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04-18-2016, 02:23 PM   #1
DEmberton
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To Aza or not to Aza.

That is the question.

Since surgery in July 2014 they've been threatening me with Aza, but my symptoms haven't been that bad so nothing has happened. The follow up colonoscopy after a year showed some ulcers around the TI join, and after that I was given Budesonide (Entocort) and then told to come back in 6 weeks to start the Aza.

Except after the 6 weeks the consultant said that it wasn't really black and white that I needed it and that we could wait and see if symptoms got worse again once I'd finished the course of Budesonide. I'm in no hurry to take horrible drugs unless I absolutely need to, so agreed.

I'm seeing him again this week. My symptoms again have not been too bad. I've had periods of having normal BMs, but then things get a little worse and I start having loose stools, but only once or twice a day, and occasional but pretty mild pain. I know a lot of you have it a lot worse.

So I need to decide. I had at least 18 years of no treatment after having been told it was IBS before things got bad, so does that suggest I can get through another 18 years? Not sure.

Should I continue to suffer the slings and arrows of outrageous fortune, or take Aza against a sea of troubles?
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Diagnosed May 2014
20cm Terminal Ileum and Ileocaecal resection July 2014
125mg Azathioprine
04-18-2016, 03:08 PM   #2
ronroush7
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Both Crohn's and UC are known as invisible illnesses. I would say that, if that is what the doctor wants, that you give it a try. You never know what could be going on inside your body. Keep us updated.
04-18-2016, 03:28 PM   #3
worriedboy
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The drugs cannot promise you anything, but, it's the only statistics-based treatment we have got nowadays.
If drugs can help you achieve mucosal healing, that could help you avoid further surgery, or at least postpone it.
If you feel you can manage through diet and lifestyle, please keep an eye and make sure to be closely monitored, so if things start going downhills you'll be able to catch it on time.

Feel well !
04-18-2016, 08:44 PM   #4
Layla
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I'm similar to you in a way, I was without meds for around 20 years until I needed a resection. My GI said if I was lucky it would take that long again before the next surgery but there are no guarantees that it would work that way.

I've been on Humira for a while now and a recent colonoscopy and MRE showed 30cm's of inflammation and 2 strictures that needed dilation. This was just over a year after the surgery so really really quick compared to previous years. I won't need surgery just yet but I'm certainly going to continue to find a med that will keep me in remission to prevent another surgery as long as possible.

Aza didn't work for me but I think is considered as a medium level drug when it comes to side effects etc so if you're still having ulcers it may be a good idea to try it.
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Layla
Diagnosed with UC in 1994, CD in 2014, "IBS" in between
Lactose intolerant, IgA deficient and Arthritis.
Resection due to strictures in 2014
Currently taking: amitriptyline, zinc, multi vitamin, b12 shots, Vit D, B complex, magnesium, calcium, Psyllium and the occasional iron infusion, probably sarting a medical trial soon

Previously on Remicade, Humira, Prednisone, Azathioprine, MTX, Pentasa, Asacol, Salofalk
04-18-2016, 11:39 PM   #5
aypues
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I'm going back on 6-MP after a long time of being on just Entocort. I had a very low serum ferritin level in addition to extremely low iron levels, and a low albumin so we decided to do a MRE exam and it showed my small intestine was very diseased with multiple strictures. Funny though, I don't really have much pain. Now we are going to do combination therapy 6-MP with Humira.
04-20-2016, 11:46 AM   #6
DEmberton
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So the story is I have some more Budesonide and some Aza (150mg), and he's going to let me know the result of the CRP test and tell me whether or not to take the Aza. Based on the last few results it seems unlikely the CRP will be normal.

Seems reasonable.
04-20-2016, 10:23 PM   #7
Lady Organic
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So I need to decide. I had at least 18 years of no treatment after having been told it was IBS before things got bad, so does that suggest I can get through another 18 years? Not sure.
I would take AZA right away. Long term chronic inflammation is really risky for complications.... You prefer to stop the damage in your intestine right away and keep the remission under full control as long as possible whatever the means. wishing you well!
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
04-21-2016, 12:18 AM   #8
aypues
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Lady O, in your signature it says you failed Imuran but had success with 6-mp. Aren't they both the same drug once the body breaks Imuran down to 6mp?
04-24-2016, 01:43 PM   #9
Tuff
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From what I've read, Imuran is the more toxic of the two. I had a lot of nausea when I first started it.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
04-24-2016, 11:54 PM   #10
luDena
 
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Good luck!
I am on 50mg. of Azo I have been for 11 years. I can't tolerate a higher dose.. Entocort never worked on me. Use prednisone a lot. Dr. Wants me on humira but afraid of it. It is nice not to be the only one Leary of the drugs.

I get infections more easily while I have been on AZO other than that no side effects.
04-28-2016, 01:45 PM   #11
volleyball grandma
 
Join Date: Dec 2013
Hi All,

To start I have had Crohn's since 1964, had ileum removed, appendix. cecum, asending colon, and part of the transverse colon. Had 3 surgeries of the ileum resections. Was in remission for 28 years with no medicataion, but at the end of 2014 I started to have extreme intestional pain on the right side below the belly button that came on in waves and was going above my bellybutton . It would do this on and off until in March of 2015 I just couldn't take it anymore. I decidec to go to the ER not that I wanted to. Could take alot of pain but this was to much. I was naucious, vomiting this brown stuff that had a terrible stench. Had a NG tube put in and they gave me morphine for pain. Finally admitted me. Saw GI, and a Surgeon. Had surgery 6 days after all the tests. Resectioned small bowel and removed alot of adhesians. Now after surgery five months later still had extreme pain. Had a CT scan which showed a thickening and narrowing in the same area as my surgery. GI said surgeon only took out obstruction and diseased area. So I had more behind the area he took out. I know I had crohn's in other areas that the doctors years age wouldn't take out because they weren't that bad and had larger sections that were healthy.

Now it's 2016 and was on Pentasa 2/4xday since May of 2015 and that just didn't work. They say it doesn't work for Crohn's in the small bowel. I know it works better for UC patients. Went of Aza in November of 2015 and off of Pentasa January2016 didn't work at all.

I have been on Aza now for 5 months 50mg 1xday and I still have in the same areas and above the bellybutton, lots of diarrhea, at times cramps, and nausea. Had blood work done 4 days ago and got results Tuesday by computer. Doctor got his also. I don't go to see GI until June. When I called him they said blood work ok and he is not going to raise the medication. I don't know what to do. Can someone give me help.
ref. range:
WBC 8.0 3.4-10.8
RBC 3.96 3.77-5.28
Hem 12.9 11.1-15.9
Heato 38.3 34.0-46.6
MCV 97 79-97
MCH 32.6 26.6-33.0
MCHC 33.7 31.5-35.7
RDW 14.0 12.3-15.4
Plat. 279 150-379
Neu. 72%
Lymps 20%
Mono. 6%
EOS. 1%
Basos 1%
Neutrophils 5.8 1.4-7.0
(absolute)
Lymps 1.6 0.7-3.1
(absolute)
Monocytes 0.5 0.1-0.9
(absolute)
EOS 0.1 0.0-0.4
(absolute)
Baso 0.0 0.0-0.2
(absolute)
Immature 0%
Granulocytes
Immature 0.0 0.0-0.1
Grans (Abs)
Glucose 92 65-99
Serum
Bun 11 8-27
Creatinine 0.77 0.57-1.00
Serum
E GFR Non 80 >59
African Am.
Bun/Creatinine 14 11-26
Ratio
Sodium 140 134-144
Serum
Potassium 4.1 3.5-5.2
Serum
Chloride 100 97-108
Serum
Carbon 23 18-29
Dioxide
Calcium 9.1 8.7-10.3
Serum
Protein 7.0 6.0-8.5
Total Serum
Albumin 3.9 3.6-4.8
Serum
Globulin 3.1 1.5-4.5
Total
A/G Ration 1.3 1.1-2.5
Bilirubin 0.3 0.0-1.2
Total
Alkaline 63 39-117
Phosphate S.
AST(SGOT) 27 0- 40

IRON & TIBC

Iron Bind CAp 456 250-450
TIBC
UIBC 351 118-369
Iron 105 27-139
Serum
Iron Sat. 23 15-55

Vit B12 175 211-946
Folate >20.0 >3.0
(Folic Acid Serum) These I don't understand Iron and B12
Ferritin 68 15-150
Serum
C-Reactive 0.9 0.0-4.9
Protein Quant

Does anyone know how to read these. Am I ok?


Absolute

WBC 8.0
RBC 9.96
04-29-2016, 01:51 AM   #12
Catherine
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The dose rate seems really low. What your weight?

The white cell count seems high for someone on AZA. AZA works by lower the white cell count, the seem to work best when it about 4.0.

Iron number seem normal.

B12 is looking low. You may want to low a supplementing B12.

Have you had faecal calprotectin done?
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-29-2016, 12:05 PM   #13
aypues
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ya that Azathioprine dose seems pretty low, Volleyball. usually it is 2x what 6mp is, and I was on 50mg 6mp which was a low dose - normal for my weight is 75mg (weigh 157).
04-29-2016, 12:13 PM   #14
aypues
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probably need some imaging done (in addition to fecal calprotectin) to see if there is current inflammation going on in small bowel as well. your iron and albumin are good though, so it's probably not severe - if they were low your small intestine would probably be involved. maybe increase the AZA and/or go on a biologic to really tamp it down into remission.
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