Multiple PeriAnal Fistulas Crohns - Need Help.

[Jayanth]

Redacted

Removed for personal reasons.

 

[bigtruck]

Hi sorry to hear your so down I'm very similar but have a temp ileostomy at the min to let the tail end heal, could this be an option for you? Keep us posted on how your doing and please believe me it does get better.

 

[beth]

Like Ryan says, it does get better. Can you get Humira in India? That's pretty good. Another immunosuppressant is methotrexate, but that can screw your brain a little - well I'm pretty sure it did to mine, I used to be a software engineer too but now can't deal with the stress or concentrate well enough. Have you tried steroids like prednisone...

 

[KWalker]

I just had an abscess drained two weeks ago now and when I talked to both the doctor and the surgeon, they both said all fistulas drain, and if that's the worst that is happening and there is no pain, then you don't necessarily do surgery. However, they said things can be bad if you do have pain. I don't know a whole lot about fistulas, but I do know there are some options. Setons, anti-biotics, etc. I would definately talk to a colorectal surgeon as soon as you can, and they should also be able to give you something for pain.

Just don't give up, there are lots of us young people on here. I'm only 21 myself

 

[Jayanth]

Removed for personal reasons.

 

[KWalker]

I am in Canada, using student health benefits and they cover 80% of my prescriptions, and when I need expensive medicine like Remicade it gets covered under a company called Trillium. I can't answer your questions about setons because I'm going to do what I can to avoid that route for myself. I've lived with drainage from my abscess for the last 3 or so years so I have to wear a pad in my underwear. Nobody sees it, I avoid surgery, who cares.

Come to Canada, we have free health care! Lol

 

[Rivers]

I know it is hard because of where you are, but I would think surgery would be at the top of the list for you. At the very least some setons put in to prevent more abscesses from forming. How about the combination of a new colorectal surgeon, fistulotomy and remicade?

 

[Jayanth]

@KWalker
Thanks for the idea....will look into education options in Cannada. Hope I can survive the weather....I literally have no body fat.

@Rivers
I am scared as hell about a colostomy even if its temp....what if it never heals ? thats my biggest fear. I have consulted 3-4 surgeons in town...they all say that the guy i consulted first is right and surgery is not a good idea. The first surgeon i consulted has some 30 years experience and owns a few hospitals.

Will long term infliximab or fibrin glue be able to help ? Do you guys know about that ?

 

[PsychoJane]

hey Jayanth,
I can't argue about the opinion your surgeons have but all I can add is that I know that colostomy might sound scary but what if it brings you a quality of life? I got my ileostomy at the age of 14, I have 26 now. I was scared at first that people would react (intimacy talking), some have, but it was a minority. Most people understand and does not care and Im not just talking about the "if they love you they will love you the way you are". I'm talking about people I met and to whom I had to tell on the spot because hey, well that was it lol, and it was fine. It takes a time of adaptation, that's a fact, but a few months in and it is a whole new world that is there. If that's even an option at some point, please consider it, if it is a way that could help you have a better life quality at the end.

And yes, Infliximab could help long term. Normally it takes a bit of time before reaching it's maximal effect but it is possible that you don't respond to anti-TNF too...

I hope you find some relief soon, and don't give up, it's one down to go trough but it's always darkest before the dawn.

 

[littlefreebird]

sorry to hear you're having such a terrible time, i know how painful it can be, it's no way to live and more should be being done for you.

my crohn's was up and down for around 10 years. i developed a perianal fistula and got surgery a few months later. i now have a permanent ileostomy, i finally can get on with life.

bigtruck mentioned a temp ileostomy, sounds like it could be a great option for you to give your body time to heal. i don't know why your consultants feel you are better off suffering as you are now rather than looking into surgical options.

 

[JohnnyRottenAppleseed]

Stay on Flagyl and Cipro or cycle on and off. The fistulas get better with time (for me). They used to get blue purple and drain pus and get infected but finally calmed down and finally went away. It took a few years. Make sure you are getting vitamin d3 and magnesium. I'm sorry you are in so much pain. Try to avoid sitting for extended periods of time. I know, easier said than done.

 

[Jayanth]

@littlefreebird glad to hear you are uphill

@JohnnyO
lot a vitamin d3 count done today....SEVERELY LOW (15)...my bones are in trouble !!
Have to look for a good supplement and start it soon....

@Nchuleftingth going to a specialist who does something called Video Assisted Anal Fistula Treatment. Keeping fingers crossed. Also regarding the invalid right.. i dont think the invalid ring will help....the chair on the other hand seems like a great idea...so will do some research and get one. Currently looking into best international student insurance which covers existing conditions as soon as possible.

 

[JohnnyRottenAppleseed]

Carlson D3 drops 4,000 iu drops x2 per day.

So take 8,000 iu a day and get tested regularly. The docs think the healthy range is 30-50ngml but others think 60-100 is better depending on severity of disease. Google vitamin d council and check out Dr Mercola website. He talks about vit d all the time. Your doc will give u D2 by prescription but it is inferior to vit D3.

 

[JohnnyRottenAppleseed]

Take Vit C and Zinc everyday it helps heal your body. My fistulas finally went away after cipro/flagyl and months of Vit C , vit D, Zinc supplements. Also Oil of wild oregano helps fight infections and may help the fistulas.

 

[bigtruck]

I take 30,000 iu of d3 per day in liquid form.

 

[JohnnyRottenAppleseed]

Don't forget to take magnesium and vit k (kale is a great source) and zinc as vitamins work synergistically and not so well alone.

 

[Tay]

Jayanth, I had a very similar presentation to you, including fistula from rectum into bladder. So used to pass gas and bowel contents via urethra. The fistula that exit onto bottocks were agony especially before they burst through. I put surgery off for years for obvious reasons. Tried all the usual drugs etc, finally gave in and had a pan proctocolectomy with a permanent ileostomy. Much better, fistula eventually dried/closed up Good luck and best wishes.

 

[Rivers]

it sounds to me like you have only used medications, not surgeries.
I just had a fistulotomy with LIFT repair and after 2 weeks I am almost 100% normal again. I had a seton in my fistula for 2 months before this recent surgery. I never mentioned a colostomy, I said fistulotomy. The procedure I had has a 75% chance of success according to my colo rectal surgeon. He said even if it didnt heal up completely that there is another small procedure to do on it to heal it for good.

Dont give up, there are options and it does get better.

 

[Sybil Vane]

I am confused why your doctors stopped Remicade after only 3 doses. I know it's supposed to work fairly quickly, but I would have thought they would have given you another dose at 16 weeks before even thinking about stopping it because that causes you to build antibodies and ruins the drug for future use.

I'm so sorry about what you're going through! This disease is so awful and painful.