Thoughts please

upsetmom

upsetmom

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I haven't been diagnosed with anything but l wanted some thoughts on my situation.

For the last 8 years l have had a constant pain near my bellybutton and right hip. Bowel motions range from normal, to smaller pieces or pencil thin. Over the years l've had numerous tests done but nothing showed up, so in the end l just gave up looking for answers.

A few days ago after a normal bowel motion l started to get intense pain in my rectum. I've had this pain before but it's usually gone in a day or two. Its now been 4 days and the pain is still there. It hurts to sit, walk, cough and even pass gas. I've also got a fever, which l've never had before. Any ideas?...... With my daughter having crohn's l can't help but think l've got it too.
 
Sorry I missed this.
Have you been in touch with your doctor yet?
The fever issue would trouble me a bit.
I know when Grace's rectum would swell it hurt more after she passed the stool than before.
Hugs
 
I'm still the same. Without pain killers the pain is unbearable.

I though it might resolve on it's own like it has in the past so that's why l never contacted my DR. I'll be making an appointment tomorrow.
 
GP should be able to order faecel calprotecton if you like.

Note this test is currently not approved by medicare. The cost varies between labs so get quotes.
 
Saw GP. She doesn't know how l've managed this on my own. She thinks l might have a fissure inside that's become infected. Had blood tests done and l'm having a CT done in a few hours. Depending on the results l'm getting referred to a GI, l'll know more tomorrow. Also got started on antibiotics. And l'm still in a lot of pain.:frown:
 
I'm sorry to hear you're feeling so crappy. :( (even though a different word probably could have been better) Hope they can get you taken care of soon. Lots of hugs to you. Xxxxx
 
When my son was diagnosed in 13' with Crohn's, my daughter (who had been diagnosed in 04') asked, "Do they just think he has Crohn's because I have Crohn's?"

No. They'd done biopsies.
 
I had a fissure once, so I know how they feel. And I used to have really bad internal hemorrhoids, which a dr. prescribed steroid suppositories and they helped a lot with the pain. I finally got them banded, which really helped.

I read the internal ones don't hurt. LOL! Mine sure did!

I'm sorry you've been in pain so long!!! I hope you get relief soon! If it were me, I'd be asking for drugs of some sort. Why suffer if you don't have to?
 
upsetmom said:
Saw GP. She doesn't know how l've managed this on my own. She thinks l might have a fissure inside that's become infected. Had blood tests done and l'm having a CT done in a few hours. Depending on the results l'm getting referred to a GI, l'll know more tomorrow. Also got started on antibiotics. And l'm still in a lot of pain.:frown:
Click to expand...

Any news yet?

Sending hugs your way.:hug:
 
Thanks for all the well wishes.

Fw my appointment isn't for another 7 hrs.

Lenny l did ask if hemorrhoids could do this and the DR said l wouldn't be getting a fever with them.

I feel a lot better today.

Now the long wait till 2pm.
 
Just a quick update before l head off .

Receptionist rang me and said DR wants to see me earlier. I have a 5cm abscess in my lower rectum that's pushing my bowel to the right and sever inflammation. Blood tests are showing l'm very sick.. Dr told me to go straight to hospital.

Thanks for all the support, will update when l get back.
 
upsetmom

Here hoping that trip to hospital has given you some relief.

Update us when you can.
 
good luck with the abscess.
NO FUN.
Hopefully they drained it and it healed ok for you.
Often it is a wise move to include more fibre in your diet if you get such a thing…like eating apples, nuts, cabbage, lettuce - FIBRE, can help.
good luck
 
I'm sorry you've been in pain so long!!! I hope you get relief soon! If it were me, I'd be asking for drugs of some sort. Why suffer if you don't have to?
Click to expand...

I am so beginning to agree with this. I can't seem to beat this thing with out them.

I hope you can get fixed and I pray that all people with this disease gets cured so we don't have to depend on drugs to feel good.
 
Hi everyone l haven't had a chance to update as l have no internet on my phone. I'm out of hospital today....but only for the day l have to go back this afternoon.

I'm having surgery on Monday. They want the infection settled before they attempt anything. At first they thought they might be able to drain the abscess, but the surgeon said its way too high for them to reach it and its very close to the bladder. Plan is to try do it through the back passage and if that doesn't work it will be done through the abdomen. I've never been so scared in my life but it needs to come out. I'm also having a colonoscopy sometime after the surgery, surgeon thinks i'm most likely to have crohns disease.

Ok l'm going to try and enjoy the next 8 hrs at home..:ysmile:
 
I'm so glad you got to go home for awhile. That makes a big difference.
I hope surgery goes smoothly and if it's ibd..........I can suggest a great forum. :rosette2:

Hugs
 
Something weird happened.

I went to have my surgery today but when they went in they found nothing there. The only thing they saw was some thickening. Since Wednesday l had been on triple iv antibiotics, they said that most likely cleared up the abscess.

A few days ago the surgeon said this abscess didn't show up overnight but strangely it disappeared in a few days...I didn't even think this was possible. I'm going to start a thread to see if this has happened to anyone else.

I'm back home now. I'm on oral antibiotics and i'm to have a follow up with the surgeon in 2 weeks....Upper and lower scopes are getting done in 6 weeks.
 
I've had similar things happen to me. They found a lesion on my liver but the next time they did a scan it was gone. I guess you can think of that as a good thing yes? Hopefully your on the mend.
 
That is strange but it's also good. I think that is the tricky part of the disease...it causes these infections and things when it's active but when it's not in an active state you are fine. The antibiotics have probably helped a lot as well. I hope you are on the mend and the disease isn't playing tricks on you ;) take care hun
 
I am really sorry you have been dealing with this. It IS extremely strange that they didn't find the abscess. From what I know, these abscesses absolutely require drainage. IV treatment is not enough according to the medical literature. This would make me wonder: did they read the CT scan incorrectly? Did they miss the abscess in surgery? Both are possible but rare. If you feel any indication that the symptoms are coming back, I'd go back to your doctor asap. I hope you represent an unusual time when antibiotics were enough.

HUGS to you.
 
Thanks xmdmom

Theses are my exact thoughts, had the ct been misinterpreted or did they somehow miss it. I don't have much faith in these DR's at this hospital.

These are the ct results...CT findings are suggestive of a 53 x 36mm phlegmonous collection along the left lateral aspect of the rectum pushing the rectum to the right. It is seen posterior to the uterus and appears to be separate from the ovary. An immediate surgical review is suggested.
 
I am interested in the language "phlegmonous collection"- I don't know if this is common language in Australia. I never heard of it until now but I'm not a surgeon.
I found this which says a phlegmon is a walled off mass.

" Because the inflammation can go through the whole thickness of the wall of the intestine, deep ulcers can form and can turn into tracts (fistulas) connecting different parts of the intestine together or connecting the intestine to the skin, vagina or bladder. Tracts do not always create fistulas connecting areas; they can also lead to a phlegmon or abscess. A phlegmon is a walled off mass of inflammation without a bacterial infection. An abscess is similar, but with the infection and pus. With inflammation, the wall of the intestine can swell leading to obstruction or blockage. This area can then scar. The blockage can lead to abdominal pain, vomiting and bloating of the abdomen."

http://www.giassoc.org/crohns-disease.html

and this on medscape:

Abscess definition
One definition of an abscess is a drainable, infected fluid collection. One dictum is "If it will not go through a catheter, it cannot be drained. If it is not infected it is not an abscess." Differentiating a phlegmon from an abscess can be difficult. A phlegmon may be defined as a vascularized infection that still has perfusion. Some nonsuppurate lymphadenitis may not demonstrate enhancement on imaging studies (eg, CT scanning, MRI, amplitude Doppler ultrasonography [US]), but other collections that do not show central enhancement suggest the presence of an abscess, hematoma, or necrosis.

A phlegmon is an undrainable infection. A viscous abscess without significant debris may be difficult to aspirate through a needle but should be drainable through catheters of appropriate caliber. Irrigation with saline or fibrinolytic agents may be necessary for successful drainage of an abscess with significant debris, blood, or viscous elements.[7]

It's rather confusing.

Any chance of getting better doctors?
 
I don't have private health insurance so l'm stuck with the Drs the public health system has.
 
I have a date for the scopes...1st May.

I saw my GP today and she said there has to be a fistula somewhere as these abscesses don't just pop up out of nowhere. I have an appointment with surgeon on Monday, will ask more questions.

Since stopping the antibiotics l've started to get a slight pain when sitting...l hope it's not coming back.
 
im glad the scope is soon.
Do you know the prep yet?

I hope it isn't coming back but maybe them see it in the scope will help them find the fistula?

I've been mean to ask, how is child taking this news?
 
FW l don't know what the prep is yet, l was told l'd receive a script in the mail.

My daughter was happy when l first told her l might have crohn's....the first thing she said was l'll have a friend.:yfaint:

My last scope was about 6 years ago. At the time l was told it was normal but no biopsies were done. l'm wondering had there been microscopic inflammation back then that wasn't picked up...l'll be making sure they do biopsies this time.
 
The Dr was confident they were going to find crohn's today when l had my scopes but they found nothing. In a way l was hoping they found something to explain my constant pain beside my hip, bellybutton and lower back for the last 8 years. But now l'm back to square one with no answers.
 
:ghug:

I assume they took biopsies, yeah?

I having been looking through your threads upsetmom and I am sorry I am dredging up and commenting on old news but when you had the rectal abscess was in the bowel or outside the bowel?

Matt had a phlegmon and it is as xmdmom described.

As far as imaging is concerned, well we have had just as many negative experiences as we have positive…

-Sarah’s CT returned a grossly normal result one week prior to emergency surgery for a ruptured bowel.
-Matt’s very first diagnostic imaging test, an ultrasound, found no abnormalities. It was repeated a couple of days later and lo and behold they found thickening of the TI.
-In between Matt’s diagnosis and surgery more than one CT scan identified extensive bowel inflammation. They found what it actually was when they operated on him, it was a phlegmon that was adhered to his abdominal wall.

I personally look at imaging the same way I do ever other test and observation with this disease. If all the tests and what you see in front of you marries up then all well and good, if they don’t then it warrants further investigation and monitoring.

Are you keeping a diary?

Dusty. xxx
 
They said they were going to take biopsies. I didn't think to ask if they did. On my report it says specimens taken but nothing written underneath it so l really don't know.

My abscess was deep inside, somewhere near my ovaries. Before the scopes today he told me the location of the abscess could only be caused from crohn's he was 100% certain they were going to find crohn's. After the scopes he said it could have just been an infection maybe caused by my ovaries and not to go looking for answers unless it comes back. The pain he said could be just gas pain. I don't know how gas pain could be caused in the same spot all the time. This is why l gave up looking for answers over the years.

I haven't kept any diary apart from here.
 
Specimens taken would be biopsies. Do you have a post scope appointment?

Have you had the ASCA test done?

How frustrating for you! :ghug:

I would keep a symptoms diary if it is possible and see if you can see any trends etc developing

Dusty. xxx
 
Heres the whole report of the ct findings

As clinically suspected a left perirectal low density area is seen which is highly reminiscent of a perirectal abscess (lacks any air fluid levels though) It measures 53x33mm, pushing the air filled rectum to the right. There is nonvisualisation of a distinct margin, therefore, it could be intramural in nature because of sever inflammation. The walls of the rectum are not very appreciable.

There is subtle streakiness opposite of the adjacent fat with craniocaudal extent of the collection being 5cm.

It is seen posterior to the uterus. The left ovary is bulky which appears to be due to phlegmonous changes extending from this collection with thickening of the peritoneal reflection.

No ovarian masses are such evident.

No renal lesions are seen. No hydronephrosis is noted.
 
Ask for a pathology report to be sent to you. Just because your scopes appear to be clear doesn't mean they truly are clear.
 
The GP should get a copy of your results. If not ring the doctor that did your scope and ask that they be sent to the GP so you can get a copy.

The GP can order the ASCA test. My GP did based solely on the fact that my kids have it and I had abdo pain.

Dusty. xxx
 
nice! I have heard of that happening before, like the crohns can just disappear overnight…….the triple IV antibiotics must be working. Is that anti map antibiotic prescription you are taking?

good luck
 
The search for answers should be based on your experience and quality of life, not just the presence or absence of an observable mass. If things are not illuminated by the biopsies and other tests mentioned, then an investigative laparoscopy might help. They use tiny incisions and purely diagnostic laparoscopies are day cases. There are so many organs bunched closed together in the female pelvis that one system can easily affect the other. They have already flagged the ovary and peritoneum as well as the rectum. And nothing really makes up for having eyes on what is going in there.
 
Last edited:
happy poo poo said:
nice! I have heard of that happening before, like the crohns can just disappear overnight…….the triple IV antibiotics must be working. Is that anti map antibiotic prescription you are taking?

good luck
Click to expand...

I haven't been diagnosed with crohn's. I was only on triple iv antibiotics for 5 days and l'm not on any anti map antibiotic.
 
Is it normal to have pain in the rectum after scopes?

Before the colonoscopy l was getting a slight pain when l sat down which the DR said was probably due to scar tissue. Since l has the scopes l have a constant pain to the left, it feels exactly like it did when the abscess was there but not as bad. I'm wondering if they did a biopsy of the area and its irritated it because l know there is nothing there.
 
It maybe a little tender after the scopes and prep and I think that would be normal. But, it seems like that should go away after a day or two at the most. From what you're mentioning though, I think at least a call to the advice nurse maybe in store...

I hope they can give you some answers. Sending lots of hugs your way.
 
My daughter has an appointment with our GP tomorrow so l'm going to speak to her. Something just doesn't feel right.
 
OMG! l am so angry that l could cry.

I was talking to my GP the other day and she had no idea why l was in pain, she told me to wait and see what the biopsies reveal. She said they usually get sent to her in a few days. Today l decided to ring the dr's receptionist and asked her how long before my GP gets the results of the biopsies. She said the results have already been sent and no biopsies were done because everything looked normal. I can't believe he didn't take any biopsies after he had previously told me he was going to take plenty. I have an appointment with my GP on Monday and l know she won't be very happy about this either.
 
When l told my GP that my scopes were normal she asked what the DR had planned next. She couldn't believe that l didn't even have a follow up appointment with him to discuss the biopsies. Now l know why l didn't have an appointment. I just hope she has plans for more testing, l have a lot of faith in my GP...l wish l had found her years ago.
 
I'm sorry he didn't do biopsies! You don't know what is going on at the cellular level. My son's scopes looked normal but on the cellular level he has eosinophils collected in his esophagus and colon as well as some other issues in his colon.
 
That is awful, I'm so sorry you were let down by these bloody so called health professionals!! I hope you get some answers soon xx
 
Have you had a faecel calprotectin done?

Can't believe they didn't take biopsies. My colonscopy shown nothing and they still took biopsies.

I hope this specialist is not your daughter new GI.
 
No, l haven't had one done but will ask GP tomorrow.

The DR that did my scopes was a colorectal surgeon not a GI .
 
Just remember faecel calproectin is not free. You will need to ring the labs for the price.

Glad it wasn't dd new GI.
 
Last edited:
wow I cant believe it either. with all your latest story and daughter CD diagnosis..., no biopsiy, no referral with a GI...
i encourage greatly calprotectine test thats an easy and unexpensive test to do.
you need a referral to see a GI consultant who might want to remake a small sigmoido-rectoscopy or (even colonoscopy if you mention pain in the right area) and analyse your case furthermore.
sending you support.
 
Saw my GP and she thinks we're running around in circles. At this stage she feels it's best if l was referred to a GI who knows exactly what tests need to be done next, but in the meantime l'm having a lower abdomen and a rectal ultrasound done. Does anyone know if the rectal ultrasound is done internally? l asked the receptionist but she didn't know.
 
Reading about this ultrasound doesn't sound good..:(
I was told nothing about an enema, but then the girl that made the appointment had no clue about the actual procedure. I'll have to ring back.

I never got the referral for the GI, probably after these ultrasounds results. I'm guessing this is about the 10th ultrasound on my abdomen over the years.
 
I had my rectal ultrasound today, it was done through the skin. When she finished she said results were going to get faxed through to my GP this afternoon and asked when l was going to go see her. I knew straight away something was wrong. I asked if she has seen anything and she said there was still residual there from the abscess. I don't know how they didn't see this on the colonoscopy. I feel scared again..:(.
 
My guess would be because its not inside the colon.

Ring GP see whether they have results and tell them you told that you needed an appointment this afternoon or tomorrow morning to discuss.
 
I was hoping to delay my appointment till after l have my abdominal ultrasound on Thursday. My GP usually rings me if she thinks its urgent, so far no call.
 
They may want to an internal abdominal ultrasound. The only reason the didn't do one with my daughter was her age.
 
I usually do have an internal as my uterus is retroverted.

I didn't hear from my GP so it must not be too bad.
 
So the ultrasound shows that the abscess is still there. My GP doesn't know if its come back or never went away in the first place. I need to have a ct and then go see the surgeon. I'm still confused whether this thing is in the bowel or not..Here are the findings
In the region of interest, posteriorly, in the perianal region, there is a nonvascular heterogenerous collection with dimensions of 3.2 x 3.6 x 4.0cm.

So it's not much smaller.:(
 
I'm sorry you're still having troubles. :( Sure wish things could be at least a little simpler for you and that they'll get you taken care of soon. Continuing to send lots of hugs your way...
 
I'm not feeling too bad, l just try to avoid sitting if l can. I was told if l start having severe pain, fevers or vomiting to head straight to the ER.

IBD was ruled out by this surgeon with clean scopes and no biopsies.:yfaint: My GP was going to refer me to a GI but the abscess needs to be sorted out first.
 
upsetmom said:
I'm not feeling too bad, l just try to avoid sitting if l can. I was told if l start having severe pain, fevers or vomiting to head straight to the ER.

IBD was ruled out by this surgeon with clean scopes and no biopsies.:yfaint: My GP was going to refer me to a GI but the abscess needs to be sorted out first.
Click to expand...

:yfrown: that ticks me off! I can't believe they didn't even biopsy in the area where they thought the abscess should have been.

I hope you stay feeling well. Update when you can!:rosette2:
 
Sorry you're going through this!

When I had an appendectomy and bowel resection last June, the pathology came back as suspected Crohn's; however, the GI that did my colonoscopy afterwards didn't do biopsies, either. That was my hint to find a new GI! The new GI was able to diagnose through the prior pathology, blood work, and a pill cam. They didn't think insurance would cover scopes again so soon. It is so frustrating to wake up after all of that and realize they didn't do what you thought they were going to!

It sounds like your GP has your back. Good luck with the CT and keep us updated!
 
This is probably stupid of me but l chose to go back to the surgeon that did my scopes. When my GP said there was an abscess and l needed to be seen by a surgeon she didn't want me going back to that surgeon. She gave me a few other options but l chose to go back to him as he knew exactly what had been going on. I thought l'd give him another chance...l just hope l made the right decision.
 
Ask nurses if the surgeon is good. My daughter says, when patients ask her, she will tell them "getting a second opinion is always wise" (when she wants to say the doctor sucks).
 
There's been a change of plans. My GP wanted me to have a CT before seeing the surgeon but l just got a call saying he only wants a blood test done and to see him tomorrow.
 
It's true if you trust the referring Dr. and they suggest seeing someone else I would do it. They may have info on the original Dr that can't be shared.
Doesn't mean you have to continue with the Dr giving the second
opinion.

I
Good luck!

Lauren
 
I don't know where to start. I go in to see the DR and he said blood tests are all good. He said there is a small collection but bloods aren't indicating an infection so he's not too concerned at the moment. He told me 4cm sounded big but really its only as big as our thumbnail. I don't know how big his nail is but mine surely isn't 4cm. He said it was in a very bad area and if he did try to drain it he'll create a lot of problems. So that's all he was going to do, just leave it and keep an eye on things. Just as l was about to leave he decided to check my bottom and that's when he found a fistula that he said was not there when the colonoscopy was done. He wanted to know if l has an leakage from my bottom. I remembered a few days ago l had a bit of leakage and a lot of stinging. I don't recall any other leakage. He also said l definitely don't have crohn's. So now l've been booked in for an MRI to see what's happening.... l really should have listened to my GP and seen another DR.
 
Do you like DD new GI? Can you get referral to them?

Keep appointment this surgeon has make. Just move on with a new referral at the same time.

4cm is a lot bigger than thumbnail. Can you get a copy of the report?
 
Catherine l do like my daughters new GI but at the moment l think l need a surgeon. I'm thinking after the MRI if he's still not willing to do drain it l have to find someone who will. I'm scared this abscess is going to get bigger and cause more problems. I do have a copy of the ultrasound report, l posted the results above.
 
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.
 
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.
 
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.:(
 
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.
 
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.
 
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.
 
I'm sorry to hear of the latest developments. :hug: 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.
 

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