Crohn's Disease Forum » Treatment » Methotrexate » Methotrexate or colostomy?


03-10-2018, 11:49 AM   #1
Tuff
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Methotrexate or colostomy?

This board seems to be inactive, is nobody on methotrexate?
My recent colonoscopy showed that my large intestine is toast. The doctor is giving me two options, either try Methotrexate in conjunction with my Stelara injections for four months, or have 2/3 of my large intestine removed and get a colostomy bag. I haven't been feeling that sick, so I would like to try the drug first. Has anyone gone into remission on it? How bad are the side effects?
03-10-2018, 12:33 PM   #2
ronroush7
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I have never used that particular drug for my Crohn's disease, i don't believe. I would opt for taking the medicine first before surgery. Wishing you the best.
03-10-2018, 12:36 PM   #3
my little penguin
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Ds takes Stelara and 17 mg of orally mtx .
You need to take folic acid daily with mtx
Ds takes 2 mg a day
This lessens any side effects

Remember Stelara takes 6 months to work
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03-10-2018, 02:33 PM   #4
Tuff
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I have been on Stelara since last April. My gastroenterologist moved away last July, and I finally got a new one last month. He increased the frequency from 8 weeks to 6 weeks, so hopefully that will help. Has your son had any reaction to the methotrexate?
03-10-2018, 04:13 PM   #5
Maya142
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I don't know about adults, but for kids, MTX is used a LOT for IBD. In fact, it is being used more and more now because it has fewer cancer risks than Imuran or 6MP.

Both my girls have been on MTX. One is still on it, 9 years later. She has had no issues except mild nausea after she takes it. It can be given orally or by injection. She had more side effects with oral MTX (the pills) - mouth sores, more nausea and fatigue, and so she switched to injections. She is fine with the shots - it's a teeny tiny needle and a very easy shot.

Most GIs like using the shot because that way you don't have to worry about the drug not being absorbed.

If you get nauseous with it, you can try Zofran. Folic acid also helps with side effects. My older daughter takes MTX before bed so she can sleep through most of the side effects. She tends to be tired and mildly nauseous the next day, so she does it on the weekend. It has worked wonderfully for her joints.

My younger daughter, who has both Crohn's and arthritis, was unable to tolerate MTX - too many side effects. She was nauseous, dizzy, and would throw up. Would be in bed for 2 days after the shot. But that is a VERY extreme reaction and very unusual.

We tried all the tricks to keep her on it because it really worked for her - gave her extra folic acid, doubled the dose of Zofran, added another nausea med, reducing the dose but nothing helped enough and she hated wanted to get off it.

It worked like magic for her joints and I do think it helped her Crohn's as well, though it's hard to say because she was also on Remicade at the time.

But anyway, I would definitely try it.
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03-10-2018, 05:36 PM   #6
Tuff
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Thanks Maya, that is very reassuring. If they are using it a lot for kids, I don't feel so worried about taking it. My new doctor told me that there are a couple of promising new drugs coming down the pipe, so it's good to know they are working on Crohn's.
03-10-2018, 05:47 PM   #7
Maya142
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Oh yes - it is a very safe drug. It has been used for juvenile idiopathic arthritis (JIA) for decades. They give it to toddlers routinely for JIA.

They will monitor your liver carefully at first - we had to do weekly blood work for a while, but that might just be for kids. But even if it isn't weekly, they will still watch your results. We have not had any liver issues at all.

One other thing - ask your doctor about drinking on MTX. Since it can be hard on the liver, drinking is not the best idea. Some doctors allow it, some say no way.

My daughter (who is 24 now) did drink in college while on MTX. In fact, she went through a phase where she was drinking a LOT - you know, like college students do ! And she hadn't even turned 21 yet! But anyway, thankfully her liver enzymes were always fine and she grew out of it relatively quickly.

Her current rheumatologist says she can have 1-2 drinks a week and that is it. No more. And now she is older and follows that rule (thank goodness!).

I know you may not drink because of the IBD but thought I should warn you!

Really hope it works for you. Good luck!!
03-10-2018, 05:59 PM   #8
Tuff
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Thanks for the warning. My drinking consists of a few glasses of wine at Christmas, so I should be ok.
03-10-2018, 10:51 PM   #9
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I have tried methotrexate injection alone, 20mg/week, but it failed to keep me in remission unfortunately. No side effects during the treatment that I recall. Maybe a bit of hair loss. Definitely worth the try before surgery. Good luck!
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
03-11-2018, 07:36 AM   #10
OleJ
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I am on MTX and it works for me. would definitely second trying that before surgery.
After 20 yrs of CD I have finally figured how important for my health it is to eat properly and avoid stress as much as possible.
I used to need 15mg/week + Remicade to stay in remission. Two years ago I started following the research into the role of beneficial (probiotic) / harmful (MAP) gut bacteria, "leaky gut", and the importance of rest and avoiding stress hormones for a healthy digestion.
I changed my diet, found a less stressful job, and started to avoid all foods that may contain MAP bacteria.
The last year I have gradually improved to a point where finally, after 20 years on lots of medication, I manage symptoms on 10mg MTX every second week and no other drugs.
Have you tried the IBD-AID diet? If you are fortunate enough to get a reduction in symptoms with MTX and avoid immediate surgery, maybe it would help to cut out as many projects you may have work / career-wise, try to go through the IDB-AID diet, and stay clear of all processed foods - especially the ones with MAP in them. Look for the words "milk", "cheese" or "cream" on the content labels.

The above is not for all, I recognize that, some will try these changes and notice no improvement. Since they are without side effects, though, and the positive outcomes increasingly backed by serious research, I for one figured it was worth a shot.
Maybe you already tried something similar?

I hope you will get better!
03-11-2018, 09:47 AM   #11
Tuff
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I too quit my stressful hectic job, and went vegetarian about five years ago. I have added chicken because I'm not getting enough protein. I have tried FODMAP but not IBD-AID. I will look into that. I'd rather hold off on having major surgery unless it's absolutely necessary.
03-11-2018, 10:23 AM   #12
OleJ
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I too quit my stressful hectic job, and went vegetarian about five years ago. I have added chicken because I'm not getting enough protein. I have tried FODMAP but not IBD-AID. I will look into that. I'd rather hold off on having major surgery unless it's absolutely necessary.
Glad to hear about your jo decision!
And yes, I too think it is worth fighting to keep the colon.

What I did was I made an excel spreadsheet with a huge list of food items and their energy content, so that I could map out what I eat and see if I got enough protein, carbs, calcium etc. That was a great help in getting to know what my body really needed, and stop just stuffing myself with crap food without giving much thought as to the quality of it as I have done before.

I found out that with a strictly vegetarian diet I was rarely below the RDA of protein which is surprisingly low: 60 grams/day for me. I am still eating fish, cod liver, organ meat, eggs, and occationally chicken soup though because of the good stuff in these food items.
I stopped eating beef (both steak and ground), and I think that helped some.

The FODMAP diet never made sense to me, I have to admit. There are some strange OK/NOT OK destinctions in the sources of carbs - like carrots are ok, beetroot is not???
03-11-2018, 10:57 AM   #13
Tuff
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I found a free app called Myfitnesspal that tracks your calories, carbs, fat, protein, sodium and sugar. I'm usually low in protein and fat. It's easy to use because there's a huge database of food items to pick from. What is frustrating for me is, I was already on a healthy nutritious diet before I got sick. I was raised on a Nordic diet (Finland) and have always cooked from scratch. I got sick anyway. Beetroot contains high amounts of OLIGOS and that's why it's eliminated.
03-11-2018, 11:39 AM   #14
OleJ
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thanks for clarifying about the beetroots. I have to look into oligos, I can see I don't know enough. I will also check out myfitnesspal.
Out of curiosity: What about cow's meat and dairy? Have you been eating or avoiding that previously? what about now?
03-11-2018, 12:25 PM   #15
Tuff
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FODMAP was developed for IBS. It's to reduce bacterial overgrowth in the small intestine. I was having a LOT of bloating, so that's why I went on it. It's only for a matter of weeks, then you can start introducing other foods.
https://www.organicburst.com/blogs/o...stive-troubles
I have never eaten much beef, but have had dairy since I was a child. Currently I eat yogurt and hard cheeses and sometimes ice cream, which I can't live without. My new doctor wants me lactose free. He's very much into diet as a treatment.
03-11-2018, 03:47 PM   #16
OleJ
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You can actually get some very delicious dairy free icecream.. eg. https://coconutbliss.com/
I can only tell you that I improved after quitting everything dairy; milk, cream, icecream, cheese... Yes, I know how hard it is to change that habit

I had loads of dairy. In fact, about a year or two before i had my first symptoms my family got unpasteurized milk directly from a farm. Back in the 90's there were also MAP infections in the herds, and I speculate if the potential heavy exposure back then plays a part in my developing CD. Pasteurization kills most (not all) bacteria, but the raw milk I got was probably loaded.

Here's what (some) experts currently say regarding the link between CD and MAP:
https://humanpara.org/consensus-arti...ap-conference/

You are very lucky to have a GI who is concerned with diet. Maybe try to share this online lecture with Dr. Marcel Behr with him/her and see what he/she thinks. I tried getting a specialist in infectious diseases to watch it and comment on it, but that person was not willing to look into it:

https://youtu.be/7x3lq8QEg5g

Last edited by OleJ; 03-11-2018 at 04:08 PM.
03-11-2018, 05:13 PM   #17
Maya142
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There is also sorbet which does not contain dairy. My daughter likes these: https://www.talentigelato.com/produc...free-sorbettos

But there are lots of brands that have both ice cream and sorbet.
03-11-2018, 05:16 PM   #18
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Frozen pieces of bananas as sole ingredient put in a food processor makes delicious and so easy to make ice cream! Add raw cacao powder or any other fruits for different flavors!
03-12-2018, 10:10 AM   #19
Tuff
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Thanks for the links. This is a small town, so there may not be a lot available. I have had soy ice cream, but can't tolerate it. Rice Cream was good, but they discontinued for lack of sales. I will have to check the bigger chain stores to see if they have anything. Meanwhile, I have bananas in the freezer. Should go nice with my home grown organic strawberries and raspberries.
03-13-2018, 04:32 AM   #20
OleJ
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home grown organic strawberries and raspberries... nice!
04-22-2018, 07:19 PM   #21
Tuff
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I had to wait six weeks for my biopsy results before I could start MTX. My large intestine is covered in ulcers, is narrowed, and looks awful. I didn't have a lot of symptoms though. 3-4 liquid bms and a lot of mucus, sometimes bloody. Fatigue, some dull pain. I did my first injection last Monday. It's been six days and I already see a lot of improvement. My bms are getting more solid, and the mucus and bleeding has stopped. I used to have to get up a few times a night to pass mucus, and thankfully I can sleep through now. I'm so happy that this is working. Next week I have blood work to see if it's doing anything else. I often have side effects, so here's hoping it's not doing anything to my bone marrow or liver. My doctor is giving me three months for it to work. My full dose will be 25 mg, but I started with a lower dose and increase it biweekly.
04-23-2018, 07:31 AM   #22
Lisa
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Glad to hear it is working for you so far - may it continue!
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04-23-2018, 08:12 PM   #23
cmack
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That's good news, Tuff. I hope things are going to continue to improve for you.
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