds awful what you went through. It is really scary. I worry about myself being is so much pain all the time. I still have not had a diagnosis, but I suffer everyday. I just had a test (MRE) to see my small bowel. I dont have have the results yet. I am afraid that I am going to end up with damage. I know I am all inflammed througout my intestines, I can feel it!

How does a doctor know if you need surgery or not?? I mean I myself would not have any surgeon cut me up unless it was like an absolute last resort. But how do you know when surgery is the only thing that will help? I am terrified of surgery as my last Gastro doc told me some horrible stories about having any type of gastric surgery. I remember I was contemplating having a lap done to see why I was having upper gut issues a few years back and he said you never want to have any abdominal surgery unless you are dying. So I will admit, it is a huge fear for me. I hope I can get answers to what is wrong with me soon...

And yes, there are A lot of crappy doctors out there, that is for sure. Sorry you went through that with your First GI doc. That is crazy. He should have his med license pulled!
10-31-2012, 08:29 PM   #62
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IHURT, I just had back surgery done then 3 months later I had the obstruction, they thought, I had gallstones, also you have to remember this was from the crappy GI doc. on the 4th month. I had my gallbladder removed. Which in hindsite if I fired him and got that Gastro surgeon. I probably still would have my gallbladder. But he made me wait 6 months, also I had back pain and the big D multi times of the day. You could just tell looking at my colonoscopy, it was not right.

I had the surgeon that removed my gallbladder look at it and he said too, you have Crohns, that and if had known would have done the surgery then. But he said, my GI surgeon was the best in the business. You just have to be at the point I don't want to keep living like this. Trust me the first GI doctor, I thought about sueing I had put multi bad reviews about him all over the place. The guy just seemed like, his father was a doctor and his father was a doctor, like he HAD to become a doctor, but you could tell he didn't like doing it.

I mean, I had the talk about Humira, and the other new drugs, but my surgeon was like its not going to help you, and also you probably have had crohns for 20 years and just didn't know about it. I read this thing, that basically said most people find out they have crohns, in their teens to twenties, but sometimes if they have their appendix removed, that it doesn't show up till their 40s. I had my appendix removed when I was 21.

I have other friends that have Crohns and I hear ya, I at times wonder if it was the right idea, and just trying the drugs to see, if it would have helped. because I have gone thru the ringer because of it.

But you have to make that decision and get multi-doctors to look at it, why I wanted the 2nd opinion. And so far I have felt better, but I have had a ton of health problems since. My friend said it perfectly, you have to do it, when you can't stand it anymore. But just make sure you have the best doctor you can get. Like look at reviews. Take care
11-01-2012, 01:53 AM   #63
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Yes Kellix, I too get inflammation from certain antibiotics. Catch 22 when you get sick isnt it? I try to inform my GP which ones do a number on me.

Hope you feel better very soon!
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11-01-2012, 08:45 AM   #64
Ihurt
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Hey Kellix,

Geez, I am sorry you had to deal with an idiot doctor like that. Unfortunately, there are a lot of idiot doctors out there, I have seen my own fair share!

That is so odd about your gallbladder surgery and getting dx with crohns afterwards. My regular primary care doctor, well her sister has crohns. She said her sister got it right after she had gallbladder surgery. I wonder if there is a connection to that..

This is such a scary disease. I also have other health issues as well that complicate things drastically for me. I have IC ( interstitial cystitis) which is a debilitating bladder disease. It makes me very prone to getting UTI's. I also am allergic or have really bad side effects to ALL antibitoics. Right now I have been on one (kefelx) low dose for over 5 years to prevent the UTI's I was getting. It was a life saver for me, but I am 100% certain that this antibiotic is what has caused all my gut issues. I had an MRE of my small bowel last week and am suffering for it now. I got a UTI due to the diarhea that the test caused( drinking that crap). Now I have had to up my antibiotic that I am on and it is doing a nasty number on my gut...

Anyhow, I am sorry you went through all that, nobody should have to endure all that
01-02-2013, 12:59 AM   #65
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I had surgery to remove my colon in 1994 and starting getting bowel obstructions in roughly 2001 from scar tissue (adhesions). At first they were just really bad cramps lasting a couple of hours but progresses quickly. They often lasted 12-16 hours and were extremely painful. Sometimes I would ride it out at home but often ended up in emerge for help, mainly for the pain. Buscopan and gravol was like a magic switch. I only had an NG tube inserted once in 2009 and that seemed pretty effective too.

How painful were they? I adjust my pain scale many times over the years until my final obstruction in 2009. Prior to having UC I ripped off my big toe nail completely once. I thought that hurt pretty bad at the time. Now that wouldn't hit 1 on my scale.

At their worst I would pass out between bouts of extreme pain, only to wake up again when the next wave came.

I sometimes get cluster headaches and really bad tension headaches. Neither come close to bowel obstructions, for me at least.

I had surgery in 2009 to remove adhesions and haven't had a blockage since then. I know they will likely start again some day but for now I am pain free.
01-19-2013, 02:36 AM   #66
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I had a blockage so bad that the biggest thing that could fit through my small intestine had to have the diameter of a straw.
As described above, one day, an excruciating amount of pain just hit me. It came in waves, but the moments where it wasn't at its peak of pain were still extremely intolerable.
It feels as if a knife is inside your intestine, moving around and cutting everything up inside. It is easily the worst pain I have ever experienced in my life. On a scale of 1-10, easily a 10, some days an 11.
01-19-2013, 12:54 PM   #67
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I had a blockage so bad that the biggest thing that could fit through my small intestine had to have the diameter of a straw.
As described above, one day, an excruciating amount of pain just hit me. It came in waves, but the moments where it wasn't at its peak of pain were still extremely intolerable.
It feels as if a knife is inside your intestine, moving around and cutting everything up inside. It is easily the worst pain I have ever experienced in my life. On a scale of 1-10, easily a 10, some days an 11.
That is pretty much exactly my description. I have adjusted my pain scale down so many times ripping off my big toenail (which I have done twice) would be less than 1. It's not just about peak pain though. My last one was 42 hours at 10-8-10-8........
05-01-2013, 10:48 PM   #68
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I'm bumping this thread up as the issue seems to be popping up a lot on the forum lately.
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05-06-2013, 08:27 AM   #69
Paddy Holmes
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I've had 3 blockages and I agree with all the comments above. I've had a LOT of abdominal surgery so I've got adhesions all over the place. They say That I have an adhesion working it's way into the ileum( I have an Ileostomy)so the smallest thing can cause a partial obstruction.I've been told there will be no further surgery because of the adhesions, so I cope as well as I can if things start to slow down. I try to compress the point on my stomach that has gone rock hard but I'm not sure this is a good idea. I find that following a blockage I pass a lot of anal mucus which is usually an indication that it's all over.
Don't leave it too long, is my advice. If the pains come like contractions, get to A&E. In my experience (and I've been advised to do this), call an ambulance. They can get a line in and give you pain relief which won't be available if you present yourself at hospital. Time is of the essence in my experience.Once they have a line in they can give you morphine followed by IV paracetomol which is surprisingly helpful.
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05-06-2013, 04:50 PM   #70
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I've had two obstructions, the second in July 2011 led to the investigations that ultimately resulted in me having a right hemi-colectomy. The obstruction occurred while I was on holiday in Portugal, but I had been unwell for a number of weeks in the run up to the holiday. I had been suffering with the usual symptoms of a flare; fatigue, relentless diarrhoea, headaches and was concerned that things were getting worse.

On the day the obstruction started, I had been out on a bike ride and felt very hot, sick and weak. It was a very hot day, about 32C and I nearly fainted. I lay down in an a cool air conditioned bedroom, drank some water and then the gripping pain began. For the next 48 hours, I managed to eat nothing and vomited repeatedly. Sleeping was a struggle as I was constantly tossing and turning with the pain. On a scale from 1 to 10, I would say it was a 6 or 7, because I could get out of bed and walk to the bathroom to be sick when needed (coming round after surgery was a 9 by comparison, I shouted out in pain uncontrollably). I was also aware that there was a major problem because all bowel noise (gurgling, etc.) stopped and despite the crampy pain, I could not pass wind.

I think the first thing I managed to eat and hold down was a banana. The pain gradually eased off and things started moving through me again. The following day, I flew home to London and the day after I went to the hospital and was immediately referred for an emergency MRI scan. I never really felt right again after that until months later when I had the surgery in March 2012.
05-08-2013, 12:49 PM   #71
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Hi to all! I'm new, just posted my story. I can relate to the pain coming in waves, building then lessening to do it over and over again. Its the same way with ulcers.
Does anyone have problems passing wind? It seems when I am hurting that I have to really force the wind to pass which takes a lot strength. I don't know how else to word this appropriately. lol.

Thanks to everyone for helping others with your stories. I finally feel like I can actually ask these questions and talk to those who understand.
05-08-2013, 06:41 PM   #72
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I've had trouble passing wind when I got blocked in the butt which I guess was the scar tissue simply shrunk to where I couldn't go anymore. But the blockages up higher, maybe the anastomosis site, were different and far mare painful.

I just had my butt end dilated in January and can eat more or less normally again. For a while it was chicken soup.


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05-09-2013, 01:26 PM   #73
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canuckscouter,

Thanks for your reply. You must be the type that is plagued by scar tissue, just as I am. When I had my gall bladder out and hysterectomy, the ovaries and gall bladder were collapsed and encased with scar tissue. I'm glad you got it taken care of and can now eat normally. I had the barium test today and am waiting for the results. It took much longer than I ever thought, 4 hrs, and was painful as it made its way through the small and large intestines. It took quite sometime to go from the end of the small into the large. My guess...scar tissue.
I've already had a section of my large bowel removed along with my appendix cause it was attached to that section. The bowel was necrotic.
I'm wishing you the best and thanks again for the reply!
Lynn
05-09-2013, 01:41 PM   #74
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Aww get well soon Lynn :-(
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05-09-2013, 02:20 PM   #75
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LynnMarie,

I wish your all the best as well.

You are right that scar tissue from surgery was the problem. For me though it was a total blockage when it happened. I remember once when I went to emergency for relief they tried to do a barium follow through. It came up faster than it went down.

For now at least I'm free from that problem but it is predicted to return.

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05-09-2013, 02:52 PM   #76
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Dilating the stricture is only temporary unfortunately.
05-15-2013, 11:27 PM   #77
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It was the worst pain of my life by far. The pain was at a10. I had 6 ER trips in 2 months. I was afraid to eat. I don't remember having the vomiting at that time, but later I had incidents where I threw up whatever I just ate.

Pain came in waves. It was relentless.
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05-16-2013, 12:38 AM   #78
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This is info I will NOT be sharing with my son. I feel for all of you! I actually thought natural childbirth hurt A LOT. MUCH more than my c-sections, including recovery.
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05-18-2013, 04:40 PM   #79
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After reading this thread I am convinced that I've had at least one partial blockage a few weeks ago, intense cramping pain that was definitely worse than labour a and I was in labour for five weeks (labour started at twenty-five weeks but delivery was held off until thirty weeks), I couldn't stop shaking and had cold sweats and couldn't stop running to the loo but it took a lot of effort to have a bowel movement. The pain did pass and then I was left feeling really drained for the or four days. Still haven't got over it though. Since then I have been having random stabbing pains in my LRQ, I never know when to expect them but when they come they take the legs from under me, I ended up on the floor the other morning cos of it.
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06-08-2013, 08:00 PM   #80
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I've been having blockages for over a year now, but it's only very recently that I discovered that I had Crohn's disease and a pretty severe stricture due to this. I thought I was just having severe flus at first, but they started coming more and more frequently (every two weeks or so at the peak, before I started on medication). It starts out as pain right below the V in my ribcage, then moves lower, and I begin to have very severe pressure and pain for about 10 seconds or so, followed by a large gurgle and then partial relief. This cycle starts back up after about a minute and this culminates in vomiting that can last up to a day and a half and turns green once I have thrown up everything I have ever eaten . During this time I can't even drink water, and on the rare occasions I can take medication without throwing it up right away, there is no cure for the pain and vomiting.
Once I have diarrhea I know that this cycle is starting to wind down. Never thought I'd be looking forward to diarrhea.

I started Prednisone (30 mg at first tapering off) which does not seem to have helped my stricture, I had an MRI recently and my doctor says that it is 4 cm long but almost completely closed, I am back on a higher dose of Prednisone (40 mg) as well as Imuran... If this doesn't work then ballon dillation will be the next step, and if that fails, resection which I am trying to avoid at all costs.

I'ver never been to the ER but I think that maybe next time I have a blockage I will.

Anyone found anything to take away (or even dull) the pain?
06-08-2013, 10:50 PM   #81
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Hi Monkeyhugger. When I dealt with mine I went to the ER and was given pain meds there along with much needed fluids. Other than that you could try a heating pad and warm baths (assuming you don't want actual pain medication) along with eating smaller meals more frequently throughout the day (soft foods and avoid fiber) and you could also try a liquid diet as well. Let your doctor know that you're going to go on a liquid diet if you do and make sure that you get plenty of nutrients. There are supplement drinks out there yet you can also make your own soups and drink the broth.
06-20-2013, 05:42 AM   #82
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For me I was blocked up a lot. Very constipated. I could go over a month at a time without going to the toilet and it just made me miserable because I felt bloated a lot. The worst part of it all was the pain for sure. It was agony and this is what I remember most vividly before I had surgery. I was admitted to hospital on a few occasions just to be given weak laxatives and morphine for the pain. I had fevers a lot during the time I had obstruction, constantly pooled in sweat at night which also made me miserable because it smelled sickly.
07-15-2013, 10:59 AM   #83
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I was wondering if anyone that had the partial obstructions, had blood test done. If so, did they show that you were having an obstruction. For the past yr and a half, I have been hurting so bad, I've lost weight and I cant eat anything because as soon as I have a couple of bites, my stomach is killing me. I talked to my GI and he told me that since my blood test is showing NO signs that my crohns is active, then he just can sugest gas x, to help me pass gas. My stomach is bloated and it hurts so much. I am so weak because I'm not eating....any help would be great
Thanks
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07-15-2013, 12:08 PM   #84
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When I had a partial obstruction. My white count was high
And some other minor things just barely out of range.
The pain was so bad I couldn't stand up straight and everything went through me. I don't recall if I was bloated. Just the pain and my blood pressure was low.
If you feel that bad go to the er. That's what I had
To do . I felt like I was gonna pass out and was home alone
With my kids. Hubby made me go. Feel better listen to your body
07-15-2013, 06:12 PM   #85
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I hate to say but I've had about 30 of them. Off the chart pain. I don't mess around anymore. Off to the ER for didaudid and a potent antinausea medication. Most cleared but a number have required surgery.
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07-15-2013, 11:32 PM   #86
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I was wondering if anyone that had the partial obstructions, had blood test done. If so, did they show that you were having an obstruction. For the past yr and a half, I have been hurting so bad, I've lost weight and I cant eat anything because as soon as I have a couple of bites, my stomach is killing me. I talked to my GI and he told me that since my blood test is showing NO signs that my crohns is active, then he just can sugest gas x, to help me pass gas. My stomach is bloated and it hurts so much. I am so weak because I'm not eating....any help would be great
Thanks
Edna
My blood work doesn't indicate an obstruction, not sure how it would do that to be honest. The only abnormality in my blood has been some potassium imbalances if I recall correctly.

All of my obstructions have been identified by CT scan. Some with, most without contrast. The symptoms I have are pretty consistent: reduced bowel movements / constipation, bloating, pain that has a steady undertone but also comes in waves of increasing severity - at the worst, it leaves me literally in a fetal position trying to find a way to relieve the pain spikes. I'm often dehydrated as I can't drink anything and keep it down. Plenty of nausea, often dry heaves and vomiting. The pain generally radiates out around the entire abdomen as things get worse, and into the back. Finally, hypoactive bowel sounds.

That's a complete obstruction. I've had that four times, all have cleared with bowel rest, pain and nausea control, zero food intake, and bed rest.

I've also had what I and the GI suspect is numerous and to an extent ongoing partial obstructions. Similar symptoms but less severe (though still quite high) pain levels. These last for a few hours and then suddenly, I will hear and feel a loud gurgling and literally in minutes I feel the pain start to subside as things start moving again.

I'm in the same place as a previous poster - when the pain reaches a certain level I just head to the ER. I just know what pain I can manage to either bear until it subsides or manage with Percocet, and if it's getting beyond that, I head to the hospital for them to get ahead of the pain curve. It's not worth the suffering to me. Luckily (?) at this point my history is well established and I don't get treated like an addict when I show up with general abdominal pain as my Main symptom.
07-16-2013, 06:45 AM   #87
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Thank you everyone for replying....I've had crohn's for 8 yrs and 5 of those yrs has been in remssion. These last few yrs has been very painful, and my doctor and my family just isn't taking me serious, when I am telling them " I am hurting". Blood test through these last 3 yrs has been up and down. One time my liver enzymes are off the chart, get that taken care of, then my wbc is high, then to low....then everything is ok, but I'm still losing weight, I'm down to 95 pounds. If I eat, I pay the consequences for it. I have been drinking ensure but that gets exspensive and that is also causing me pain. I have been on Remicade for the past 8 yrs but it seems like it's just not working anymore. My gi suggested that I think about Humira, but when I finally decided on switching, he said it was just a lateral drug from Remicade and it probably wont work either. Why get my hopes up, just to knock them down? I've had to cut my hrs in half at work because of this pain. Now I am going to try and get disability cause the job that I do is just too much for my stomach. I do alot of twisting, bending, lifting, and climbing. I don't want to because I really like my job, and I don't, nor have I ever wanted to be dependent on any kind of assistance, but I don't know what else to do. Just getting so frustrated with this Crohn's crap....sorry.
07-27-2013, 06:53 PM   #88
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let me ask you guys something. i was in extreme pain this entire week (pain around my entire waist line). i admit, i ate like a pig last weekend. ate like two entire gallons of ice cream, some burger king, etc. i finally was able to get two nice #2's in this morning and now i feel great. does this sound like the blockage/obstruction you speak of?
07-27-2013, 07:12 PM   #89
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With a full obstruction you would not be able to pass stool. You can pass some stool with a partial obstruction though. If you didn't have a bowel movement until recently then you may have had constipation and at most a partial blockage but I'm not sure. Constipation can be very painful as well. If possible I'd suggest avoiding all of those items in excess.
07-28-2013, 02:09 AM   #90
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If you didn't vomit everything down to your toenails it wasn't like what I experienced. But for sure constipation can be painful. Take Jennifer's advice and avoid some of that pain.

Last edited by canuckscouter; 09-09-2013 at 08:30 PM.
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