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New Here. GI problems and AS- help? Advice? #211445 06/28/11 02:41 AM
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scouter99 Offline OP
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Hi, everyone. I just joined today and am so hoping to get some insight, wisdom and support here! Let's see- I have had JRA since I was 2 and have had periodic flares into adulthood- mostly affecting my knees and occasionally my ankles. I've learned to live with this pain, heck I've always had it since I can remember and was a 3 sport athlete in High School and have a workout addiction (well, until AS came along). I do get relief in between the flares (usually years with just mild annoying pain).

About 18 months ago I had a terrible issue with my back, which finally led to my rheumy thinking that I might have AS or Sacroillitis based on an Xray that was taken by my GP and the fact that I am HLA-B27 positive. It took me forever to involve my rheumy as I thought I had just injured myself so I went almost 2 months in pain before I called him (side note, the xray that was taken was read and I was told nothing was wrong, had a 2nd xray taken in the emergency room one night because of the pain I was in and THEY said they saw nothing. THEN, 1 week later I got a call that the radiologist re-read my xray and saw some inflammation near my spine and thought I should call a specialist. Nice).

Anyway- that cleared up pretty quickly with no real intervention, but then my GI problems started. As a side note, back pain and GI problems have been coming and going for me for years, but they generally have resolved pretty quickly and so I have never had to do anything about it. I have a pretty high tolerance for pain so I can generally power through things.

Anyway- back to GI. It got so bad that I starting thinking I had cancer (terrible bloating, gas, diahrrea, nausea, etc). Then Celiac Disease, IBS, you name it. Finally saw a GI doc who did a hydrogen breath test and dx'd me with SIBO (Small Intestine Bacterial Overgrowth). The treatment is potentially life long stints on antibiotics (Xifaxin, Cipro) because it doesn't usually stay gone. This was 4 months ago. I have been on 3 rounds of antibiotics and was pulling my hair out because I wasn't feeling better when suddenly, BLAMO- a terrible flare of 'AS'. I put that in quotes because I really haven't been officially dx'd yet.

SO- I called my Rheumy today (2 weeks after this started and now I can hardly stand the pain) and he started me on Sulindac to begin with and asked me to call him in 3 weeks to report on how I am doing. Blah.

Here's my dilemmma. Do I work on finding on what's going on with my GI problems now that it looks like I may have AS? I know Ulcerative Colitis and Crohn's are related.... do I not sit back with my SIBO dx and ask to be re-evaluated? I am just so sick and tired of going to doctor after doctor with all these symptoms and not being able to get a real answer, you know? Of course you do- it seems like everyone has suffered for a long time before getting a true diagnosis.

Thanks for reading my epic novel! Feels good to get it out.... I'm tired of complaining to my husband- he is wonderful, but I don't want to be the poor little sick one anymore!!

Denise
39 years old, married to the love of my life with 7 children between us (we have a FANTASTICALLY blended family, 3 hers, 4 his, 7 OURS!).

Re: New Here. GI problems and AS- help? Advice? [Re: scouter99] #211456 06/28/11 03:37 AM
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iviary Offline
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Hi Denise,

I also have chronic GI problems that came along with my spondyloarthropothy. Have you had a colonoscopy or any other internal imaging of your stomach/intestines performed, or is the hydrogen breath test all you've had? If you haven't had a colonoscopy and are still having GI symptoms, I would absolutely recommend you go back to the gastrointerologist. Even if you don't end up with an AS diagnosis, it would still be fairly normal to have another autoimmune/autoinflammatory disease join the fun of your JRA. Are you RF+, out of curiosity? It certainly isn't unheard of for psoriatic arthritis or other forms of inflammatory arthritis with peripheral involvement to get mistaken for RA. My PsA presented first in my hands as a teenager before I ever had any spinal/sacroiliac involvement.


Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol
Re: New Here. GI problems and AS- help? Advice? [Re: iviary] #211461 06/28/11 12:55 PM
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I would definitely recommend having a colonoscopy done- and make sure they check you for microscopic colitis as well as things like crohn's and UC. To check for MC, they have to do at least four biopsies. There is no way to fully know what is going on without having a colonoscopy. Good luck.


Coloradomom
Re: New Here. GI problems and AS- help? Advice? [Re: Coloradomom] #211482 06/28/11 04:27 PM
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Is Sulindac the only thing you are taking for your JA? It doesn't seem to be enough, considering all you are going through. I would call your Rheumy and ask that your arthritis(whatever kind it might be) be treated more aggressively. I think you might want to ask him about going to the TNF blocking meds.

If you are having GI issues, the Sulindac could be making it worse.

I hope you start feeling better soon.


Donna
Suffering since a teenager.Dx with AS Dec 2009. Dx with ulcerative colitis 1998, both knees replaced 2006. GP said I had "some kind of inflammatory arthritis" 25 years ago. It has taken 50 years to get a Dx.

Mobic, Nexium, Naproxin, Lipitor, 6-MP, Nexium, Miacalcam, MSContin and 2 Norco for break through pain
Re: New Here. GI problems and AS- help? Advice? [Re: avonldy] #211494 06/28/11 07:15 PM
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scouter99 Offline OP
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Thanks for the responses. I feel my JRA is pretty under control generally and have never been on much more than Anti-inflammatories for it for most of my life (except when I was really little). Occasionally I will have to have fluid drawn out of my knees (haven't needed this in more than 10 years) and once I was on Prednisone and almost had to start taking Mtx (about 5.5 years ago) but took Minocycline and that helped a ton (an off label use for it).

As for the AS, this is so new that I think we are going to try one thing at a time. I am worried that it will be hard to tell if the Sulindac is making my GI symptoms worse because they are already bad enough.

I am fighting the colonoscopy to be honest. I know I should just insist on having one (I'm sure all I'll have to do is ask, my GI doc won't fight me). Yuck, though.

I feel like such an old lady! I am currently taking 4 prescriptions (I also have Hashimoto's disease which is an autoimmune hypothyroid disease):

1. Sulindac for AS
2. Minocycline for JRA (just started back up on this after years of being off)
3. Levothyroxine for Thyroid
4. am about to start another round of Xifaxin for SIBO (not sure if I should take this at the same time as minocycline and need to find out)

Denise

Re: New Here. GI problems and AS- help? Advice? [Re: scouter99] #211519 06/29/11 02:43 AM
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Hi Denise!
AS sucks!

My suggestion is to take a step back and evaluate how your diet fits in to all this. I have become firmly convinced that diet is the basis of many ailments. My own AS has almost gone after discovering that starch seemed to trigger it off. It remains debatable wether it is starch or gluten but the diet works for me. I think that those of us with glitches in the genes relating to pyridoxine [vitamin B6] germanic genetics, might have enzyme problems leading to the incomplete metabolism of things like starch.
I take B6 and also riboflavin which is vitamin B2. It seems to relate to the integrdy of the bowel lining. My suggestion is to research these things before you start taking meds. I am frequently astounded at the number of meds people take. They usually treat symptoms and not the disease cause.
Arthritis characteristically follows a substandard diet and a genetic 'glitch' which disables a process.
Look up the metabolic myopathies on emed or similar and consider the effect of diet.
It made such a difference to me.
I react to starch.


North
PreAS = STARCHfree, yoghurt, ,, meat , vitE, niacinamide,B complex
CARNITINE, B6
Fibro = antiviral, MAGNESIUM /B6
Arthritis in fingers = no potato fam. plants
***********************************
Candour & laws differ from place to place
Re: New Here. GI problems and AS- help? Advice? [Re: scouter99] #276889 12/15/16 12:01 AM
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I would also look into Exocrine Pancreatic Insufficiency. My husband suffered with AS for 25 years, but the most debilitating part was the diarrhea. He saw a GI doctor, tried gluten free for 1 year, and never changed the symptoms. EPI started being talked about after he died. With 3 grandsons, who I am having tested for HLA-B27, I still keep up with the disease and all aspects of it.

Re: New Here. GI problems and AS- help? Advice? [Re: scouter99] #277025 01/09/17 05:58 PM
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When I was having GI issues, by trial and error my gastro gave me a drug called Librax. It was my miracle throughout my stomach ordeal and I am fortunate to have squandered my pills so I have something to take from time to time.

Re: New Here. GI problems and AS- help? Advice? [Re: scouter99] #277072 01/16/17 01:24 AM
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Sorry you are struggling. I wonder if all the years on minocycline and now Cipro and NSAID is contributing to the GI issues. You could have autoimmune disease in the gut too. Have you tried going gluten free? Are you open to trying a biologic? Biologics help me a lot with back pain and stomach issues. Your rheumy will help you the most right now so focus on seeing him or her so you can get on better meds.

I wasted my time and money seeing a GI doc. I had a colonoscopy and endoscopy and they just found mild ulcers. I then went on a biologic shortly after and strict gluten free diet and my stomach is much improved now.


stelara, low dose prednisone, low dose naltrexone

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