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Crohn's Disease Forum » Your Story » Congratulations all


05-09-2012, 03:26 AM   #1
DD2020
 
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Congratulations all

First of all, congratulations on creating and maintaining such a warm and big support group, came to learn of many things during the last 15 days I have been exploring the threads, thought it's best to join also and say hi to all.

I am 40 y/o male from Mumbai, India, suffering from CD/UC with colocutaneous fistula for last 1 y 3 m. During the first BIG attack/4 times hosptalisation/tests, doctors gave 50%CD/50%UC as biopsies were inconclusive/ mentioned general terms like severe active colitis. Later colonoscopy during remission fared no better, but two different GIs I met later said it's more like CD after hearing details and seeing reports. The fistula I have is bit rare, but my past medical history helped a great deal in its' formation. "Colocutaneaous" fistula means the one formed from the colon to straight to the abdominal wall. I had an accidental rectal injury 12 years back, doctors had to make a temporary sigmoidal colostomy to let the rectum heal. It was closed after 3 mths that time, although I developed some infection there, took 1 more month to heal. During the last years introductory BIG attack, this CD fellow, famous for his tendency and ability to develop fistulas, promptly developed a good one through the scarred tissue. Good one because it is now a full-fledged colostomy only, only naturally formed. Output via colostomy bag is 20% during remission, becomes 50% during minor flares, and has become 80% now as I am having my first major flare-up for the past 45 days.

Medications are 3X3X400mg mesacol, 100mg azoran, 10mg prednisolone, folic acid, calcium. During current flare up predni was increased to 20 mg, then 30 mg for last 15 days, entofoam enemas, neksium/pentaprazole 40mg. CRP/ESR all up up and away, both lymphosite & neutrophills showing absolute ZERO. Some good signs like fever/joint pain/blood reduced last 5 days. Hope this gets over in 15 days/1 mth.

Does anyone else here have experience with colocutaneous fistula/ fistula directly to the abdominal wall? Please advise. GIs are hesitant about surgery, they are saying under normal circumstances it is a simple surgery to cut and join the colon and repair the abdominal wall, but with CD its a different game the fistula might redevelop during next flare-up/there might be complications during post operation period itself. They are saying its not urgent, you decide. Please advise.
05-09-2012, 07:26 AM   #2
Angrybird
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Hello and welcome to the forum. I cannot advise myself regarding your query about the fistula but do check out our fistula/abscesses sub forum as someone here may be able to help: http://www.crohnsforum.com/forumdisplay.php?f=76. I am sorry to hear that you are not doing well and the moment but will keep fingers crossed that things will improve for you soon.

All the best

AB
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
05-09-2012, 11:09 AM   #3
David
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Hi there and welcome to the forum, I'm so glad you joined I'm so sorry to hear of your troubles though My heart goes out to you.

As you look around here, you may want to search for "Enterocutaneous fistula" as that is what most who have fistula from the intestines to skin will call it here. You'll definitely find others with them in the forum Angrybird linked you to. And here's a good article in case you want some additional reading.

Again, welcome! I wish you all the best
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05-10-2012, 12:38 AM   #4
DD2020
 
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Thank you very much for your replies, AB and David. I will definitely give extra attention to fistula/abscesses sub-forum.

David the article you referred is definitely having nicely written wealth of information, bookmarked that. As I can see in the 3rd page of this article, Colocutaneous fistula is just a sub group of enterocutaneous fistula. As par your suggestion, I will be using the general term enterocutaneous fistula for mentioning in this forum or further search over the net.
05-10-2012, 01:29 AM   #5
Samboi
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Hi and welcome DD2020.
I'm interested in how you or your GI manages your low neutrophil count. This has been a feature of my CD for the past 10 years and not many other people mention it or seem to have it. Have they referred you to a hematologist? How is it effecting you? Do you get mouth ulcers from it?
I'm keen to find out what your experiences of it have been.

Cheers & thanks!
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Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Trying Vedoluzimab - running out of options
Neupogen
05-10-2012, 01:31 AM   #6
Angrybird
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No worries hun, please keep us dated on how you get on.
05-11-2012, 06:39 AM   #7
DD2020
 
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Thank you for your reply, Samboi. Infact, before I joined as a member, I had gone through your long thread giving each details of your condition post ileostomy. I am happy to know that you have overcome most troubles and are on the road to recovery.

I have not given any extra thought to the low neutrophills count. During my first attack also so many counts had become very high or very low, I don't think GI gave individual attention to each such count, they treated CD with IV steroid, IV ciplox and IV flagyl for some 10 days, slowly I went into remission, I remember after 2 mths or so blood reports were nearly normal. I just hope during this flare-up also it will be the same. I guess they will give extra attention to some particular count if it remains high/low over longer term even during relatively trouble free periods. In that case, I will inform you of the developments.
05-11-2012, 08:28 AM   #8
Samboi
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Thanks DD2020 - that would be super.
Keep us all updated with your progress.
05-11-2012, 10:51 AM   #9
sid
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welcome to the forum DD 2020. Feel really bad for you. I can see very few active Indian members here..I too joined this forum recently and must say that you are at the right place...there is a lot to learn about the condition we all suffer from. My prayers are with you. Hope you recover soon.
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No meds.
Diet as per ayurveda.
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Currently experimenting with Probiotics, starting 2016.
And a large joint mad family, thus stress cant touch me.
05-13-2012, 10:28 AM   #10
DD2020
 
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Hearty welcome to you too, Sid. I had gone through your thread before, as you are not showing much symptoms of CD currently I hope at some stage you become completely free of it. I will give you some real life statistics in this regard. I work in a large govt organisation, we have some small support group of 20 people suffering from mostly UC and some from CD. About 15 have symptoms no more than something like: in remission most of the time, three to four times a year they have mild flare-up: 4/5 times motions, no abdominal pain, no/very little blood, so they take (less harmful) steriod in enema form once or twice per day and become ok in 15 days. Medications: just mesacol 400mg 1X3 or 2X3 max daily. Here is the good news for you: atleast 5 are completely symptom free for last 5 years or more, out of which 1 for last 10+ years, 1 for last 26 years, all medications also stopped. So my conclusion is that majority are experiencing very little symptoms and out of this group some become completely free of it after some time. The same can happen to you also at some point of time.

For majority in this forum however, the story is slightly (atleast) more complex, we are driven by need, I also searched for more informaion only when I had the current flare-up, so people having moderate/severe symptoms do land up here. If all people having mild symptoms also became members in large numbers, the overall picture would have become more rosy/ you would have seen many more threads in the 'success stories' section. I think you should take heart from this and don't be terrified by seeing the threads. Ofcourse, keep taking the medications and bit of diet control always helps in most cases.

Last edited by DD2020; 05-14-2012 at 12:01 AM.
05-14-2012, 02:34 AM   #11
sid
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Hearty welcome to you too, Sid. I had gone through your thread before, as you are not showing much symptoms of CD currently I hope at some stage you become completely free of it. I will give you some real life statistics in this regard. I work in a large govt organisation, we have some small support group of 20 people suffering from mostly UC and some from CD. About 15 have symptoms no more than something like: in remission most of the time, three to four times a year they have mild flare-up: 4/5 times motions, no abdominal pain, no/very little blood, so they take (less harmful) steriod in enema form once or twice per day and become ok in 15 days. Medications: just mesacol 400mg 1X3 or 2X3 max daily. Here is the good news for you: atleast 5 are completely symptom free for last 5 years or more, out of which 1 for last 10+ years, 1 for last 26 years, all medications also stopped. So my conclusion is that majority are experiencing very little symptoms and out of this group some become completely free of it after some time. The same can happen to you also at some point of time.

For majority in this forum however, the story is slightly (atleast) more complex, we are driven by need, I also searched for more informaion only when I had the current flare-up, so people having moderate/severe symptoms do land up here. If all people having mild symptoms also became members in large numbers, the overall picture would have become more rosy/ you would have seen many more threads in the 'success stories' section. I think you should take heart from this and don't be terrified by seeing the threads. Ofcourse, keep taking the medications and bit of diet control always helps in most cases.
wow !! DD2020 ( whats your name BTW mate ) I think your post has given me a lot of confidence..and also a feeling that I can completely overome this desease. honestly I never gave tup the determination of completely eradicating this problem of mine ever since i got it (two weeks now). Initially i was scared, I still am but, I have accpeted it. I have spent a lot of time researching and knowing about this desease...I think I have noticed few things which I think is helpful for Indian especially under this condition.

we are more prone to direct sunlight. India /Hindus is majorly a vegetarian country/community..atleast more veg diet is included than red meat. Lot of herbs and spices in the diets. I dont mean Indians are not having CDor UC but surely they are less prone to the desease.

Other important thing is something I cant openly discuss on this forum..which I regret. as you might know Indians use so many other alternate medicines instead of traditional medicine for thousands of their problems. i had a word with an ayurvedic expert for this and he said , That he will cure this problem within 2years. I probed more on this to be sure wether he is sure about what he is talking about..amazingly he has cured UC patients in the past and knows almost all of the symptoms and effects of the desease. So will definitrly give our ancient ayurvedic medicine a try. An dofcourse then come Pranayam and other breathing exercise.No...not baba ramdev..lol..but I dont mind continuing it...ever since I faced the first symptom of CD..i started Pranayam and ashtanga yoga with a guru...the symptoms dissapred after 2 months..and am in remission since then..I was then diagnosed after 9 months , this year, while I was in remission..that too without any medicine but just diet changes and breathing exrcises like pranayam and yoga..and so far am still in remission.

I juts dont like the idea of having something incurable inside me. I have faced everything within this last two weeks from depression to acceptance. what scared me most was the thought of leaving my parents in a bad situation. Thus they are not informed about this yet..and am determined I'l never let them come to know about this.

But man..I must thank you...your post has really excited me a lot...and feeling so much more confident in my resolve to defeat this desease..I know most part of this post of mine might have bored you..but I think I had to share this with someone who could actually understand when i talk about the serious alternative medicines like pranayam and ayurved. I pray for your good health man.
05-14-2012, 11:31 PM   #12
tots
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Welcome-
You are right on target! This place can be what holds you together at times.

You will learn more here prob than anyother place!

Good luck!

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
05-15-2012, 01:33 AM   #13
DD2020
 
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Thanks a lot sid and lauren for your replies.

@sid: best of luck with yoga/pranayam/ayurveda, it might actually work, also, it gives your inner soul a lot of energy while you are practising it. Among my friends/relatives, we don't have experince of ayurveda, but many of us have got some astonishing results from homeopathy. However, till now for this disease I have not approached any doctor as I was not sure how successful homeopathy is for UC/CD.

I request all of you to share your experience with homeopathy if you have tried it.
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