Severe problems

[Malacoesa]

Hi all,

I am a 32 year old male been diagnosed with crohns since age 14. I live in holland (a tiny country in europe).

Since 9 months i am suffering from huge peri anal abscesses and fistula tracts. it hurts alot and i am on oxynorm 5x 10mg, oxycontin 2x 10mg and some other painkillers. it doesnt help alot i cant sit walk or stand because of pain. My belly is complety free of sympthoms. Meds: remicade each month 10mg per kilo weoght, 100mg Imuran and antibiotics.

My question is if anyone has had these problems and knows were on the planet they might find a solution that doesnt require a stoma. Im hurting so much.

Thanks for any help.

 

[smallfry]

I am sorry for your pain. Abscesses are the worst!!! Have they talked to you about a seton? I have a seton stitch in one of mine to help with drainage, it keeps the pain down in a way so the abscess does not keep healing and filling up again. I am also on a 2 month course of IV meropenem, only available through IV I think. It is a strong wide range antibiotic and I am on home care for it so that it is covered. I am done my dose on monday and it seems to have shrunk my abscess. I am still having some discomfort but pain is down from a 8-10 to a 3!!
I also have a temporary ileostomy and am very happy with my decision. It is great to not have the extra pain from poop. It's a lot to get used to but I say worth it for me. Plus it is temporary...
I hope your pain starts to get under control soon. Have you talked to your doctor about depression?

 

[sawdust]

Hi Malacoesa, and welcome to the forum. Fistulizing Crohn's can be very tough, and as you know, can be painful. I hope that your pain can be managed well, and quickly. Please tell your doctor about your depression. :hug:

I had a seton as well for my perianal abscess and fistula. My fistula certainly could be uncomfortable and ache, but I didn't find it nearly as painful as the abscess. In my case, the surgeon decided to place a seton to keep the fistula tract open to help keep it from collecting into an abscess.

Hang in there, Malacoesa! :hug:

 

[KWalker]

Welcome! I was also going to ask if you've had any discussions about surgery for the fistula/abscess. I too had very severe abscesses but I had surgery for them which included packing afterwards but I definitely don't need a stoma.

Hang in there buddy, I'm a 22 year old male myself and yeah it was very stressful and painful but the second I woke up in the recovery room from surgery I felt a million times better. All they did was cut the abscess, clean it out and take out as much infection as they can and then pack it everyday so it can heal from the inside out.

 

[Jennifer]

Hi Malacoesa and welcome to the forum! Sorry to hear about all the pain you're in. May I ask what antibiotic/s you're taking and what dose?

So far I've seen some great suggestions already with the stetons, stronger antibiotics, possible minor surgery to cut the wound open and let it heal from the inside out through packing and seeking help for depression.

Do you and your GI feel that the Remicade is doing its job or was that started recently? If you've been on it for a while I was wondering if you have tried Humira or not?

Keep us posted on how you're doing. Feel free to talk anytime, we're all here for you. Again, welcome to the forum.

 

[UnXmas]

I'm sorry you're feeling suicidal over this. Whether you end up with a stoma or not, living with this disease and being happy is possible. I find it hard to understand because despite severe health problems (I have other conditions too) my medical issues and physical state are in no way the worst thing about my life.

I know people have posted that you should talk to your doctor about depression. Keep in mind that if you tell a doctor you feel suicidal they may be forced to commit you even against your will. I'm not sure if that's true in Holland, but in most countries if you are perceived to be a danger to yourself a doctor has to take action which will have consequences for you. If you really feel this way, though, it may be that talking to a doctor is the best thing to do.

Is it the stoma you're most worried about? Would it help to read the posts here and see that there are people who are happy despite having stomas? A stoma was mentioned as a possibility for me recently, and I see it as a good thing as it may improve my quality of life and reduce the rectal problems I'm currently getting.

Or is it just the pain that's so bad? If a stoma would help wouldn't that be a better option than carrying on as you are?

 

[Malacoesa]

Hi to all,

First thank you all for your replying my post. To answer all the questions see below:

Problem of fistula and abscess started about 9 months ago. Things that have been tried:

About 13x surgery. Seton wire, mushroom drains, cleaning the abscess and making the drainage opening bigger etc and etc.

Numerous antibiotics treatments.

Azathioperine

Remicade

Right now a am beeing treated in Belgium for the last 5 months. in Holland after alot of surgery and etc they wanted to remove my anus and bowel and place a stoma. so i went to a hospital in belgium. This is my second opinion. The dokters there have tryed: increasing the dose of remicade, aza, antibiotics. Also instead of the (horrible and huge) mushroom drains they work with a bandage that they insert into the abscess and fistula tract. Unfortunelly it doesnt work. So the plan is to place a temporery stoma so they can open up the fistula tract wide and big and place vacuum bandages in the deep tract. Afcouse there is no garanties that this will help. If it doesnt ill be stuck with the stoma for life.

Right now my choice is either to live with this pain or to try the big surgery. I am wroting a letter to the Mayo Clinic, anyone know about that hospital?

About me consodering suicide, i have spoken with two psychologists. I dont have a depression, this is what they tell me, ijust dont want to live handicapped. This is no life, a stoma for me would also be no life. Too much to get used too. I am suffering wit crohns disease for 18 years now, still sucks..! Afcouse you all also know im not the only one here.

Im very curious about treatments in the mayo clinic or about dr william sandborn. Maybe even clinical trials?

 

[UnXmas]

I've not had anywhere near these problems with Crohn's, though my other illnesses have caused me far more distress (e.g. one made me infertile - I think that was the hardest for me to accept).

I don't know about that hospital, but I can tell you that something that made a big difference to me was getting referred to an international specialist. This wasn't for Crohn's, but for a much rarer condition. I ended up at a hosptial in London, and though I live in the UK anyway, the level of expertise they had at this specialist centre far surpassed the knowledge of my local consultants. I think you've every reason to hope that finding the right specialist could give you more help than you've been able to find elsewhere.

That makes sense that you're not depressed but are instead feeling bad in reaction to your circumstances. I can relate to that kind of logical depression -some things just are hard to deal with.

I wish I could enable you to see a stoma is not as bad as it seems. Maybe you could post in the stoma subforum and see what responses you get there? If you have the option of a temporary stoma, you may at least be able to see how you find it. You might be surprised at what you are able to accept and cope with. Is there anything particular about a stoma that worries you?

 

[Malacoesa]

@unXmas

It seems to me that you have had to deal with alot. I really hope that the Mayo clinic or Dr William Sandborn have good ideas about treatment.

I am really an going out person, sports, sauna, the beach and picking up girls etc.. Also i am very healthy lifestyle and take good care of my body. With a stoma i can never do the sports that i love anymore (contactsport), i just have to give up alot and afcouse i can do alot but ill have to adapt. Ive searched the internet and a stoma requires a lifestyle wich i dont want to adapt too. I rather be dead. Also the amount of pain that i have right now is so much that i rather be dead. Im taking 20mg oxycontin en 60mg oxynorm everyday and some other painmeds.

 

[KWalker]

Hi to all,

First thank you all for your replying my post. To answer all the questions see below:

Problem of fistula and abscess started about 9 months ago. Things that have been tried:

About 13x surgery. Seton wire, mushroom drains, cleaning the abscess and making the drainage opening bigger etc and etc.

Numerous antibiotics treatments.

Azathioperine

Remicade

Right now a am beeing treated in Belgium for the last 5 months. in Holland after alot of surgery and etc they wanted to remove my anus and bowel and place a stoma. so i went to a hospital in belgium. This is my second opinion. The dokters there have tryed: increasing the dose of remicade, aza, antibiotics. Also instead of the (horrible and huge) mushroom drains they work with a bandage that they insert into the abscess and fistula tract. Unfortunelly it doesnt work. So the plan is to place a temporery stoma so they can open up the fistula tract wide and big and place vacuum bandages in the deep tract. Afcouse there is no garanties that this will help. If it doesnt ill be stuck with the stoma for life.

Right now my choice is either to live with this pain or to try the big surgery. I am wroting a letter to the Mayo Clinic, anyone know about that hospital?

About me consodering suicide, i have spoken with two psychologists. I dont have a depression, this is what they tell me, ijust dont want to live handicapped. This is no life, a stoma for me would also be no life. Too much to get used too. I am suffering wit crohns disease for 18 years now, still sucks..! Afcouse you all also know im not the only one here.

Im very curious about treatments in the mayo clinic or about dr william sandborn. Maybe even clinical trials?

I'm not sure why you're on Remicade because there is a lot of concern that Remicade is seen to halt healing of abscesses so doctor's tend to hold off on prescribing Remicade until the abscess is healed. (See xX_LittleMissValentine_Xx) Also, having a stoma will only hold you back as much as you let it. My little brother has a stoma after almost losing his life and now he is medication free, and living a 100% normal life. He has no pain, no limitations, etc. The only change he has is that he has to take a few minutes out of his day once and awhile to change his "bag" in his room. Very few people know he has it, and those who do are completely supportive because the stoma gave him his life back.

Think about it this way, would you be happier with a friend who is sick and in and out of the hospital every week or a friend who has an unnoticeable stoma and lives a normal life and can do anything a normal person can do? Or let's look at rygon on here. He has a stoma and been skydiving over 100 times now I believe. A lot of "normal" people don't go sky diving and here he is fulfilling his goals and not letting this surgery hold him back. You sure as hell couldn't do activities like that when you're sick and in so much pain. Or let's look at Misty-Eyed, I think she spends more time in a bathing suit than she does in normal clothes! lol (just kidding, but seriously) There are many people who still go to the beach, play sports, etc.

I was in the same position as you before and thought I'd rather die that live with something as "awful and embarrassing" as a stoma but after living with crohn's for my whole life, if I was really sick and didn't have much of a life, I would much rather a minor setback than continue to live with a low quality of life.

Stomas have given many people on this forum their lives back. If you have a look at the stoma subsection on here, there are so many strong, independent men and women who live their lives to the fullest and are so thankful to be able to live a full life again. Some of the happiest/healthiest members on this forum are the ones who have had stoma surgery and are no longer in pain.

Put it this way, would you turn your back on your family or even your friends if they were in the ones who had a stoma? Probably not. Your true friends will support you and be there for you and those who don't aren't really your friends at all. Hang in there buddy, I'm here for you.

 

[smallfry]

I am sorry you don't understand how much relief a stoma can bring. I'm sorry u are worried about your image over your health. Are you able to do your sports and work out in this pain? You are giving into the stoma stigma. Stoma's give people their lives back! KWalker said it all very well...

 

[xX_LittleMissValentine_Xx]

Just to back up what KWalker mentioned about the remicade and abscesses. Because its a immunosuppressant drug it can make abscesses a lot worse.
My doctor clearly spelled this out to me when I was getting frustrated I hadn't started yet. It was first mentioned to me as a treatment back in March but I havn't been allowed to start it while I have had an abscess reoccurring. I have just had surgery to lay open my fistula and clean up the abscess area and I am now hoping to start remicade soon.
I'm sorry for everything you are going through it sounds horrible. I can understand why you feel the way that you do. But if you read through or talk to people on here with a stoma they will tell you you can live as normal. Ofcourse its a massive adjustment and not an easy thing to deal with. But over time you would get used to it.

 

[Malacoesa]

Thank you all for the words and support.

Tomorrow I will get my Remicde and the professor treats the wound with a bandage wich is inserted into the deep end of the tract.

Stoma for me wont work I will hate it. I really wouldent care what other people think of me with a stoma. But I dont want a stoma. Also I have a completely ''clean'' bowel. The hole true my anus is very tiny i have no pain when i go to the toilet. The abscesses and fistula tract is outside of the bowel. So it would be ''a waste'' to remove healthy tissue in order to heal abscesses and fistulas outside of the bowel and anus.

During the 18 years that i have Crohns i have had te deal with alot of discomfort, meds, disease activety, surgery etc etc. These tracts that I have now are really dramatecely huge and wont heal. Im going to write the Mayo Clinic they are the nr1 with Crohns. Hopefully they have an idea about treatment.

The advise about stopping the remicade treatment is a good one, i will ask my dokter about this!

Hopefully you guys and girl are doing well. If i can help with advise you can ask me.

 

[Jennifer]

I've heard nothing but good things about Mayo Clinic Malacoesa so I hope they can help.

Many of us have dealt with this disease for a long time and I think most of us do not want a stoma and want to do everything we can to prevent it if possible. I joined the forum a few years ago and was terrified of possibly having a stoma some day. I've talked to many people on the forum over the years and I've found the most up beat people on here are the ones with a stoma. After reading Nyx 's posts I no longer feared the possibility. Talk to other members about it and read their posts so you can at least try to come to terms with the possibility.

 

[kiny]

hopelijk voel je je beter binnekort, in belgie zijn ze minder te vinden voor operaties dan in nederland wat goed is, veel mensen komen van nederland naar belgie. Ik weet echt niet als een hospitaal in America veel gaat helpen, ze zijn vaak zover achter in America, zeer veel operaties worden er gedaan in America in vergelijking met Europa.

hope you feel better

 

[Mark in Seattle]

Malacoesa, it is my understanding that Dr. Sandborn now works in San Diego, CA. I believe he left Mayo about one or two years ago.

Here are a couple of links for Dr. Sandborn if you are really specifically wanting to see him:

http://gastro.ucsd.edu/people/Pages/Sandborn.aspx

http://doctors.ucsd.edu/Details/11868

I've been to Mayo in Rochester, MN one time. It was a positive experience. I consulted with a different doctor though, not Sandborn.

Can you call Mayo, rather than write a letter to them?

 

[Spooky1]

Malacoesa, just so you know that not everyone is ganging up on you i thought i would tell you that my mum has had a stoma for 40 years. I also agree that if it doesn't work then the invasive surgery might also enhance the chances of crohns getting in the area of the scalpel. But i do understand you. how's the diet for your crohns? Are you also on vitamins? I really wish something would help. good luck with remicade, others have recommended it.

 

[Malacoesa]

I want to say thank you to all your posts. Every idea is very helpfull for me! Also the while concept that i am not alone in this.

Curre tly i am on vitamins, i have visited a specialist in belgium who tested my blood and put me on the right supplements and vitamins. Are there any specific vitamins that you would reccomend me to take?

My friend will write the mayo clinic but also call. All the energy i have i have to put in my work. I am owner of two webshops and am fighting to keep the shops "alive" and make a living. The links im going to look to them right now!

 

[tots]

I started taking vitamin D,and B12,calcium and vitamin C. Those alone have helped a lot.
Thanks to David's reminders in his posts I finally had my vit levels checked.

After reading this thread, I have learned many of our posters are wise beyond their years!
And are very compassionate people. Even if I have not posted they inspire me through what
they post to others.
This is not something I am very familiar so please take this question as sincere. I thought
a fistula started..
in the bowel and worked it's way through the lining . Am I very far off base?

I hope that at least one of theseposts offer you a a glimmering hope and light at the end
of the tunnel.


I hope you get relief soon! (please pardon the typos- trying to get used to this Kindle- so far score one for the tablet . Zero for the operator!)

lauren

 

[Spooky1]

HI, all, sorry i put a non supportive sentence in my response. certainly no offence meant.

@Mal, i should have sent you to a thread on this site which talks of the bionic bottom. they put wiring into the anus and you use a remote control to open the anus up to go to loo. a lady on this site has had it and says its working well and it was also in the british papers recently as a man had this done. its an alternative to ileostomies, and possibly the way to go in future, as i'm sure it would save the nhs healthcare a lot of money in stoma supplies. look it up.

hope things are getting better for you.