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06-10-2015, 03:08 AM   #91
upsetmom
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On my MRI form it says l have a supralevator abscess. No one has ever given me a name. I've been reading that this is a very rare abscess.
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06-10-2015, 03:17 AM   #92
Catherine
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Your gp can issued a referral to surgeon. GI can also issue a referral to surgeon. Sarah's referral to a surgeon was done by her GI.
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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)
06-10-2015, 03:31 AM   #93
upsetmom
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I'm going to talk to my GP and see who she recommends, especially now that l have a name for my abscess. I can't help it but l'm very scared.
06-10-2015, 04:40 AM   #94
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I have no advice. Just want to remind you that we're here for ya and hope that you can get taken care of soon. Sending lots of hugs your way...
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06-10-2015, 04:45 PM   #95
xmdmom
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I'm sorry you are dealing with this.

If at all possible, I would try to find the doctor who has the most experience with this type of abscess, even if it means traveling. A good doctor, who knows that s/he doesn't have enough experience, should refer to a more experienced one, or at least consult a more experienced doctor for guidance.
06-10-2015, 04:58 PM   #96
upsetmom
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I've been thinking all night, didn't get much sleep. After the MRI when l see the surgeon l'm going to ask him to refer me to someone who has more experience in this area. From what l've read this abscess definitely needs draining. Reading my form for the MRI it says the abscess settled on antiobitics , so l don't think it ever disappeared in the first place like l was told.. My theory is when they went to operate they realized it was in a bad area and decided to leave it, hoping my symptoms didn't come back.
06-10-2015, 05:00 PM   #97
xmdmom
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I wonder if it's possible that it had shrunk from the antibiotics and was missed at surgery.
06-10-2015, 06:20 PM   #98
upsetmom
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xmdmom it probably is possible but a lot of what this DR has said just doesn't make sense and that's the reason why l don't believe him. Like before the surgery l was told there might still be a bit of fluid and they were going to drain it, but now at 4cm he doesn't think it needs draining. And before seeing him this time my GP had me booked in for a CT but he told me he only wanted bloods done. I keep thinking did he know it was still there and that's why he never wanted the CT done. I don't know my mind is going around in circles at the moment...l can't wait till this MRI is done and l get the results.
06-10-2015, 06:45 PM   #99
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Sorry l can't help you. Start a new thread and l'm sure you'll get a lot of replies.
Thanks
06-10-2015, 07:53 PM   #100
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I'm sorry to hear of the latest developments. The first surgeon I had when dealing with my rectal disease (complex rectal mass) did not have particular expertise, but he kept telling us he didn't need to refer on to a specialist, even going as far to say that if we could find a surgeon who offered a different course then they must be a charlatan! Long story short I wasted a lot of time with him, had two surgeries under him during which he failed to deal with the original problem and neglected to tell me about further complications he found. After a lot of tears, I finally switched to a specialist surgeon and I couldn't believe the difference both in treatment and manner (first one was very dictatorial). I do wish I had changed earlier but it was a scary and overwhelming time.

I appreciate your surgeon is a different guy, and there are instances when leaving things alone is best. But I personally would second what xmdmon said. I would encourage you to go with your gut and get the second opinion. Your misgivings are the best gauge you will ever have in terms of deciding which surgeon to put your faith in. I wish you the best of luck with it.
06-10-2015, 08:13 PM   #101
tots
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Even without doubts you should get a second opinion. If only to confirm the first one was the right one.
When I worked in a Drs office it was always encouraged before you have surgery. It's just a smart thing to do.
As mentioned before some have a better bedside manner, some are horrible in that area but the best qualified to
Do the job.

Good luck


Lauren
06-19-2015, 05:09 AM   #102
upsetmom
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My MRI showed that the abscess is only 7mm instead of 4cm that the ultrasound showed. The surgeon said ultrasounds aren't very accurate. I could understand if it was a little smaller but 7mm to 4cm is a big difference. No fistulas were seen on the MRI..he didn't even bother to check my bottom even though l told him l get a lot of stinging. I should be happy with the results but l like to know why l'm still getting pain when l sit down. He told me if l start getting sever pain then l should head to the ER, l don't know why he said this if nothing is there.
06-19-2015, 06:33 AM   #103
upsetmom
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Reading my report it says there are several tiny cystic foci / collections with a maximal combined measurement of
10 x 8 x 14mm near the coccyx. He didn't mention nothing to me about this. I wonder if this is where my pain is coming from.
06-20-2015, 12:55 AM   #104
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i wonder if you may have concomitant hemorrhoids along with that abscess...

I once had a wrist MRI which showed a pretty large cyst in the area, but I have been told it was of no concern and something quite common. Dont know about rectal cysts though. I had a rectal MRI and no cyst were noted.
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08-04-2016, 02:21 PM   #105
upsetmom
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I'm starting to get worried again. The last few weeks my stools have been flat on both sides. The last time l had flat stools was when l had the abscess. I read somewhere that flat stools could be caused by lack of fibre so l'm going to try a fibre supplement before l go Dr.

A few months ago l saw a GI who did a F/C and a blood test to see if l had crohns. They both came back normal so l didn't get to have an MRI of the small bowel. I still get a lot of pain near my hip and bellybuttton, no one can figure out what it is.
11-30-2016, 04:53 PM   #106
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Sorry to hear about the uptick in symptoms! Saying a prayer for you! Being diagnosed always makes this so much more mysterious and worrisome. Sometimes I wish it were just something well known like crohn's even. At least I could help out my cause more.
11-30-2016, 05:06 PM   #107
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I'm starting to get worried again. The last few weeks my stools have been flat on both sides. The last time l had flat stools was when l had the abscess. I read somewhere that flat stools could be caused by lack of fibre so l'm going to try a fibre supplement before l go Dr.

A few months ago l saw a GI who did a F/C and a blood test to see if l had crohns. They both came back normal so l didn't get to have an MRI of the small bowel. I still get a lot of pain near my hip and bellybuttton, no one can figure out what it is.
Hope you get answers soon.
09-03-2017, 07:11 PM   #108
upsetmom
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l am back again.

The last few months have been hell. I first started to get pain under my left ribs and constant burping. I had u/s, ct, xray and h plyori breath test but nothing could be found except my iron levels were very low and I needed an infusion. My dr suggested l take nexium for a few weeks. Things did improve for a while. But then a few weeks after i stopped the nexium l started waking up with nausea. Back to the drs and he told me to start the nexium again but this time it did nothing, my pain under my ribs got worse. My nausea got to the point where i ate very little and l had lost 7kg. I decided to see another dr who ran a lot of tests. All my tests were good except the h plyori came back positve. After being sick for so long l was happy to hear that something had finnaly been found. I Stopped the triple therapy last week but I'm still nausous and eat very little. My dr told me to stay on the nexium. I saw the specialist who said we need to do scopes to find out why my iron levels were so low.

I'm on the waiting list to be scoped within the next 6 weeks. Does anyone know if l need to stop taking nexium before the scopes?
09-03-2017, 08:35 PM   #109
ronroush7
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Have you had any iron infusions ?

09-03-2017, 09:10 PM   #110
upsetmom
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I had 2
09-03-2017, 09:20 PM   #111
ronroush7
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Hope you can get help soon.

09-04-2017, 05:54 AM   #112
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There is no blanket rule on stopping PPI's. Some doctors want PPI's stopped 4 or 5 days prior to the procedure if possible, others don't.

Either ring the doctors surgery or if it is at the hospital ring the day surgery unit.
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09-04-2017, 03:34 PM   #113
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I don't know about stopping the nexium but did want to mention that stopping it does cause rebound symptoms. People often think that when they stop it and get symptoms it means they still have an active condition but I think it can also be simply rebound.

"Stopping Nexium or Other PPIs:
So how can people like you phase off drugs like Nexium without going through hell? First, never stop suddenly! Rebound hyperacidity can cause unbearable heartburn. We know this because of a Danish study (Gastroenterology, July 2009). Researchers recruited healthy volunteers with no history of heartburn. They were randomly assigned to either Nexium or placebo. After eight weeks on Nexium, a placebo was substituted without the subjects’ knowledge. The conclusion: “PPI therapy for 8 weeks induces acid-related symptoms in healthy volunteers after withdrawal.” In other words, even normal people without heartburn can experience symptoms if the drug is stopped suddenly."
https://www.peoplespharmacy.com/2013...ere-heartburn/
09-04-2017, 07:03 PM   #114
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First, I want to say I read through the entire thread and am distressed by the confusing, contradictory, and in the case of no biopsies, unprofessional care you have received. Regarding iron in particular, when I was first diagnosed it was because my hemoglobin was 9 and a bone marrow biopsy showed no iron at all. My duodenum, where iron is absorbed, turned out to be completely ulcerated with a stricture. I couldn't tell from reading whether your small bowel has been imaged at all. I really think you need an endoscopy and perhaps a capsule endoscopy. I hope you get some much needed relief soon.
09-23-2017, 11:35 PM   #115
upsetmom
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My scopes are getting done in 2 days. Getting very nervous about the prep and procedure.
I stopped the nexium a few weeks ago. My nausea is better but I'm still occasionally getting heartburn and pain under my ribs.

Jabee, the only small bowel imagining I've had done was a ct which was normal.
09-23-2017, 11:47 PM   #116
ronroush7
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My scopes are getting done in 2 days. Getting very nervous about the prep and procedure.
I stopped the nexium a few weeks ago. My nausea is better but I'm still occasionally getting heartburn and pain under my ribs.

Jabee, the only small bowel imagining I've had done was a ct which was normal.
Hope and pray the best for you.

09-23-2017, 11:55 PM   #117
upsetmom
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Thanks ron

A friend of mine suggested l drink grape juice after the prep to get the horrible taste out. I didn't think anything red was allowed but reading my instructions it says l can have grape juice. This has got me confused. I'll have to ring in the morning to make sure it's ok.
09-24-2017, 02:31 AM   #118
ronroush7
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I could be wrong but I didnt think anything purple was allowed.

09-24-2017, 05:51 AM   #119
xmdmom
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Maybe white grape juice.
09-24-2017, 08:29 AM   #120
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Yellow or clear grape is ok but not purple
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