Can you help?

[boots]

Hi, I have just had the results of my small bowel scan and am told I have fistulas, about 1 foot of damaged bowel and need to get medication. I only ever have stabbing pains and respond well to predisonal. Is this a bad diagnosis or one that is hopeful? What should I do to help myself???
Thank you

 

[Clash]

Welcome to the forum boots! Sorry to hear you have been diagnosed with CD. Since prednisone isn't feasible as a long term treatment you do need to look at going to a maintenance med. Also having fistulas means that your CD is severe or fistulizing CD so the quicker you get all inflammation under control the better. I know Remicade is supposed to be good at healing fistulas but other meds may work well too.

The Fistula Subforum(<--click here) as well as Fistula Support Group(<--click here) may be able to give you more insight into treatment and such.

The Diet Forum(<--click here) may also be something you find interesting.

And the Treatment Forum(<---click here) has information on treatment for CD.

You don't have a bad diagnosis per se just one that you will want to stay on top and work towards remission. Good luck with whatever treatment plan you and your GI decide upon.

 

[boots]

Thank you for your quick reply! I am getting a bit panicky as I don't know anything about this. I only have stabbing pains, but they get so bad I can't stand up. But the steroids do a good job and I feel nothing while I am on them. I am worried about the side effects of the medicines. I have tried a crohns type diet and lots of probiotics, omega 3, but just feel out of control. I don't know how to get to remission!! Really appreciate support as feel totally bewildered.

 

[snowhite_dahlia]

Hi boots and welcome! So sorry to hear about your diagnosis, but you'll find a lot of info and support here!

The first step is to meet with your GI and make a game plan about getting your fistulas taken care of and the inflammation under control - that will be the first step to getting your disease into remission. I will tell you that the road ahead probably won't be super easy - the first six months after my diagnosis were some of the worst of my life as me and my doctor tried to get my disease under control. However, there are a LOT of options out there for treatment and really, it's just a matter of finding what works for your body and your needs. Some people here are able to keep their Crohn's in remission through diet alone - mine is severe enough that I take a powerful biologic drug (Humira) to keep myself healthy (in addition to keeping an eye on my diet.) Yes, there are risks with taking it, but I feel that the benefits greatly, GREATLY outweigh the risks. That might be a decision that you (hopefully with some good input from your GI) will have to make.

Basically, there IS hope. Start doing research, find a GI you trust, and read, read, read. There's no cure for Crohn's (right now!), but there a great many treatment plans that can help you lead a full and fulfilling life. <3

Also, as Clash said, Prednisone is definitely not a maintenance drug - it's very powerful and does a good job of getting symptoms under control very quickly, but the trade off is that it has nasty side effects. The Prednisone will keep things under control for now, but the goal for you and your GI will be to transition you off of it and on to a more permanent treatment plan.

Best of luck! <3

 

[Clash]

I'm sorry you are still struggling to find remission. Did your GI reccomend a maintenance medication once the fistulas were found? Steroids do seem to work quickly for many CD'ers at getting the symptoms and such under control. The problem is once you taper off the inflammation and sypmtoms will come back.

The meds work like a pyramid at the bottom you have 5ASA drugs like asacol and pentasa(but these don't have great results in studies done treating CD, although are helpful for Ulcerative Colitis) next you have immunosuppressants: Imuran(AZA), 6MP, and methotrexate then at the top would be the biologics: Remicade, Humira, Cimzia. As well as surgery, stem cell transplant and clinical trials.

There are also other treatments such as LDN(low dose naltrexone), helminth therapy, fecal transplant, diet and the list goes on.

CD does seem to come with a steep learning curve so research every thing you can, talk them over with your GI along with the treatment he is reccomending. Make sure that you go over all your concerns and questions so you can feel confident in whatever treatment you choose. But it is important to get your CD under control.

I hope you find the right treatment for you soon and get to feeling better!!

 

[boots]

Thank you so much for your support. It is an absolute joy to get so much info back so quickly! I am back next week for more info, blood tests, talking about what drug to take. It looks like immunosuppresants. I don't know how severe they think it is. I am really lucky not to have it so that I need the loo all the time, have no appetite etc and shouldn't moan. I just get awful stabbing pains when I am not on steroids. I don't know whether the amount of bowel affected at the ileum is a lot or not much. I am just frustrated cos I don't seem to get it right. After diagnosis in the Autumn I tried really hard with alternative therapies and diet to get everything right but then my inflammatory markers went even higher and was back on steroids before I could blink. That was after doing everything right!! Sorry to hear everyone elses troubles. you are both so generous helping me xx

 

[boots]

p.s can you explain fistulas??

 

[PsychoJane]

Hi boots,
Sorry to here you are struggling with CD... It can really be annoying at the time you go through a crisis.

Pretty much, fistula are like "tunnels" that links a source of inflammation/infection, with another cavity (it can be your intestine, the skin, a hollow organ like the bladder, etc. I once posted that to another member to help understand what they are:

... Fistula can be of various "form" more or less intense lets say. Some can be small, some can be big. It may be draining puss, cause well, what happens with a fistula is that the intestine wall get kinda "destroyed" by ulceration through all the layers [there are 3 distinctives layers that constitute your intestin]. It makes a hole and dig a tunnel that reachs through other organs/skin. Therefore its like "infection" (from the crohns ulcers kind of), that the drains Mix of mucus and digestive acid. If the hole is big enough, air/fecal matter can go through. I know it may sound a bit extrem but that is what it is. It sounds bad like that but that is to clarify it.

Fistula can be there without causing pain as long is it does not affect nerves so it can be tricky to consider them a problem at first but they should be taken seriously because of the complication they may cause.

All together, they mean that the crohn treatment needs to be more specific if I may say. Unfortunately, you can't simply rely on melsalamine for your initial treatment (Pentasa/Asacol) as they have no effect on treating fistulae. So the initial approach will generally be the immunosuppressant (ie: Azathioprine (Imuran), Mercaptopurine (Purinethol / 6-MP)) sometimes methotrexate but this is less common for fistula.
Then, the other possibility are the biologic drugs such as Cimzia, Remicade, Humira. These are really good with fistulizing crohn and they can sometime be used in pair with the immunosuppressor.

Antibiotics are often prescribed, as they will control the inflammation/infection and will help allowing the "tunnels" to close.

You will have to keep in mind one thing as well. The most annoying part of fistula is the fact they won't "disappear". They can become inactive, but they can reactivate at any moment if I may say that. That is why you need a specific treatment to keep them in remission. They will be there, but they won't cause issues. I know that at first, when I got mine (they were reaching the skin so I could see them), I took a course of antibiotics and they did close, the skin even grew over them. I though they were gone for good cause well, I had not been told that they actually never leave. And well a few months later, all came back. Point is, they only REAL treatment is surgery. Even if it sounds really scary it can sometime be a really good option as it give actual remission for a while.

I hope this sounds clear, if it does not, just ask, we will gladly try to clarify any interrogations.

 

[boots]

That is really helpful. So could you advise me what I should ask the GI next week? And how have you managed to become med-free? Have you had any bad side effects from the meds? Ha I feel so stoopid not knowing anything!!

 

[PsychoJane]

Well, every one get different manifestation of the disease. For me, I got a reallly severe crohn crisis (well they thought it was UC at first) when I was a teenager. They managed solving it by removing my colon as it was a fulminant crisis. All that happened very quickly. Then they let me go without any medication and I'Ve been in remission for 10 years. I got my second crisis at 24. I've know my crohn was active because I had a enterocutaneous fistula. So I had antibiotics and biologics, it kept the fistula quiet for a bit but then it stopped working (everyone is different on that matter, for some these medications work for years, for me... it worked a few months only as your body can build antibodies to the treatment). So I ended up again with surgery but it still is my favorite option.

The reason I don't have medication as of now is that I had considerable side effects from the biologics and since I don't have active crohn (because of the surgery) and have shown long term remission without medication once, then my GI as agreed to let me go with strict follow up (frequent blood tests and calprotectin fecal test). When the disease will be active, I guess I'll be switched to remicade or any new biologics or therapies that will be available at the time being. For now I am healthy and happy and try to be coherent with my food and life style.

Oh! and by the way, don't feel stupid, tell yourself it is years of experience with the disease that has allowed me to know what I know now about it. That, and curiosity. I use to know nothing...

As far as what you should be asking to your GI, my guess is that he will probably suggest you the immuno alone or with biologics as you have fistula. It can do very good for many and it a therapy that works for a long time. It all need to be discussed. One point is that, there is pretty much no way of being off meds if the condition is present unless you go through surgery in my opinion. Even there, it is not a cure, just a remission that might last longer (or not). Crohn is such an unpredictable creature...

 

[boots]

Well I am in awe of your spirit and ability to deal with this. I am just struggling to see how I can deal with this rather than let it deal with me. Thank you for all your advice and information. i shall speak to the GI and no doubt have more questions to bombard you with!! Thanks again!

 

[soccermom081105]

I have a question if anyone can help? I have Crohns disease and I am not sure how to tell if you have fistulas..I understand that they are tunnels but Sometime i get something like "boils" under my arms and sometimes in the groin area.. i am not sure what they are and if they maybe related to the crohns'

 

[PsychoJane]

Well my guess would be that if both manifestions (groin/armpit) are related to each other, then it would be unlikely that they would be CD related fistula because of their localisation. There are several type of dermatological problems that might be related to glands. I don't know much about these pathology but it sounds a bit like Hidradenitis Suppurativa which varies greatly in severity. You may want to have a look at this site:
http://www.patient.co.uk/health/Hidradenitis-Suppurativa.htm.

I don't know if this help or if it is close to your conditions. I cannot say if it is related or not to crohn as I have not done research on the subject so far, but I have seen a few that had it.

 

[soccermom081105]

That helps some. Thanks for the quick response