It's Been 10 Years - Finally I Have A Diagnosis

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helen105281

helen105281

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I have been having stomach issues for about 10 years, mostly excessive bloating and cramps. Some days it is that bad I can look 9 months pregnant by the time I get home from work and am in a lot of pain. Doctors over the years have put it down to IBS, including a consultant I saw. Anyway, I had had enough and as I have private health care through work I thought I would get it looked into properly. The Functional Gut Clinic in London was recommended to me earlier in the year, so I called them first and they put me onto a consultant at the London Gastro Centre who has been fantastic. Over the last few weeks I have had an MRI, Colonoscopy and today a Hydrogen Breath test. The colonoscopy and MRI were clear (thank goodness) but the test today gave me the answer I have been waiting for for years. I had to drink a sugar solution and they made me breathe into a bag every 15 minutes and the hydrogen and methane levels were checked. My starting hydrogen level was higher than it should have been and throughout the test the level rose so much that they stopped the test early. After waiting around in London all day (I went and annoyed the OH at work) I saw the consultant tonight who confirmed I have SIBO (Small intestinal bacterial overgrowth) and the bacteria in the large bowel is also all over the place. I have to take Doxycycline for 2 weeks (yes I am a guinea pig) followed by really strong probiotics plus loosely following a low fodmap diet for 6 to 8 weeks. If I am still having symptoms I will see him again and we can reassess as there are other antibiotics to try. It may not be sorted with just the one course. Am feeling much more positive though as I have been so fed up with it all. and then I feel bad as the OH has ulcerative colitis which is much worse, but at least for me, the end may be in sight.
 
My goodness - 10 years! Thank goodness you went for this test and now have a diagnosis.
 
Oh heck that's taken too long :mal:
I'm glad you have a diagnosis and now hopefully the meds (lol @ guinea pig) kick in and you'll be pain free and feeling comfortable again!
Hugs xxxxxxxxxxxxxxxxxxxxx
 
Thank you all, it is a relief, though I shouldn't read too much online as it says people with IBS can have high readings. The clinic that did the test basically said IBS is just a term anyway for a number of things including SIBO. Picking up the Doxy today hopefully and will ask if the pharmacy can order in the probiotics for me as will be easier than ordering online as I think I need to buy every 10 days.
 
Superb! Am so pleased that you might have some answers. Health problems are so much easier to deal with if you actually know what you are dealing with! Really hope this fixes you and puts you in a better, more comfortable place. As for you other half - don't feel guilty, I bet he is really pleased for you. And lets face it - there should be a limit as to how many bowel problems one household can have!
 
So pleased for you! I battled for years to get a diagnosis of Fibro, and my gut problems, so I know what you have been going through! Fingers firmly crossed that the Doxy, probios and diet sort you out :-) x
 
Unfortunately the nhs take way too long to do anything. I'm so pleased you are finally getting somewhere and really hope the drugs work for you :-)
 
I'm glad you finally have some answers and an action plan. IBS (in what ever form) can be very painful, especially the bloat. The cramps can take the breath away, but the bloat when it's bad can be horrible. I am fortunate to have been able to ease mine somewhat through diet. Let's hope that for you the treatment works, and yours will be a lot more manageable too, or even eliminated.
People think it's a mild thing, and it can be, but when it's bad it's bad, so it must be a massive relief to have treatment xx
 
I now understand why pigs can feel so rough on Doxycycline, got a right headache. Headache is one of the symptoms of SIBO though and I was told to expect a flare up of my symptoms while on it, as it shows it is hopefully working.
 
Ugh. Sounds horrible, but as you say, if it works then hopefully it will be worth it. :hug:
Hope the headache doesn't last long x
 
Thank you. Is only for 2 weeks so I just need to grin and bear it. Headache has gone for now, but the usual symptoms are there instead.
 
Oh I'm sorry the symptoms are still there, but glad the noggin is better! Headaches are horrid xx
 
I'm really pleased that you've had a breakthrough on the diagnosis front. When my back was really bad, I eventually used my work PMI and, like you, it made such a difference. Hope the side effects of the meds don't last too long.
 
Hope you feel better soon @helen105281. If you can bear the side effects of the drugs for the short term (as long as they are not too drastic or life threatening) you may find your body adjusts and symptoms settle down. I had to do this last year when there was nothing left to try!
 
piggieminder said:
Hope you feel better soon @helen105281. If you can bear the side effects of the drugs for the short term (as long as they are not too drastic or life threatening) you may find your body adjusts and symptoms settle down. I had to do this last year when there was nothing left to try!
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For SIBO?
 
I take doxycycline on a regular basis for some form of dermatitis that no one can diagnose. The side effects from it ease over time, just make sure you're taking it with plenty of food and stay sitting up for a while! Glad you finally got a diagnosis!
 
Not SIBO thank goodness, my medical problems read like a book so I wont bore you. I take tablets to counteract the tablets!
 
Took my last antibiotic this morning so tomorrow I start probiotics and low fodmap. Have planned tomorrow's food, but it is so difficult as a lot of vegan foods are restricted. I think I just need to not eat so much processed stuff really and cook from scratch.
 
Thank you.

Just found a powdered veg stock recipe which could be a life saver ha ha. I put stock in everything.
 
Oh dear, I hope I don't take ten years to be diagnosed with SOMETHING! :no:
To be honest, I'm not convinced that its IBS for me :roll:

I'm so sorry to hear that you've been having such a rough time :hug:Get better soon :hug:
 
So glad you have a diagnosis after so long, I hope the treatment works for you. My dad is living with consequences of cancer, chemotherapy and bowel surgery. He finally saw a GI specialist who identified SIBO as part of his ongoing problems. After 2 courses of treatment he saw an immeasurable improvement. It's great when this happens.
 
VickiA said:
So glad you have a diagnosis after so long, I hope the treatment works for you. My dad is living with consequences of cancer, chemotherapy and bowel surgery. He finally saw a GI specialist who identified SIBO as part of his ongoing problems. After 2 courses of treatment he saw an immeasurable improvement. It's great when this happens.
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Glad his treatment has worked, gives me a bit of hope. I can see me needing more than the one course of antibiotics tbh.

Hope your dad is recovering ok from his other issues.
 
Thanks Helen. My Dad is doing really well now, thanks to the GI specialist finding out that he had SIBO plus bile salt malabsorption as a result of all his surgery and treatments. Phase 1 was the ABs (needed 2 different courses and the second one made him feel lousy but made such a difference afterwards) and then the treatment for his Malabsorption. He will be on low dose chemo for life but is doing so well that we cannot grumble.
Hope that a second course of treatment sorts you out.
 
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