What is going on?

[Kat671]

what is going on?

In 1987 when I was 10 I was diagnosed with UC. In 1989 I had my colon removed. In 1990 I had my reversal. Forever after my jpouch has been inflammed but not until the last 5 years has it been a bloody severe mess! I have been lucky enough to get into see some really great doctors in my life. Unfortunately not a one is hope skip and jump away....but 5 hrs is bettter than some options I realize!!! Ok so with local doctors I am very frustrated and upset because I get told, "nothing is wrong with your pouch", "just remove the pouch", "I can't help you", "if your pouch is inflammed you have Crohns, you don't want to have Crohns so stop thinking this" "your pouch has ulcers and very inflammed but this isn't my area" I am so sick of the lack of help that I do not have a local gastroenterologist that I trust.

I just went to Mayo Rochester MN that is where I had my original surgery last week and talked to my doctor about my test results today. Biopsy results say possible Crohns definate pouchitis. But at the moment there is the interefance of Cdiff interfering. I don't believe I have had this long so I am giving it little value but well my instincts only mean so much. Of course when I see experts they suspect Crohns often since I have a few signs besides the Chronic and now severe pouchitis. A severe pain at my stomach is one....and my pouch is prolapsed so that pain is so much lower!!

Current treatment: Asacol 1600 MG ED 3 times a day for about 9 years
Allopurinol 100 mg once daily—inflammation in pouch (about a 3 years), Cortifoam 10% Aerosol SCH 2 times a day–inflammation in pouch (about 3years)
canasa 1000 mg 1-3 a day—pouchitis (3 years over a month on at least 2) Cortifoam 10% Aerosol SCH 2 times a day–inflammation in pouch (about 2 years)
VSL #3 225 billion bacteria 6 a day(6 years)

I must admit with this much I am not perfect at taking it and I am multi diseased so diet may also be an issue but I am still bleeding daily and in a lot of pain.


sigh! Anyway, this is just an introduction....I wish I knew where I fit!

 

[Paladin]

Good to hear from you, we care and want to see your story thru and maybe learning something along the line.

We all remember the tests, the pokes, the stabs, referral from GI guys to nutritionists to arthritis groups. Hundreds of exrays and nuclear medicine
that one had me set off nuclear detection security systems in downtown
Toronto (I could imagine the press: Al Kaida using jewish crohns guys to defeat sexcurity forces).

Doctors range from the very good to 'how in hell did he get someone to pass it for him?"

How's your pain? Social life?

 

[Angrybird]

Hello and welcome to the forum :bigwave: I am sorry to see that you are having a hard time finding a local doc that you can trust and get a proper medical response from. What did the doc say with regards to your current treatment regime and the bleeding/pain and perhaps looking at your diet? Perhaps have a look at our diet and supplements forum to start getting an idea of where it needs to be looked at? I am glad you have decided to join us and hope that you will find the help and support you need :hug:

 

[rygon]

Welcome to the forum, so bad you cant get any help locally, 5hrs drive just to see someone who has a clue of your problems is not on. Hope the C-diff goes away soon so they can get down to the cause of your problems

 

[Kat671]

Thanks for the responses!

How's your pain? Social life?

My pain scale is going up lol I would rate my norm about a 5 at the pouch area and when my stomach puts me through pain it tends to be a 5-7. Social life--hmmm I am disabled by my multiple health problems. I am happily married and my husband and I have a successful online business but other than my support system, family, Church, and some neighbors I don't have much of a social life that isn't cyber...not to complain I make the best of a difficult situation and I am not unhappy with life.

What did the doc say with regards to your current treatment regime and the bleeding/pain and perhaps looking at your diet? Perhaps have a look at our diet and supplements forum to start getting an idea of where it needs to be looked at?

Well my doctor trusts the doctor I saw before that was about 11+ hours away at Cleveland Clinic BoShen and he began a lot of it. I think he felt it was the beginning steps but unlike BoShen wants to get me back on to antibiotic treatment before we go to riskier things.
Very few think diet is likely to be much of an issue, getting me to eat something rather than nothing is a bigger priority. I am just concerned about blood thinners for my migraines which are multiple every week....I am trying to change that working with my Neurologist to find a way to prevent them! I am pretty good with food but not very good with drinks....avoiding caffeine is very difficult. I have lived with IBD in some form or another for over 20 years so docs tend to think by now I should know what bothers me. I am not sure that is accurate but that is the thought process they have.

Are there supplements you recommend? I will try to take a look at what you are suggesting but a link would really help!!

I hope everyone is having a good day!

 

[Angrybird]

Hi, see if this works: http://www.crohnsforum.com/forumdisplay.php?f=17. This should take you to the forum where you can have a look at what others eat etc and perhaps post a new thread about what you can look at. It is hard to figure these things out and I find that foods that bothered me a few years ago don't now and that foods I was fine with now bug me (beans )

 

[Kat671]

Thanks a bunch! Now I know why no doctor is telling me what to eat lol I am suffering so much today I am back to that kid that just had her colon removed and couldn't leave the hospital after an additional emergency surgery to repair the perforated ulcer in my stomache...I wouldn't eat. Now I am trying but I hurt!!!

Thanks for your help!