Golytely caused a blockage after my MRE :(

[Snoflayk505]

So I finally got my MRE on Monday after being tossed around in schedule changes. I had an empty stomach and everything ready for my scan. About 20 minutes after I drank the delicious Golytely, my abdomen started moving around and cramping during the scan. After also a mild reaction to the the injection, they decided no medical intervention was needed and sent me home. My stomach had been twisting since the MRI and got worse over the next hour. I was eventually unable to move and in the most horrible pain in my life with my 3 year old and 11 year old trying to help me. I called my neighbor and she called the ambulance. As soon as the ambulance and fire rescue got to my house they immediately greeting me like I was faking it and annoying them. I was so shocked. I was having trouble talking because the pain was so unbearable so they were only getting more annoyed with me. Then I started projectile vomiting the orange juice I had when I got home Once that happened and they saw my stomach under my ostomy was rock hard and sticking out they believed me I guess.
I hate that I ALWAYS have to convince them or docs and medical professionals that I'm not faking it. Anyways, I'm terrified to eat and my stomach is still in alot of pain after my 9 hour blockage working its way out in the ER. Missed e call from my GI yesterday so waiting for him to call today.

I have had Golytely before, I don't understand what happened. Also my MRE showed nothing according to the ER doc.

They still have no idea why I am getting blockages so frequently. No sign of Crohn's so far. Waiting for my GI to call me back so we can do some type of scope.

 

[Jennifer]

The Golytely isn't going to cause a stricture, it was already there. It did however aid in making everything back up (more than likely bound to happen at some point). I'm worried about you not being on any meds unless its purely scar tissue you're dealing with but something caused that scaring to happen (more than likely repeated/chronic inflammation) and that needs to be treated. Hopefully your GI will figure out what's going on and will figure out what would be the best treatment for you.

Good luck and keep us posted!

 

[Snoflayk505]

My Doctor nor the ER doctors can find any evidence of Crohn's or inflammation. They are saying it is scar tissue. I also have a hernia so that is probably another issue (A loop of my small intestine is pulled through my abdominal wall I guess.) Still waiting for my GI to call me back so we can talk about doing something. If it is scar tissue that is causing these blockages whenever inflammation or some type of irritation happens to my intestines, how do they fix it? Am I just going to have to live through this forever until I need emergency surgical intervention? Sigh, I can never get a break. If its not one thing it's another I'll get through it though, I'm a fighter but man ami exhausted.

 

[Jennifer]

There are three options for scar tissue.

One: Have the area stretched via scope (this is not permanent and will need to be done again and again until eventually it may not work anymore so not really ideal but could be a quick fix while you wait for options two and three). It depends on where and how severe it is though.

Two: You can have a strictureplasty where they cut the area, force it together and sew it back up making a larger opening (this is a surgical procedure and again depends on the severity).

Three: You can have it removed via resection.

Sorry I don't have any information on the hernia.

 

[Snoflayk505]

Thanks Crabby. I am so glad to hear that there is at least options for me. I have heard that too many abdominal surgeries is not a good idea because it builds scar tissue.... Is this one of those cases where the benefits outway the risks or whatever?

 

[Snoflayk505]

Yay! My doc finally called me back. We talked for a while and he says he thinks my intestines are twisted near my stoma somewhere with some scar tissue or something blocking my ostomy. He says unfortunately we just need to wait until the next time I'm blocked and do something called a Gastrograph? So he can find the source of where the obstruction is occurring since imaging is showing nothing. He was talking about sticking a tube down my stoma to open it when that occurs. Sigh, that means I have to go through the torture of a blockage one more time to get some real answers Until then Im to stay on a low fiber diet. On the positive side, there is a plan at least. feels like a step in the right direction =D

Im not finding much information on Gastrographs and still can't figure out how to search for threads lol. Anyone have info on a gastrograph?

 

[Jennifer]

From what I've read through online is that "gastrograph" is medical slang for "gastrograffin" which is a contrast used in small and large bowel follow throughs (see small bowel follow through on the forum wiki). I believe you'll probably have it pumped into the stoma and then they'll do x-ray or CT imaging.

Indications and Usage for Gastrografin

Gastrografin (Diatrizoate Meglumine and Diatrizoate Sodium Solution) is indicated for radiographic examination of segments of the gastrointestinal tract (esophagus, stomach, proximal small intestine, and colon). The preparation is particularly indicated when a more viscous agent such as barium sulfate, which is not water-soluble, is not feasible or is potentially dangerous.

Gastrografin may also be used as an adjunct to contrast enhancement in computed tomography of the torso (body imaging); the preparation is indicated, in conjunction with intravenous administration of a radiopaque contrast agent, when unenhanced imaging may not provide sufficient definition in distinguishing normal loops of bowel from adjacent organs or areas of suspected pathology.
http://www.drugs.com/pro/gastrografin.html

I've had this test done before but not through a stoma (never had one) and only had the enema with barium (I've drank this Gastrografin before then had a CT scan and I've drank the barium many times).

Although I don't see why they have to wait for a blockage really. Couldn't they see it if the test were done now since it will show scar tissue etc.? I just don't understand why they have to wait because a blockage could mean emergency surgery on the spot with no time to do any special tests. :/ Can't you get a second opinion from another GI?

 

[Thermo]

Sno for most people the abdominal wall can take multiple surgeries before you have a problem. I have read about people having 20+ surgeries before so don't get too worried, make sure you relax right now you need to take care of yourself and watch your anxiety level. Make sure your doctor gives you some good pain medications, I know everyone here will beg to differ but a blockage in a Crohns patient is actually not considered a life threatening emergency. Unless they cant get you stable they will always wait it out as they know whats causing it. So in the mean time you will sit there in agony so make sure if he wants you to wait for the next one that he gives you some good drugs so you don't have to pay for the brigade of police, fire and ambulance to your door again.

 

[Snoflayk505]

Crabby
Thanks so much for all that info! My GI was going to do the test now but he does not think we will get the answer where the blockage is occurring unless we do it while I'm blocked. I really do have an awesome GI. He is always asking me what I want to do and what I think about things. He just feels that we will not see the direct source of the problem if we do it while I'm not blocked. I could ask him to do one for now, but I'm not really sure it will help cuz nothing is obstructed.

Thermo
Thanks so much for your support I have no idea how I am even still alive going through all of these blockages. The pain is unimaginable. I guess I've been lucky that it works itself out eventually.
I would LOVE to have some type of pain medicine i could use the second I get blocked but what should I ask him for? It is absolutely impossible to ingest any pill or liquid... Please let me know if you know of something he could prescribe me to help me control my pain at least a little until I get to the ER. I seriously don't know how much more my body can take. My tummy still feels like a giant bruise inside I ate a little squash yesterday but still haven't really eaten sine Sunday cuz I'm so scared to get blocked

 

[Thermo]

Please let me know if you know of something he could prescribe me to help me control my pain at least a little until I get to the ER. I seriously don't know how much more my body can take. My tummy still feels like a giant bruise inside I ate a little squash yesterday but still haven't really eaten sine Sunday cuz I'm so scared to get blocked

Ok we are getting into a taboo topic for doctors and thats pain management, while Crohns patiences have a high risk of pain killer abuse, in my opinion your situation is perfect for one of the most potent pain killers made and thats Fentanyl which comes in a dissolve lozenge or a patch you put on the inside of your cheek. You could also look at Oxymorphone which is an injectable or a suppository. You will no doubt get turned down immediately but if you cannot take pills there are not many pain killers you can take except these two which have a different delivery system. I strongly suggest you push your doctor for an emergency supply of these medications because we both know what an obstruction feels like but a doctor doesn't. If he wants you to wait for the next obstruction he needs to supply you with a means to wait out the storm this is just my opinion because I have had an obstruction before and never again will I not have painkillers handy for that emergency situation.

 

[Snoflayk505]

Thanks Thermo! I'm sure I won't have a problem getting something. lol I would laugh at my doctor if they tried to deny me some type of relief with all the crap I am going through. Literal torture. I'm in so much pain every second of the day I really hope one day I get a break. Sorry for sounding so down. Feeling really overwhelmed at the moment. My rectum gets worse daily and hurts so much. Now my tummy again. Sigh, I just want a break. At least I have my Crohn's in check right? lol
Anyways, I think I will ask for just one dose of some pain med for this one emergency he is now pushing on me. It's a really great idea because it seriously feels like my stomach is going to explode when it happens. As a fellow obstruction sufferer I see you know what I mean.

 

[Thermo]

One thing they push on you in the hospital after surgery but then shy away from it when you are out is how pain medication can be used for recovery. When you are in constant pain your body doesn't have the time to relax and your nerves are constantly on edge. This is not to mention the lack of sleep you get due to your stomach as well. In the hospital they tell you how important it is to your recovery that you use your pain medications when you need it, so I feel the same way outside of the hospital as well. I would recommend to get more than one so you can allow your body to rest if even for a minute once a week. If you cannot achieve remission you cannot be in pain 24/7 there is a fine line between an addict and pain management, you shouldn't live in constant pain your body will never heal. Let me know if they give you a problem as I'm sure it will be a good laugh. My GI does the same with me he doesn't even question me anymore I trust him and he trusts me so there is no abuse going on. Good luck, I hope you start getting some relief soon!

 

[Snoflayk505]

I actually have a huge bottle of vicodin but i usually only take some at night so i can get some sleep. Its really hard to sleep in so much pain. I actually am in remission though. My pain is from the abscesses in a cavity where my rectum used to be and now my bruised tummy. The SCD diet put me in remission my doc can't find any sign of Crohn's. He is convinced its just scar tissue. My tummy feels a little better today but still super sore from Monday's block. I ALWAYS get blocked exactly 12 hours after eating something I shouldn't have or Golytely so far. Not looking forward to the next block. I wrote out a little information sheet about my medical history and doctors request so people will stop getting annoyed with me cuz I can't talk. Shoulda done that a while ago hehe.