I've Exhausted My Options...Help

[Nalshaer]

My name is Nadia, and I've been diagnosed with Crohn's Disease since 2010. I am currently 21 years old. In the span of these 6 years, I have tried Pentasa, Azathioprine, Humira & Aza combo, Remicade & Aza combo, Cimzia, and am currently on Vedoluzimab (Entyvio) & Aza combo. I've failed every single one of the medications, including the Vedo, and now my doctors are talking seriously about a temporary ileostomy in the near future to give my colon time to heal. They would then like to introduce Stelara after reversal. My disease is moderate to severe and located primarily in the descending colon and rectum. I've had two fistulas and that have required seton bands to be inserted, and multiple abscess drainages. I cannot even begin to describe the mental, physical, and emotional toll this disease has had on my body. Furthermore, my mother is fully adamant that my disease can be cured by the power of Aloe Vera, prayer, and dietary changes, which makes it exponentially harder for me to consider surgical options. I'm at the point where I'm afraid there is something non-invasive that I have yet to try, however, I am so exhausted that I want to beg the doctors to do anything necessary to relieve me of my agony. Any advice would be incredible. I'm just in this alone and I'm afraid.

 

[ronroush7]

I am sorry that you are having trouble. Pentasa only hits the surface of the problem. My doctor had me on Pentasa very briefly but then switched me to Lialda. I hope you find relief soon. Besides Stelara, there is also Simponi.

 

[wild_one353]

None of that will cure you, but usually a combination of Medication's, dietary changes and supplements will help the most. Here is some of what helped me through. I've tested lots of stuff and how it affects my disease over 7 years. some of the diet info may be difficult to apply because I make everything from scratch but you can still use it to generally guide your decisions as for what to eat.

1. Vitamin d- 2000iu in summer, 4000iu in winter. studies show this helps reduce crohn's symptom's.

2. be selective with carbohydrates- avoid simple and refined sugars like soda, white sugar and consume low sugar fruits like cranberries, apples, grapefruit. reduce intake of grapes, raisins or banana.
Avoid lactose in milk, eat cheese for calcium instead and consider calcium supplements calcium carbonate is fine.

complex carbs like rice corn and potatoe can cause problems, I find oats, well cooked pinto beans, and some brands of whole wheat are fine. White bread without iron is also tolerable. there is a book called breaking the vicious cycle that is a special diet developed around this idea to help treat IBD and other conditions the diet is called the specific carbohydrate diet or SCD diet. It's tough to adhere to and also includes making you own yogurt, I've tested many principles in the book and tried to summarize it for you here but read the book sometime.

3. low fod maps- these are certain fermentable carbs and fibers in food that seem to irritate ibd like onions and garlic.

4. be aware of your omega 3/6 ratio of fats, consume and cook with canola instead of corn oil, don't eat butter or fatty meats like sausage or bacon. take a little fish oil but not alot. I get fat from walnuts, unshelled pistachios, canola oil, and whole olives.

5. make an herbal tea- this can kill bacteria that try to live in your gut cause symptoms I use green tea, basil, italian herb blend, cumin, clove, fresh ginger, black pepper.

6. drink irradiated water so that any microorganisms are killed that might invade your gi tract.

7. vitamins e and c, these will help boost your immune system to fight of bacteria in you body. Take 500mg of vitamin c every day and Vitamin e 400iu tocopherol once per week only. you can also take one tocotrienol pill once per week as well.

8. probiotics- take VSL#3 as this is been used to treat pouchitis and U.C. and probably the best on the market. I take 50 bill per day and I believe taking more may be better, this doesn't do that much actually for crohn's but I've noticed more benefits for my anxiety and depression.

9. Resveratrol I use this supplement but small amount and it suppresses some symptoms, I use about 1/10 of one capsule per day, doctors best brand, this is optional though. Turmeric is something else I use occasionally but i find turmeric has side effects but it does suppress symptoms I use about 1/8- 1/4 teaspoon in my tea when i use it.

10. cook your veggies and don't eat them raw. start with broccoli cauliflour soybeans spinach. slowly test others as you go.

11. Avoid anything with sucralose or artifical sweeteners, carageenan, synthetic fibers derived from cellulose, arginine supplements, any supplements with high amounts of niacin or inositol.

12. If you are really adventurous you can look into fecal microbiota transplants follow the link below its good to learn about them anyways.Some scientists believe it has cured people and I have tried 4 of them with some benefits derived and planning to do it again. Here is my article/blog: http://fecaltransplant2015.blogspot.com/2014/09/transplants-effective-for-ibd-fecal.html
I think it's the best collection of information on FMT that exists besides the thread I have on this website follow the link below.

 

[caretothepeople]

Ugh, I'm sorry it's been so hard and so much trial and error for you. Surgery is a big decision, and if it does get to a point where you're considering that more seriously or your doctors are, getting a second (or even third) opinion can help. It's a big decision and you want to feel confident and comfortable about what you're doing.

So just for example some things to consider asking throughout this as you go on exploring next steps... (these are from the US Library of Medicine)

Will I be able to wear the same clothes as before?

What will the stool look like that comes from the ileostomy or colostomy? How many times a day will I need to empty it? Should I expect an odor or smell?

Will I be able to travel?

How do I change the pouch?

How often do I need to change the pouch?
What supplies do I need, and where can I get them? How much do they cost?
What is the best way to empty the pouch?
How do I clean the bag afterward?

Can I take showers? Can I take a bath? Do I need to wear the pouch when I bathe?

Can I still play sports? Can I go back to work?

Do I need to change the medicines I am taking? Will birth control pills still work?

What changes do I need to make in my diet?

What can I do if my stools are too loose? Are there foods that will make my stools more firm?

What can I do if my stools are too hard? Are there foods that will make my stools looser or more watery? Do I need to drink more liquids?

What should I do if nothing is coming out of the stoma into the pouch?

How long is too long?
Are there foods that may cause blockage of the stoma or opening?
How can I change my diet to prevent this problem?

What should my stoma look like when it is healthy?

How should I care for the stoma every day? How often should I clean it? What types of tape, creams, or paste can I use on the stoma?
Does insurance cover the cost of ostomy supplies?
What should I do if there is bleeding from the stoma, if it appears red or swollen, or if there is a sore on the stoma?


Hope these help as a start to guide some of those conversations.

Hopefully others here can chime in about experiences with meds and other options.

 

[Nalshaer]

@wildbill_52280, do you think that any of these would work if the disease has already progressed to the point of severe narrowing in the descending colon? The inflammation only seems to respond to steroidal treatment at this point. I wish I had started taking dietary precautions sooner.

 

[Nalshaer]

@caretothepeople, thank you so very much for your time and response. Those are all fantastic questions. As surgery becomes a looming option, I am highly considering getting a third opinion before making this decision. It's certainly very difficult for me to do, and without much support, I don't feel confident that I am doing the right thing. I will make sure to ask about all of this. You've truly been a life saver, thank you.

 

[wild_one353]

@wildbill_52280, do you think that any of these would work if the disease has already progressed to the point of severe narrowing in the descending colon? The inflammation only seems to respond to steroidal treatment at this point. I wish I had started taking dietary precautions sooner.

It's hard to know that really. What I can say is that for the first five years of my crohn's I didn't take any drugs and this is pretty much all I did. My diarhea was under control pretty much the entire time with some minor fluctuations at most i had 2 bm's on one day. I eventually went on lialda to improve a little more but i think i had become slightly worse over time it doesn't mean that this would help you, if combined with string meds, it could be really powerful. if you do try any of what i advised, it be nice to hear back from you if anything seemed to help.

Also, I've never had any procedures or really bad complications(blockages, fistulas,surgery etc) since being diagnosed, I was very insistent on avoiding modern medicine and I pretty much read everything on the internet that i could. I did experiments and conducted them on myself to find another way and develop my own opinions on how the disease worked. Being treated for acne for years before developing IBD left a very bad impression of doctors and the state of medicine on me unfortunately, but hindsight i should have taken the stronger meds for IBD. Coincidentally the antibiotics i had taken for years to treat acne are now linked to developing ibd, that's kind of what made me fascinated with fecal transplants and the idea of restoring the damaged microbiome to correct disease states. I'm still pretty much set on perfecting and performing a successful FMT, and not too interested in taking stronger meds but more open to the option these days then past.

 

[valleysangel92]

Hello and welcome to the forum,

Unfortunately if you have got to the point of having fistulas and severe narrowing it is likely that you will need to consider surgery. Dietary and lifestyle changes can help to reduce symptoms and sometimes may help avoid blockages and obstructions, but it will not heal fistulas. If the medication is failing then surgery is usually the next step.

I know it must all be really frightening, particularly if you have not had major surgery in the past, but there are many people out there living full and happy lives because they have a stoma. I know many who say it has really changed their lives for the better. Of course its a big step and not something anyone but you can decide is right, but there are a few things you should consider -

Firstly, the doctors would not suggest such big surgery if they didn't think it was absolutely neccessary, they will want to take the safest route and there comes a point where medication just stops being enough.

Secondly, it is much better to have planned (elective) surgery than to have emergency surgery. The fitter you are going into the operation the better the recovery and the less chance of complicstions. If left, complications like a rupture can occur and these can be life threatening. I am not saying this to scare you, it's something you need to discuss with your doctors and see if they feel there is a good chance of this becoming an emergency or if you have some time to wait and see if you can come up with another approach that you are more comfortable.

Thirdly, what's your quality of life like? If you're struggling and finding it hard then there is no shame in admitting that and enquiring as to how likely it is that surgery will improve that. Take a look around this forum and see what other people's experiences are.

Of course surgery is not a quick fix and can be a difficult time for some people, there is always a chance of some complications and some people struggle to adapt to a stoma, so that should be considered too, but if after talking to your doctors some more and exploring the forum etc you feel that it is the right option for you then please don't be put off by the stoma, many people live really full and active lives with them and find they are actually a lot less restricted than before the surgery.

As for your mum, it sounds like she might be in a little denial about how serious this is, it must be really hard for her to see you so sick and so she's trying to help in the only ways she knows how. Could she perhaps go to some appointments with you and be involved with some discussions so that she can better understand what you are dealing with and feel like she is involved and helping in a practical way?