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Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 9/19/2009 1:17 AM (GMT -7)   
Had my GI appointment yesterday. I am at exactly the point I was 3 months ago.
Back on anti biotics as I have another abcess making it's bid for freedom (seeing the surgeon next week) and another patch of external ulceration (apparently not uncommon??). No doubt another seton will be needed.
Back on pred because of the setback I had 2 weeks ago on holiday, (taken unwell in the Louvre museum, and feeling generally unwell all week), resulting in cutting the hoiliday short and paying a fortune to come home early.
Barium follow through has been scheduled, they have finally decided that they need to completely rule out Crohns as I do not fit a UC picture. Unfortunately I only had a flexi-sig initially, so I guess I have the joys of a colonoscopy coming too.
My bottoms sore, my tummy is rumbling and all I want to do is eat all of the things on my not allowed list devil
But I wont, I have one more more chance to stay well after the pred or they'll start pushing the azathioprine, and I certainly do not want that.
Hoping everyone is well. BIG HUGS.

Debbie. x
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. (awating further tests to rule out Crohn's).
?2 fistulas, seton fistulotomy july 2009, 2nd fistula ?currently dormant.
Currently taking, 1200mg asacol TDS, 1g Pentasa supp, Probiotics, zinc supplement.
Prenisolone restarted 8th sept, for urgency, tapering dose.
Low residue diet, under the supervision of a dietician.
Past meds: prednisolone, colifoam ememas.


Sofee
Regular Member


Date Joined Sep 2009
Total Posts : 90
   Posted 9/19/2009 1:30 AM (GMT -7)   
My bottom is sore too, and my tummy rumbles like crazie all the time. And loud, sometimes its so loud it wakes me up at nite. sounds like me and you have a lot in common. I may have a fistula or fissues. I hope its nothing too serious. We must keep in touch.

Take Care. I gotta try and get some sleep its 2 in the moring here.

Chat later.
 
Sofee
praying for a good night's sleep and a happy bottom!! :o]
1998: Colitis - removal of colon, temp. ostomy 10 mths.
2000-07: disease free & doing well with j pouch.
2007-09: rectal pain & discomfort, loss of bowl control. diagnosed with Crohns March '09 currently on: Emtec, Azathioprine [Imarun] & Remicade. Med History: steroids, predizone, cipro, loperamide [imodium], gravol, previcid, cholestramine, xylocaine jelly, zinc oxide creme, etc.
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/19/2009 5:59 AM (GMT -7)   
May I ask why not take the Imuran? Many folks have had great success in getting their Crohns to quiet down with Imuran. And what about Remicade, I have heard this is really good in healing fistula's? It sounds as if you IBD is moderate to severe, and I think meds like those could help to get you feeling better. Just curious why not stronger meds, sounds as if you really need them.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 9/19/2009 8:44 AM (GMT -7)   
Ohhhh!! I hate abscesses! Just plain hate them. I am sorry you are going through this! Like Nanners, I am wondering if a stronger med could help you. I tried remi and humira but am allergic to both. I am on 6MP now and everything has calmed down and no side effects. I was in bad shape before!

Take care and I hope you can get it all taken care of very soon!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 9/20/2009 1:30 AM (GMT -7)   
I live in the UK, as far as I'm aware azathioprine is as far as we go, meds wise.
I don't want to have exhausted all of my treatment options this quickly, especially as they are still not sure what we are dealing with.
I think the fact that I'm only 30 and haven't had any kidlets yet is making me more cautious than perhaps I should be?
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. (awating further tests to rule out Crohn's).
?2 fistulas, seton fistulotomy july 2009, 2nd fistula ?currently dormant.
Currently taking, 1200mg asacol TDS, 1g Pentasa supp, Probiotics, zinc supplement.
Prenisolone restarted 8th sept, for urgency, tapering dose.
Low residue diet, under the supervision of a dietician.
Past meds: prednisolone, colifoam ememas.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/20/2009 1:40 AM (GMT -7)   
Don't worry, Sore Tum, you do have more options than Azathioprine in the UK :-).

If you scroll back a page or two, you'll find a thread about Infliximab (Remicade) and Adalimumab (Humira) in the UK. You might like to talk with some of the other British people who posted on that thread, and work out exactly what your options are.

All the best,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 9/20/2009 1:53 AM (GMT -7)   
Thank you.
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. (awating further tests to rule out Crohn's).
?2 fistulas, seton fistulotomy july 2009, 2nd fistula ?currently dormant.
Currently taking, 1200mg asacol TDS, 1g Pentasa supp, Probiotics, zinc supplement.
Prenisolone restarted 8th sept, for urgency, tapering dose.
Low residue diet, under the supervision of a dietician.
Past meds: prednisolone, colifoam ememas.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/20/2009 6:29 AM (GMT -7)   
Sore Tum many of the same meds used in Crohns are used with UC. I really think you should talk to your doctor and start on stronger meds. There are many new moms on this forum who have used Imuran, 6mp, Remicade and Humira while pregnant and delivered healthy babies. Some had multiple babies while on these meds. The only one I can think of off the top of my head you can't use while pregnant is Methotrexate. Hope that helps some.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 9/20/2009 11:32 AM (GMT -7)   
I have another appointment with the consultant at the end of October, they should have all of the test results back by then. I had a good chat with her junior this week and he said that the way I respond to the pred indicates that I would probably benefit greatly from having my immune system 'dampened'.
The last time I came off of the pred I had surgery within a close time and also had to stop the suppositories, so we are not sure if it was the withdrawal of the pred, supps or the surgery that had caused the gradual decline back to this point (I'm hoping it was the supps).
The rectal meds have also been doubled, I'm crossing everything now that when the pred course is finished that the supps will be doing their job. However he did say that the asacol should be working be now and it doesn't seem to be doing much and the supps are the same medicine.
It's very dificult as they introduce and change so much so quickly that it can be difficult to pinpoint what is working and what isn't. I also think I'll be added onto the list for surgery again this week.
Happily, however, I smile alot when I'm on the pred, so everyone thinks I'm ok. :-)
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. (awating further tests to rule out Crohn's).
?2 fistulas, seton fistulotomy july 2009, 2nd fistula ?currently dormant.
Currently taking, 1200mg asacol TDS, 1g Pentasa supp, Probiotics, zinc supplement.
Prenisolone restarted 8th sept, for urgency, tapering dose.
Low residue diet, under the supervision of a dietician.
Past meds: prednisolone, colifoam ememas.

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