Scots newbie!

[jarsek2000]

My name is Jim Robin and I'm from Glasgow, Scotland (UK). I am 49 years of age.

I discovered this forum some time ago but never made any contribution, possibly due to my state of mind at the time. But here I am now!

I was firstly diagnosed with Ulcerative Colitis in early 1990. The symptoms at the early stages was quite severe and very painful. One of the biggest problems and the main reason that I suffered so much was the length of time it took to reach a diagnosis!

Anyway they eventually prescribed a drug called ASACOL and the disease went fairly quickly into remission and apart from very minor flare-ups now and again I have been in perfect health (for 14 years!). Then some time in 2004 I started passing a puss-like substance that stained my underwear. There was no pain or even discomfort. I started sticking tissues between the cheeks and just got on with my life, thinking that it was just the colitis.

Co-incidentaly I was suffering very bad joint pains but I had no idea that there could possibly be any connection. I just thought that on top of everything else, I had arthritis! The doctor prescribed an NSAID which had very limited effectiveness if any.

In July 2005 I developed a very severe 'blockage' when trying to push things down and out. I was on holiday (vacation) at the time. This caused severe pain and when I finally got 'cleared', was left in a LOT of pain and I still had a long distance to drive home! God that hurt.

I continued with my newly gotten job as a mini-bus driver but besides the pain I was always sweating profusely even when it was cool. Finally my boss insisted that I go and see my GP. The GP referred me to hospital the same day as an urgent admission- ironically not because of the Crohn's or its symptoms, but because she thought that I had over-dosed on painkillers! That day was the end of my new job. I was gutted.

The hospital checked me out and it turned out that although I had not overdosed, they DID want to know why I was taking so many painkillers. Then I got an MRI scan and the consultant surgeon at the Victoria Infirmary in Glasgow recommended that I have a colostomy to allow the rectal to 'rest'. This is the point at which the diagnosis was changed from UC to Crohn's. It is still unclear whether the original diagnosis in 1990 was incorrect OR if the disease had somehow mutated.

I had the colostomy operation and now I'm on 25mg Methotrexate taken once a week and an antibiotic called Ciproxin, plus the highest dosage allowed of co-codamol 30/500. I have also recently started treatment on 'Infliximab' (sometimes known as Remicade).

The Infliximab has certainly completely cured (or apparently so) the arthritis and I have no joint pain at all now thank God. The profuse sweating has also gone away but I still suffer considerable discomfort around the area of the coccyx so sitting is always sore.

I have had what are called "Seton cords" inserted into my backside that are supposed to help drain away the constant flow of puss. There is also a fistula down there. I have to put sheets of paper towels down my underpants to collect the stuff and have to change them often. There is also a bad odour from this stuff so I have to try to mask this with a sprinkling of aftershave!

I take the maximum dosage allowed of Co-codamol which I have to say is very good.

My spirits are often very low but I don't like to use the word "depression" I do try to remain positive but it's hard. I lost a job that I really loved and now all I have is a meagre Incapacity Benefit. I have also gained a huge amount of weight and I drink too much to forget about it all. I used to be very fit and active and now I just lie about the place and feel sorry for myself. It was only 3 years ago that I did a fifty mile charity cycle from Glasgow to Edinburgh. I can hardly believe that it took place myself now.

My consultant is very pessimistic about reversing the colostomy as he reckons too much tissue has been damaged by the disease.

I hope that I have not been too graphic in my resumé and I'd love to hear from others.

Best wishes,

Jim

 

[Jeff D.]

Welcome to the forum. Sorry I am going to sleep so I did not read through the whole thing. Best of luck.

 

[KCMike]

Hello Jim

I'm sure I can speak for many of us on this message board. A lot of us ask ourselves - Why did this have to happen to me? It seems unfair that some people never have any health issues and some of us are dealing with pain and misery on a daily basis. We have every reason to be depressed. But, from what I've seen after only 1 month here on this forum is that the people here are fighters. They are very a caring group and are very unselfish. We all hope there will be a "cure" someday. So come on in and join the party!

 

[kix66]

Hello Jim - glad you felt up to posting hope to see more from you in the future. Question for you, have you discussed taking anti-depressants with your doc's.. I am on them, have been for a few months now and I see a big improvement overall. I get Remicade every 8 weeks and usually by the 4th week I was having trouble, where now I'm good till the 7th week. Heck any improvement is great in my opinion.

Hope you have a wonderfull holiday season!.
Take Care,
Kathy

 

[Nancy Lee]

Hi Jim!

Hi Jim...and :welcome:

Sounds like you have had a very rough go of it..
But, you have come to the right place for support
and probably will find a lot of answers to your questions.

I have Crohn's as well and am on Asacol..
also this disease does tend to bring one down
and I am taking an anti-depressant.

Please relax, we're all in the same boat..read in the forums
and add your thoughts whevever you like.

Once again,
Welcome....
Hugs~Nancy

 

[devildee(donna2005)LOL]

Hi Jim

:welcome: to the forum im sure you will find it a great source of information and support, thanks for sharing your story

 

[ruthymg]

Hi Jim, welcome to the board. I wanted to share my story with you as there are some similarities between our stories and hopefully my story may make you feel a little better.
I am 32 and live in Yorkshire, UK. I was diagnosed with crohns in March 2001 after approx 6 years of symptoms which gradually became unbearable. I was told that my disease was quite advanced as the diagnosis had taken so long and had required me to see my GP for a second opinion after my faith in my GI at the time disappeared.
Anyway, I had about 18months of terrible symptoms and numerous hospital stays and eventually I went into remission. The remission lasted for 3 years and during that time I had no symptoms of my crohns but I did have an anal abcess. That abcess was surgically drained and I had to have it packed with dressings for about 6 weeks. It took quite a long time to heal as it was nearly 6cm deep.
In Sept ish 05, I started to flare again and this time although my crohns symptoms weren't too bad as the medication was working at the time, I still had problems with anal abcesses (or thats what I thought they were anyway). I had taken steroids previously before my remission period and they seemed to help so again I started steroids. I was already taking Pentasa and Azaithioprine/Imuran. I was also given a couple of antibiotics that didn't seem to do anything. Eventually I went in through A&E with the pain from the abcesses and was admitted. I had a seton fitted and 5 days later was discharged. This seemed to do the trick for a while but everytime I was a little loose, the swelling would come back. I had an MRI scan and the scan showed that I had in fact gor several complex anal fistulas that were joining my small bowel and rectum together. Makes no wonder I was in so much pain!! Anyway, again I had 2 more setons fitted. By now these were becoming quite irritating, I could feel them all the time as they were in a sensitive place. After 2 weeks 1 of them fell out!! I then went for a clinic appointment with the surgeon and he had looked at my MRI closely and decided that I needed more surgery. So in June this year I went in for a right hemicolectomy, a bowel resection and a loop illeostomy. Basically I had the Illeum removed along with some more of my small bowel, part of my large bowel and a stoma fitted. This was to help my rectum to heal as it was a mess at the time. I was also told that if the fistulas didn't heal I would have to consider having my rectum removed or to have a permanent stoma. So now to the more positive bit, sorry if I'm dragging on a bit, After 6 months the fistulas have almost healed. I have just had another MRI and am waiting the results to see whether I can have my stoma reversal op. I remain quite positive, the pain has gone and there is only a slight swell occasionally in the area now. I am also due to start Infliximab and Methotrexate. I was really dreading having a stoma but knew that it was my only option if I was to get better, now I'm glad I did it. Don't get me wrong, I don't like it but it has made life more bearable. So what I'm saying is give it time and hopefully thinmgs will start to look up for you. I also take anti-depressants by the way and they have been great. Don't feel you have to suffer, ask your doctor about medication to help lift your mood a little. You've had a rough time, take the help thats out there, you deserve it.
The other thing I wanted to mention is that, the pus you describe has an odour when there is still active infection, hopefully the Infliximab will help cure the fistulas. Its supposed to be very good for them, which is why I am due to start it too, mine will be as along term treatment though.
I know exactly how you feel where the fistulas are concerned, not only are they extremely painful but they are literally a pain in the ass what with the pus, odour and swelling. I too had to find ways to "catch " the pus that was draining away. A little easier for women I suppose as we can wear sanitary towels. Maybe some dressings from your doctors might help keep the wet away from the sore areas better. I hope this helps you feel a little better, there is a light at the end of the tunnel, its just somtimes that tunnel is extremely long. You will get there in the end. Keep your chin up and keep us posted on your progress.


Ruth

 

[jarsek2000]

Hi Ruth,

I was so blown away with your response I think I read it three times over. Unfortunately it is very late now as I post this response and so I cannot possibly do fair justice to the warmth and empathy that was contained in your reply.

In the meantime (and I SHALL reply later), thank you so much for sharing your experiences.

Season's Blessings,

Jim

 

[jarsek2000]

Thank you Donna! Appreciated )

 

[jarsek2000]

Thank you Nancy!

 

[jarsek2000]

Hello Jim - glad you felt up to posting hope to see more from you in the future. Question for you, have you discussed taking anti-depressants with your doc's.. I am on them, have been for a few months now and I see a big improvement overall. I get Remicade every 8 weeks and usually by the 4th week I was having trouble, where now I'm good till the 7th week. Heck any improvement is great in my opinion.

Hope you have a wonderfull holiday season!.
Take Care,
Kathy

Thank you so much Kathy...

I cannot consider taking anti-depressants at this point in time. It is perhaps paradoxical that the reason for this is my attention to the use of alcohol at the moment - not a good mixture.

 

[skeet]

Aloha Jim and welcome to the forum. Sorry I've not been here much lately & failed to put out the welcome mat upon your arrival.

Jim, dont' ever be afraid to share what's going with you, whether physical or emotional, in these forums. That's really what this place is all about. Nothing you can say will shock us or cause us to not respond. We all have a lot of ickiness that we deal with, and one of the ways we deal is by sharing it here.

I won't jump on a bandwagon about being unable to take anti-depressants because of your alcohol intake. Good decision. You know what you need to do. I hope you'll do that soon!

I'm lookin gforward to getting to know you better. Find a comfy chair & stay awhile!

 

[DannyB]

Hye Jim

Welcome to the forums

 

[jarsek2000]

Aloha Jim and welcome to the forum. Sorry I've not been here much lately & failed to put out the welcome mat upon your arrival.

Jim, dont' ever be afraid to share what's going with you, whether physical or emotional, in these forums. That's really what this place is all about. Nothing you can say will shock us or cause us to not respond. We all have a lot of ickiness that we deal with, and one of the ways we deal is by sharing it here.

I won't jump on a bandwagon about being unable to take anti-depressants because of your alcohol intake. Good decision. You know what you need to do. I hope you'll do that soon!

I'm lookin gforward to getting to know you better. Find a comfy chair & stay awhile!

Isn't the Internet a wonderful thing? I have been able to share stuff with so many wonderful people from far flung places. Hawaii? Geeze - what I'd give to be there now!

Today was the shortest day and in Scotland (about the same latitude as the frozen tundra in northern canada). So, from now on the days get longer and the nights shorter!

I am a fairly happy person tonight for two reasons.. first I went out into Glasgow City Centre and had a drink (or two) with an old friend - someone who I have not seen for years and second - when I got home I read the responses to my intro and I was really really touched by the warmth and welcoming spirit contained in the responses.

I think that it's going to take a while to get me head around all of this. It's like I was falling from a great height and now all of a sudden there is this big bouncy safety net catching me.

Best wishes,

Jim

 

[Nancy Lee]

So good to hear you feel that way Jim!
If you ever need us someone will be here...
and not to worry...we'll always catch you!

Hugs~Nancy

 

[ruthymg]

Glad to see you're feeling a little more positive Jim, thanks for your comments, will chat soon.


Ruth

 

[Cara Fusinato]

Welcome. Hang in there. You've been through a lot. We are all here for you to vent to and talk with. Blessings to you that in time there will be a way to get it under control.

 

[meapache]

Hi Jim,
My name is Sam and i joined the forum because my daughter monica has crohns, she thought she had a hemmeroid, he did a lasor treatment and the site got worse so he sent her to a surgeon who cleaned a packed the area, she was given some strong painkillers, 6wks it should be healed, nope, still lots of pus and smelly (infection) so she was sent to the next doctor who told her she had crohns and her colon and rectal area were so imflamed, the medications weren't helping, except for the painkillers, she was popping them like candy, which was upsetting me, because my child wouldn't take an aspirin before, a friend of mine suggested i ask about remicade which is expensive, she said monica would have to be hospitalized first because she now was very sick and in so much pain stomach and fistula and tests had to to done first, i put my foot down and she let me admit her to Cornell Weil, she had to wait almost 14hrs in a cubicle, hooked up to IV's of blood, MRI was done, she had a week of tests for everything she had lost 70lbs in 4mos, then came the operations the (hole) fistula area was scraped to remove all dead skin/bacteria, illeostomy was done, to give her rectal area a needed rest, it was supposed to be reversed in 3mos but, because it's taking the fistula so long to heal, she's looking at maybe 10-12mos, but you know what she's ok with that, she was on remicade until she got a reaction, now i give her Humira injections weekly, 2-325mg iron pills, mangosteen juice daily,changed her diet, gained some weight back, she traveled to texas from NY, a year ago today she couldn't hold water/juice down..So hang tough it's gonna take time. Happy Holidays from New York City

 

[jarsek2000]

Too much alcohol???

I had a little chuckle to myself upon clicking on members' profile and being redirected to the "zoints" page! This is what it says up at the top....

I want to meet some people with Inflammable Bowel Disease and Crohn's Disease Forum!

Cheers!

Jim

 

[Karen]

Welcome Aboard ... I am sure that you will have a great time here and you will make plenty of friends too so jump right in and have some fun & do come by the longe sometime and say HELLO !!