Long story short .. My daughter has been experiencing cramping after eating and constipation. Her GI put her on Delzicol a couple months ago but it does not seem to be helping much. She had a small bowel follow through, fluoroscopy and on 3/9, a colonoscopy. GI says he doesn't know how she is even pooping as she has an extremely narrow passage from her small intestines to her colon. He said he has a feeling they will want to do surgery on her and wanted to put her on steroids and 6mp. She deals with anxiety and immediately turned down the medications because she is afraid the side effects will make her even more anxious. She is now wanting to call her GI and request these meds because of her pain. My question is this ... Is it possible for the steroid to calm down the inflammation enough to avoid surgery or is it to the point where she will end up having to go through with it? i am just looking to see if anyone has experienced this scenario and what the outcome was. She was diagnosed with Crohns in 2010, was put on Pentasa but stopped taking it when she ran out. She is seeing a new GI.
Is prednisone the answer?
- Thread starter DomzWife
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I don't think anyone can say with certainty how much the stricture is caused by inflammation and how much is scar tissue (which can't be treated with medication) but it is certainly sensible to try and reduce inflammation as much as possible to see if she improves and also because this is a good idea before surgery if she does end up needing it.
Steroids are one option for treating a flare but I would also suggest giving Exclusive Enteral Nutrition very serious consideration as the benefits can be very similar to steroids but without the undesirable side effects and it's actually better for achieving mucosal healing.
Has your daughter ever tried Enteral Nutrition before? There are a number of formulas that are palatable enough to drink.
I was diagnosed with Crohn's at 17 and started on prednisolone and really struggled with all the side effects - anxiety, depression, weight gain/fluid retention. After that course of prednisolone I moved to the liquid diet for treating inflammation and I would have much preferred that I had been offered that option initially.
Steroids are one option for treating a flare but I would also suggest giving Exclusive Enteral Nutrition very serious consideration as the benefits can be very similar to steroids but without the undesirable side effects and it's actually better for achieving mucosal healing.
Has your daughter ever tried Enteral Nutrition before? There are a number of formulas that are palatable enough to drink.
I was diagnosed with Crohn's at 17 and started on prednisolone and really struggled with all the side effects - anxiety, depression, weight gain/fluid retention. After that course of prednisolone I moved to the liquid diet for treating inflammation and I would have much preferred that I had been offered that option initially.
theOcean
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I have anxiety problems, so I can see why your daughter would be afraid the medications would make it worse. I found it didn't -- the only thing you have to be careful of before going on steroids is if you're prone to mania, if you're worried about psychological side-effects. It would really help with her inflammation in the meantime to be on it, and I've been on prednisone, 5-ASAs, Imuran, 6mp, biologics, if you want any input on that.
Otherwise, if she does have that bad of a stricture, surgery may have to be an option to consider at some point since scar tissue won't heal -- it would eliminate a lot of pain for her, would mean she hopefully doesn't have to be careful with diet (which should be low fibre with a stricture), and hopefully she would be feeling much better. I've been watching my friend go through dealing with a stricture, and he just got his surgery for it last week and has been consistently been giving me health updates.
Otherwise, if she does have that bad of a stricture, surgery may have to be an option to consider at some point since scar tissue won't heal -- it would eliminate a lot of pain for her, would mean she hopefully doesn't have to be careful with diet (which should be low fibre with a stricture), and hopefully she would be feeling much better. I've been watching my friend go through dealing with a stricture, and he just got his surgery for it last week and has been consistently been giving me health updates.
Thanks for the replies. I will have to look up the een. I know she is willing to try anything. My 20 year old daughter was just diagnosed with crohns January 2014 as she was going through a severe flare from the mouth on down, lost 30lbs etc. it is scary to watch your child go through that. She was put on steroids and 6mp, ended up in the hospital 5 days after coming off the steroids. So, my oldest daughter saw what her sister went through and is scared to take any now.
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How is her diet? A lot of doctors don't think that diet affects crohn's in relation to remission but I have had a lot of success with the SCD (specific carb diet). It kept me out of the hospital and without pain for three years. The only thing is that it is super strict and if you don't follow it strictly it won't work.
DomzWife - there's a subforum for EEN here which you might find helpful and I'm happy to do my best to answer any questions you may have - as I'm sure are lots of others.
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From the situation you are describing your daughter is in a lot of pain ; my guess is that if pred. will work for her and she feels better (it is a very powerful drug for Crohns) then her mood will only get better as she will have some relief...
tapering is no picnic but hey, you got a fire to turn off first
tapering is no picnic but hey, you got a fire to turn off first
Her diet isn't awful. We have been cutting out the sugars, flours etc. being an italian family, most foods are prepared from fresh produce and such. We are not big eaters of processed foods. No soda. She has a strong sweet tooth though and will sneak the pastries in. Since being threatened with steroids, she has committed to doing even better. She has begun eating smaller meals more often. She did not have any cramping yesterday or so far today. I am thinking it is just because she just had her colonoscopy last Monday and is not quite back to normal yet. She has only had to poop once, which was on Saturday morning. Our GI can be an a.... I think he is just a pill pusher as he told my other daughter she would be on 6mp for life. He won't listen to questions because he doesn't give any time to even ask. He says what he needs to say and leaves. I doubt he believes in any other treatments. He won't prescribe humira or the other one because he said he wouldn't want his own kids on it. But, he brought it up after the colonoscopy. I am rambling. Sorry. Everything about this situation is just so frustrating but we are stuck with the GI and stuck with the diagnosis.
I have mentioned een to her, not sure she is onboard to totally commit but I do think she will try to soften her diet a lot more. I am going to head over to the board and get some more knowledge on this.
I have mentioned een to her, not sure she is onboard to totally commit but I do think she will try to soften her diet a lot more. I am going to head over to the board and get some more knowledge on this.
Hi DomzWife,
Just some quick info because I can see you are not getting advice on this possible treatment from your doctor
*whilst moving to a softer diet/low fibre or low residue diet or having smaller meals can help with the symptoms of strictures it won't have any effect on inflammation so if the goal is to reduce the inflammation to see if this affects the degree of narrowing then this isn't going to achieve that. It is a way that people manage their strictures if they have scar tissue but it doesn't affect active disease.
*to have a similar effect on inflammation to steroids you need to take 90% or more of your calories from a liquid diet. There is that little bit of room for some small snacks/light meals but it is never the less a big commitment and not easy.
*you can start seeing reduction in inflammatory markers within 1 week of doing EEN so that does provide some good motivation to keep going for anything from 4-8 weeks total duration
I am really positive about EEN myself but at the end of the day we all have to make our own decisions about our treatment. But I know what it's like to have doctors who are close minded about effective treatments because of their own personal bias and so I think it's useful to have a forum like this one where people are advocating for the range of treatments available. Obviously you have experience of steroids and know all their downsides (as well as their ability to decrease inflammation) so I guess all you can do as a mom is present your daughter with her options. I am, as you are, dismayed that your daughter's GI doesn't agree with a similar approach for his patients. I really don't think there is any justification for him being against prescribing humira or infliximab. Is there any chance of getting another GI? Having a doctor who will talk through all the options and listen to you and give you time to ask questions is very important and I think it makes a big difference to start out the management of a lifelong disease with a doctor who lets you participate in that process.
Just some quick info because I can see you are not getting advice on this possible treatment from your doctor
*whilst moving to a softer diet/low fibre or low residue diet or having smaller meals can help with the symptoms of strictures it won't have any effect on inflammation so if the goal is to reduce the inflammation to see if this affects the degree of narrowing then this isn't going to achieve that. It is a way that people manage their strictures if they have scar tissue but it doesn't affect active disease.
*to have a similar effect on inflammation to steroids you need to take 90% or more of your calories from a liquid diet. There is that little bit of room for some small snacks/light meals but it is never the less a big commitment and not easy.
*you can start seeing reduction in inflammatory markers within 1 week of doing EEN so that does provide some good motivation to keep going for anything from 4-8 weeks total duration
I am really positive about EEN myself but at the end of the day we all have to make our own decisions about our treatment. But I know what it's like to have doctors who are close minded about effective treatments because of their own personal bias and so I think it's useful to have a forum like this one where people are advocating for the range of treatments available. Obviously you have experience of steroids and know all their downsides (as well as their ability to decrease inflammation) so I guess all you can do as a mom is present your daughter with her options. I am, as you are, dismayed that your daughter's GI doesn't agree with a similar approach for his patients. I really don't think there is any justification for him being against prescribing humira or infliximab. Is there any chance of getting another GI? Having a doctor who will talk through all the options and listen to you and give you time to ask questions is very important and I think it makes a big difference to start out the management of a lifelong disease with a doctor who lets you participate in that process.
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Sugars are the biggest thing. I would really look into research behind the SCD as far as candida and the balance of good bacteria vs bad bacteria in the bowel. If you really want to avoid biologics and steroids I would seriously consider putting her on a diet whether it's SCD, Paleo, or EEN. Never let these GI's bully you. You always have a choice and have to be your child's advocate like my Dad was for me.
Thank you both. We are definitely going to sit down and discuss this. She is all about changing her diet if it will help. Personally, I think she should get on the steroids and see how it goes. It is what helped my other daughter and I don't think she would be on them long. She is 22 though, so I can only be here to support her decisions. I do try to help her with her diet as much as I can. Good thing she still lives at home.
As for changing GIs, unfortunately he is all we have right now. I am not comfortable seeking care that is almost 2 hrs away when a flare is involved. There are other GIs closer but they will not take our insurance, Tricare Prime. When my 20 year old ended up in the hospital here, I complained to a nurse about how the GI told me to take her to the ER so she could be admitted and he would come see her, but he never showed up ... Until after I complained. He came in and acted liked he cared and gave me a speil about how some people seek other care through universities and such but they won't get what they need from them and they just try different treatments. Basically making me feel like an idiot. My daughter has applied to attend college in the Raleigh, NC area and I am so hoping she gets in just so I can change GIs. I will also consider having my other daughter change GIs if we find a good one. For now, we are stuck here with him and just need to get my daughter to feeling better.
I was also diagnosed with crohns and have recently been sent a reminder from this GI that it was time for a chedkup. No thanks. I don't feel like I have any need to see him right now. Hopefully I won't ever.
As for changing GIs, unfortunately he is all we have right now. I am not comfortable seeking care that is almost 2 hrs away when a flare is involved. There are other GIs closer but they will not take our insurance, Tricare Prime. When my 20 year old ended up in the hospital here, I complained to a nurse about how the GI told me to take her to the ER so she could be admitted and he would come see her, but he never showed up ... Until after I complained. He came in and acted liked he cared and gave me a speil about how some people seek other care through universities and such but they won't get what they need from them and they just try different treatments. Basically making me feel like an idiot. My daughter has applied to attend college in the Raleigh, NC area and I am so hoping she gets in just so I can change GIs. I will also consider having my other daughter change GIs if we find a good one. For now, we are stuck here with him and just need to get my daughter to feeling better.
I was also diagnosed with crohns and have recently been sent a reminder from this GI that it was time for a chedkup. No thanks. I don't feel like I have any need to see him right now. Hopefully I won't ever.
I hope your daughter gets well soon on those meds! Wishing you all good health!
