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New to forum...looking for help

I have had crohns for 24 years. I am currently 43. I was diagnosed in 1994. I had my first bowel resection in 2001 and second in 2010. These were both to remove active crohns. In 2016 I got really ill. I’m 5’9 and went from 155 lbs to 102 kbs in 3 months. All my labs kept coming back okay except for severe loss of potassium and magnesium plus always dehydration. I was going to drs and Er constantly because I couldn’t tolerate the pain. All X-rays, CT’s, upper and lower scopes showed nothing but I wasn’t getting better. Finally a surgeon gave me the option of doing an exploratory surgery and I jumped on it because I could no longer live in pain and too weak to do anything. After the surgery they told me that there was no way they could of seen on any test how messed up my intestines were. Due to scar tissue and adhesions my bowels were twisting around themselves. They had to remove large portions just to put them back together right. It took almost a year of healing from that surgery and left with short bowel syndrome. Since then my crohns has been inremissiom. I was put on a medication Gattex for the short bowel which helped me absorb food better. I could eat again and I put back on all my weight plus another 25lbs I didn’t need. Lol. I have just been on lialda since then for maintence. Towards the end of January 2019 I found myself back in the hospital with a bowel obstruction. Since January I’ve been hospitalized for 6 obstructions, 3 ilius and Intussusception. Luckily all have cleared with out need for surgery. I e gone from 180lbs down to 140lbs. Not really upset about getting back to my normal weight but don’t think this is how you’re suppose to lose it. I’m in the ER 2-3 times a week with unbearable pain. Pain so bad I just wanf them to literally cut the area off of me. This pain is in an area I’ve never experienced before. It is directly over my stomach, my last left rib and below that. Besides for the ripping pain that feels like contractions it feels like someone has their hand stuck up under my rib cage and is trying to pull them out. I have a gi dr I’m currently visiting twice a month. I was calling them 2-3 times a week because of the pain. They would say go to the ER ASAP so I do. The ER does all the same test. Most of my blood work comes out fine. Last week my WBC was at 25,000. If they didn’t think much of it and as of Tuesday it was down to 13,000. The biggest issue is my hematocrit (I think or hemaglobin which ever test blood levels). It hasn’t been low enough to need a blood transfusion but it has been discussed because it keeps going anywhere from 13 to 9. There is blood in my stools but with every single test they cannot find the source of the blood. The GI dr wants me to get on Intivo? Or something without any proof that there is active disease. Upper and lower scopes both showed no signs. They sent me to a pain clinic. Side note the dr at pain clinic is awesome. He remembered me from this same situation 3 year ago. He told me that there are just some patients that you couldn’t help that always stick out in your mind. He said that when he saw my name on his schedule he stayed up most of the night reading all my charts since our last visit 3 years ago. Yes I believe he did because he knew everything that I have been going through and he had an answer ready for me before I got to office. He wants to put a pain pump in under my abdominal muscles that attaches to the spine and sends meds in that way. He explained to me that although opioids are great for you especially long term that this route is safer in terms of side effects and chances of becoming addicted. We are in the process of seeing if insurance will allow this. Currently he does have me on a strong oral pain medicine. Even with this about once a week the pain is too much so I go through the routine of calling GI, getting told to go to ER, going to ER and doing all same test once a week. EXPENSIVE!! It feels like the ER is getting sick of means some drs make me feel like or actually accuse me of drug seeking. Some days I cry just because I don’t want to go see those faces again and pray I don’t get the drs and nurses who treat me that way. There are days I refuse to go to ER and I just curl up and cry but my family always makes me go. I love them for that and they are correct in their thought process. They say that 1 in every 3 times I go I get admitted for obstruction of some sort and I can’t just ignore that and have it get worse which may end in another surgery. So I go but people can be so mean that going to ER actually makes me feel sicker. I don’t really know what the exact question is that I need help with is. All I can think is “what do I do now”. I can’t keep living with this severe of pain, I can’t keep going to the ER so often. We are waiting for some more specific labs before trying that new medication but should I take a medication like that with no proof of active disease? Do I look for a surgeon to try to take adhesions out?Yes I forgot to mention they are what are causing the blockages. I know that scar tissue will come back from every surgery but they did tell me I could have another 2-3 year without complications. It’s also a little more risky because they would have to be very careful to not take out little to no bowel but is it more risky than living daily on strong pain meds? What about the bleeding? I only know the levels because they test it in ER what if I can have a whole week without going to ER will they get scary low? Why does no one seem to concerned about not knowing the source of the bleeding? If they found the source maybe they can stop the bleeding. However with all the test they’ve already done what way is left to find the source? I have so far told you the results of the test the drs do. I have told you that no one seems overly concerned. At least not close to as concerned as I am. I’ve had this disease for a long time and been through some pretty bad things with it. I almost died after a surgery. My whole digestive track shutdown. I almost died from an allergic reaction to remicade. I know what my body feels like when something is wrong and every part of me is telling me that something is very wrong. How do you make a dr know that when his test are telling him that nothing is dangerously wrong. They tell me in the ER that even though I’m dehydrated, losing weight at every visit, losing blood and in severe pain my labs do not indicate a need for admission. So I don’t know what to do anymore. This lab work we are waiting on takes about a month to get results because it’s some rare test that is only done in California. I just had it done so that’s going to be awhile. Don’t have scheduled appt with GI u til test results are in. Currently pain clinic is trying to find a psychiatrist that does this special test to make sure I am stable enough to get surgery for pain pump. They have 3 drs that do it but none of them take Medicare. So waiting on that. Meanwhile I’m laying in my bed because when I stand the pain is even worse. It feels like there are heavy rocks in my stomach that the weight of is ripping my stomach when I stand. So don’t have much quality of life currently. I’d much rather be outside gardening or mowing the law. On one of the rare days it’s not raining out. I don’t want to change GI drs. I like my dr and the only other place that will take Keon asa patient is the University of Iowa. They may be awesome for a lot of things but I do not praise their gi system. Okay so I’ve just ranted a whole lot to the few strangers that may read this. I e told you more about how I personally feel than my friends and family. I will be very grateful if anyone has any advice, anyone been through something like this or even a miracle suggestion of what I do now. Thank you for taking the time to read this and just letting me get these thoughts out to someone. Also excuse my poor spelling. Thank you.
 
I have had crohns for 24 years. I am currently 43. I was diagnosed in 1994. I had my first bowel resection in 2001 and second in 2010. These were both to remove active crohns. In 2016 I got really ill. I’m 5’9 and went from 155 lbs to 102 kbs in 3 months. All my labs kept coming back okay except for severe loss of potassium and magnesium plus always dehydration. I was going to drs and Er constantly because I couldn’t tolerate the pain. All X-rays, CT’s, upper and lower scopes showed nothing but I wasn’t getting better. Finally a surgeon gave me the option of doing an exploratory surgery and I jumped on it because I could no longer live in pain and too weak to do anything. After the surgery they told me that there was no way they could of seen on any test how messed up my intestines were. Due to scar tissue and adhesions my bowels were twisting around themselves. They had to remove large portions just to put them back together right. It took almost a year of healing from that surgery and left with short bowel syndrome. Since then my crohns has been inremissiom. I was put on a medication Gattex for the short bowel which helped me absorb food better. I could eat again and I put back on all my weight plus another 25lbs I didn’t need. Lol. I have just been on lialda since then for maintence. Towards the end of January 2019 I found myself back in the hospital with a bowel obstruction. Since January I’ve been hospitalized for 6 obstructions, 3 ilius and Intussusception. Luckily all have cleared with out need for surgery. I e gone from 180lbs down to 140lbs. Not really upset about getting back to my normal weight but don’t think this is how you’re suppose to lose it. I’m in the ER 2-3 times a week with unbearable pain. Pain so bad I just wanf them to literally cut the area off of me. This pain is in an area I’ve never experienced before. It is directly over my stomach, my last left rib and below that. Besides for the ripping pain that feels like contractions it feels like someone has their hand stuck up under my rib cage and is trying to pull them out. I have a gi dr I’m currently visiting twice a month. I was calling them 2-3 times a week because of the pain. They would say go to the ER ASAP so I do. The ER does all the same test. Most of my blood work comes out fine. Last week my WBC was at 25,000. If they didn’t think much of it and as of Tuesday it was down to 13,000. The biggest issue is my hematocrit (I think or hemaglobin which ever test blood levels). It hasn’t been low enough to need a blood transfusion but it has been discussed because it keeps going anywhere from 13 to 9. There is blood in my stools but with every single test they cannot find the source of the blood. The GI dr wants me to get on Intivo? Or something without any proof that there is active disease. Upper and lower scopes both showed no signs. They sent me to a pain clinic. Side note the dr at pain clinic is awesome. He remembered me from this same situation 3 year ago. He told me that there are just some patients that you couldn’t help that always stick out in your mind. He said that when he saw my name on his schedule he stayed up most of the night reading all my charts since our last visit 3 years ago. Yes I believe he did because he knew everything that I have been going through and he had an answer ready for me before I got to office. He wants to put a pain pump in under my abdominal muscles that attaches to the spine and sends meds in that way. He explained to me that although opioids are great for you especially long term that this route is safer in terms of side effects and chances of becoming addicted. We are in the process of seeing if insurance will allow this. Currently he does have me on a strong oral pain medicine. Even with this about once a week the pain is too much so I go through the routine of calling GI, getting told to go to ER, going to ER and doing all same test once a week. EXPENSIVE!! It feels like the ER is getting sick of means some drs make me feel like or actually accuse me of drug seeking. Some days I cry just because I don’t want to go see those faces again and pray I don’t get the drs and nurses who treat me that way. There are days I refuse to go to ER and I just curl up and cry but my family always makes me go. I love them for that and they are correct in their thought process. They say that 1 in every 3 times I go I get admitted for obstruction of some sort and I can’t just ignore that and have it get worse which may end in another surgery. So I go but people can be so mean that going to ER actually makes me feel sicker. I don’t really know what the exact question is that I need help with is. All I can think is “what do I do now”. I can’t keep living with this severe of pain, I can’t keep going to the ER so often. We are waiting for some more specific labs before trying that new medication but should I take a medication like that with no proof of active disease? Do I look for a surgeon to try to take adhesions out?Yes I forgot to mention they are what are causing the blockages. I know that scar tissue will come back from every surgery but they did tell me I could have another 2-3 year without complications. It’s also a little more risky because they would have to be very careful to not take out little to no bowel but is it more risky than living daily on strong pain meds? What about the bleeding? I only know the levels because they test it in ER what if I can have a whole week without going to ER will they get scary low? Why does no one seem to concerned about not knowing the source of the bleeding? If they found the source maybe they can stop the bleeding. However with all the test they’ve already done what way is left to find the source? I have so far told you the results of the test the drs do. I have told you that no one seems overly concerned. At least not close to as concerned as I am. I’ve had this disease for a long time and been through some pretty bad things with it. I almost died after a surgery. My whole digestive track shutdown. I almost died from an allergic reaction to remicade. I know what my body feels like when something is wrong and every part of me is telling me that something is very wrong. How do you make a dr know that when his test are telling him that nothing is dangerously wrong. They tell me in the ER that even though I’m dehydrated, losing weight at every visit, losing blood and in severe pain my labs do not indicate a need for admission. So I don’t know what to do anymore. This lab work we are waiting on takes about a month to get results because it’s some rare test that is only done in California. I just had it done so that’s going to be awhile. Don’t have scheduled appt with GI u til test results are in. Currently pain clinic is trying to find a psychiatrist that does this special test to make sure I am stable enough to get surgery for pain pump. They have 3 drs that do it but none of them take Medicare. So waiting on that. Meanwhile I’m laying in my bed because when I stand the pain is even worse. It feels like there are heavy rocks in my stomach that the weight of is ripping my stomach when I stand. So don’t have much quality of life currently. I’d much rather be outside gardening or mowing the law. On one of the rare days it’s not raining out. I don’t want to change GI drs. I like my dr and the only other place that will take Keon asa patient is the University of Iowa. They may be awesome for a lot of things but I do not praise their gi system. Okay so I’ve just ranted a whole lot to the few strangers that may read this. I e told you more about how I personally feel than my friends and family. I will be very grateful if anyone has any advice, anyone been through something like this or even a miracle suggestion of what I do now. Thank you for taking the time to read this and just letting me get these thoughts out to someone. Also excuse my poor spelling. Thank you.
Need to learn to proof read before posting and above I meant to say pain meds aren’t good for you long term. I’ll learn to do this better.
 
Location
San Diego
Need to learn to proof read before posting and above I meant to say pain meds aren’t good for you long term. I’ll learn to do this better.
Hello - it might also be helpful if you broke long posts up into several paragraphs. That would make it easier to read.

But in any case, welcome to the forum. I'm sorry you are suffering so. It's puzzling that you have so many signs of active Crohn's but they can't quite find it on scopes or CT scans. Have they done an MRE? That might be a way to get a better look at the small bowel.

I would normally suggest a capsule camera endoscopy to visualize the small bowel, but with all your history of obstructions I'm thinking that would not be a good idea.

Even if they can't find an inflamed area, the chances are very good that your chronic blood loss and pain are coming from somewhere in your gut. Thus, since you have already been formally diagnosed with Crohn's, I think it might be a good idea to go ahead and try Entyvio as your GI wants to do. You need something to get this pain and blood loss under control. Pain medications will just mask the pain without addressing the cause. The side effects of Entyvio are less than many of the other biologics, so I'm thinking it just might be worth a shot to see if it can improve your condition.
 
Thank you for your advice. No they haven’t done an MRE. I’m not even sure what that is. Is it like an MRI?
Yes it is.

I have blockages too and was hospitalised for a week after an CT-enterography because of the Metamucil contrast they needed for that, which caused another blockage.
If you can get one with a more suitable contrast like milk, a CT enterography might also be an option.

But I know for sure an MRE can be done with a mannitol contrast and an injectable so is far safer for people with blockages and is able to pinpoint where the inflammation starts and finishes.
Not sure if it could pinpoint the source of the bleeding as I wasn't bleeding when I had it done. Maybe someone else will know that?


My GI also won't do a capsule endoscopy due to the blockages so if you can get an MRE I'd definitely recommend it.

Good luck, I hope you get some decent help soon!
 
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