Latest Appointment - Gastro

[Janey]

Hi Guys,

I saw my gastro today and got some results of tests. I'm interested in whether any of you have had similar things.

He said I had diverticula all over my upper bowel because of the food not being propelled properly. Because it hasn't been moving, it has made it pool in certain parts of my intestine, therefore stretching the intestine into bulges (my EDS doesn't help here..). He also said there were a few areas of rotten intestine that had so much bacterial overgrowth that they were no longer functioning properly. He's put me on back to back anti-biotics for the next 6 months and says if that doesn't sort it out he'll have to remove that part of the intestine. He also said I need to have a botox injection in my pylorus gland to keep it open. Has anyone had this? Or have experience of taking the anti-biotic Augmentin?

Bizarrely he gave me another TTT and I blacked out for the first time (I'm not normally a fainter). He then proceeded to take 8 viles of blood testing for hormones, celiac, thyroid - all the other usuals, STRAIGHT after the TTT! I felt awful and so faint I could hardly walk back into the waiting room and had to drink coffee and loads of water before I could even leave the hospital.

I've been thinking of starting work again (not doing what I was doing before, but just a part time job) but he said on no account should I get a job until my symptoms are under control. And that has been proved to me by the time I got back today, now I'm having a crash, lying in bed from being on my feet too long today. It's the first day I've felt completely disabled and completely out of control of this illness.

I know I'll have better days, but I just needed to vent. Any similar experiences with the gastro stuff would be interesting to hear.

Sorry for terrible writing style, just so out of it this evening.

[juliegee]

Wow, what an appt! No doubt you needed a good cup of coffee to just get out of there. I'm curious, Janey. What kind of testing did your GI do. The upper part of the bowel- small intestine is so hard to get a good look at- yet your GI seems to have a really good idea of what's going on in there.

Are you on a prokinetic, in addition to the anti-B's? Which antibiotic are you on? What dose? Did he recommend that you take a probiotic to replace good bacteria being lost by the antibiotic? Excuse so many questions....my son and I both have similar issues.

In some ways your GI seems really good in that he made the connection between your dysautonomia & slow GI tract. Weird that he insisted on seeing for himself that you had autonomic issues with a new TTT. Is he at a major teaching hospital by any chance?

I'm sorry you're feeling so badly. I hope the medicine will kick in and start to make you feel much better without any further intervention.

Gentle Hugs-

Julie

[Mrs. Burschman]

Guts problems = no fun.

Sorry to hear about your issues. I feel your pain!

[Maxine]

Sorry to hear your having gastro problems too----BIG HUG to you.

I have a large 5cm diverticuli in small bowel, and 3/4 of large bowel covered in diverticuli.

There's rarely a day when I feel completely comfortable with my gut. BLOAT, BLOAT, BLOAT!

I'm lucky to "go" twice a week. Things just pile up in there until they can't anymore, then finally........

I had a lower GI, and this is where they found the excessive diverticuli. They were screening for colon cancer because my brother had it, and in fact he didn't survive and passed away in Feb. It was really sad, and he fought a good battle....but it hit the other side of his colon and got into 17 lymph nodes.

He survived almost 3 years, and it got his liver. Docs thought a regular colonoscopy was too risky for me at the time, so a lower barium enema/lower GI with double contrast was done. They usually do this to screen older people, or people who have a twisted bowel who can't have a scope.

When I went to the NIH EDS study in April 2008, the geneticist who was running the study saw my GI films and said this was way too many diverticuli, and I needed a regular colonoscopy for a biopsy. My PCP wants to do a virutual, and cancelled the regular one I almost had done last year. I cancelled one other time due to being sick with a virus. So here I sit, I'm going to see the surgeon who was going to do my original colonoscopy on Wednesday next week to discuss what we are going to do. I haven't been stable at all with my other health issues, so I have no idea what to do-----------I'm worried about my GI stuff. I think my EDS has a lot to do with my digestive problems, and so did the geneticist at the EDS study, but she felt something else is going on also. My regular EDS geneticist thinks my GI problems are related also.

Maxine :0)

[potsgirl]

Wow, Janey~

That was an appointment and a half! I know there are many of us who suffer from GI issues with dysautonomia, so you're in good company. Good luck with your meds and feeling better soon. I have to go in to the gastro in two weeks, due to chronic constipation. I have to take 3-5 Senna a day or I won't go at all. I've gotten to 10/11 days without a bowel movement, and then have to head to the hospital for a major enema. I'm very worried as to what they'll find in my colonoscopy.

Please let us know how you're doing and what further actions they take. Take care of yourself!

Jana

[erik]

I thought it was cardio EP's that do the TTT... that is pretty bizarre (but encouraging in a way). Sheesh, that is a lot of stress on the system and hitting you right where it counts and when you're already down... suffer the TT then drain you of blood... etc. Quite an ordeal... no wonder you are sapped.

Hope you regain some strength & balance soon... and that the digestion can heal up with that treatment. I am not familiar with that side of things, been lucky so far. I wonder if taking the blood samples at that moment is going to give some extra insight... like a stress test?

[Janey]

Wow, what an appt! No doubt you needed a good cup of coffee to just get out of there. I'm curious, Janey. What kind of testing did your GI do. The upper part of the bowel- small intestine is so hard to get a good look at- yet your GI seems to have a really good idea of what's going on in there.

Are you on a prokinetic, in addition to the anti-B's? Which antibiotic are you on? What dose? Did he recommend that you take a probiotic to replace good bacteria being lost by the antibiotic? Excuse so many questions....my son and I both have similar issues.

In some ways your GI seems really good in that he made the connection between your dysautonomia & slow GI tract. Weird that he insisted on seeing for himself that you had autonomic issues with a new TTT. Is he at a major teaching hospital by any chance?

I'm sorry you're feeling so badly. I hope the medicine will kick in and start to make you feel much better without any further intervention.

Gentle Hugs-

Julie

Hi Julie! I've forgotten the name of the process that the GI did but it was something like "mammography" where it can tell which areas of your bowel are slow and which areas are normal speed and you have the tube down your nose and into your bowels. I also had a barium swallow with xray, an ultra sound and an endoscopy.

I was using metoclopramide before the appt and it was working 30-40% of the time which wasn't really good enough, so he put me on domperidone three times a day. The anti-biotic he put me on was Augmentin (as I'm from England it could have a completely different name where you are..) and then a two week break with probiotics and then back on a different anti-biotic. I haven't got the anti-bio from the chemist yet so I'm not sure what dose. I've been delaying 24 hrs before I take it because my POTS gets really affected by anti-biotics and I seem to get all the side effects!

I was also really shocked that he gave me another TTT, but there are three guys in England who work very closely together in EDS, POTS and Dysautonomia, and this guy is one of them. He is a neuro-gastroenterologist. I think because the country is so small and we only have these three experts, they double up on a lot of the testing. There was a cardiologist there, but my gastro was doing most of the instructing. He also managed to help me with advice on loads of my POTS symptoms, which was great. He is certainly the best doctor I've seen so far on dysautonomia, and I felt like he had a wide knowledge of the whole condition rather than just the gastro part. And yes, he is a professor at a major teaching hospital in the UK.

Have you also been told by the doctor that your bowel stretches? Do you and your son's bowels sound similar to how I'm describing?

Janey

[Janey]

Sorry to hear your having gastro problems too----BIG HUG to you.

I have a large 5cm diverticuli in small bowel, and 3/4 of large bowel covered in diverticuli.

There's rarely a day when I feel completely comfortable with my gut. BLOAT, BLOAT, BLOAT!

I'm lucky to "go" twice a week. Things just pile up in there until they can't anymore, then finally........

I had a lower GI, and this is where they found the excessive diverticuli. They were screening for colon cancer because my brother had it, and in fact he didn't survive and passed away in Feb. It was really sad, and he fought a good battle....but it hit the other side of his colon and got into 17 lymph nodes.

He survived almost 3 years, and it got his liver. Docs thought a regular colonoscopy was too risky for me at the time, so a lower barium enema/lower GI with double contrast was done. They usually do this to screen older people, or people who have a twisted bowel who can't have a scope.

When I went to the NIH EDS study in April 2008, the geneticist who was running the study saw my GI films and said this was way too many diverticuli, and I needed a regular colonoscopy for a biopsy. My PCP wants to do a virutual, and cancelled the regular one I almost had done last year. I cancelled one other time due to being sick with a virus. So here I sit, I'm going to see the surgeon who was going to do my original colonoscopy on Wednesday next week to discuss what we are going to do. I haven't been stable at all with my other health issues, so I have no idea what to do-----------I'm worried about my GI stuff. I think my EDS has a lot to do with my digestive problems, and so did the geneticist at the EDS study, but she felt something else is going on also. My regular EDS geneticist thinks my GI problems are related also.

Maxine :0)

Hi Maxine, thanks so much for replying. I feel better knowing that there is someone else going through it too. I'm so sorry to hear what happened to your brother and I can understand why it's a worry for you.

Does your GI have a similar view of EDS and the bowel as mine does? Mine said that because our intestines are so stretchy, food just enters them and builds up rather than moves along, causing pressure, soreness, diverticula and bacterial overgrowth. He said there was a part of my intestine that was so diverted and had so much bacterial overgrowth that it didn't push stuff through any more and had lost all "tone." Apparently it was relying on the propulsion from the part of the intestine that came before it, and the pressure that built up from other food that was coming through, to push it down.

Would you say that your GI troubles are where your worst symptoms come from? I'm not normally a fainter (except during the last TTT!) and as long as I take my salt tablets and beta blockers, my POTS is fine (just exhausting..) but my GI problems are, by far, the part of me that is going rapidly down hill...

Janey

[Janey]

Wow, Janey~

That was an appointment and a half! I know there are many of us who suffer from GI issues with dysautonomia, so you're in good company. Good luck with your meds and feeling better soon. I have to go in to the gastro in two weeks, due to chronic constipation. I have to take 3-5 Senna a day or I won't go at all. I've gotten to 10/11 days without a bowel movement, and then have to head to the hospital for a major enema. I'm very worried as to what they'll find in my colonoscopy.

Please let us know how you're doing and what further actions they take. Take care of yourself!

Jana

Hi Jana,

I really feel for you with the chronic constipation, that must be so difficult. Do you have EDS too or is this purely down to dysautonomia? Do let me know what news you get with the colonoscopy.

Janey

[Janey]

I thought it was cardio EP's that do the TTT... that is pretty bizarre (but encouraging in a way). Sheesh, that is a lot of stress on the system and hitting you right where it counts and when you're already down... suffer the TT then drain you of blood... etc. Quite an ordeal... no wonder you are sapped.

Hope you regain some strength & balance soon... and that the digestion can heal up with that treatment. I am not familiar with that side of things, been lucky so far. I wonder if taking the blood samples at that moment is going to give some extra insight... like a stress test?

Hi Erik! I know!! I thought it was only cardio EPs that could do it! I think it might be slightly different in the UK because, as I said to Macks Mom, there are three or four main doctors in the UK who cover the dysautonomia territory and they are a neurologist, a cardio, a geneticist and a neuro-gastroenterologist (I've seen them all!) and between them, they seem to cover a lot of ground. A cardio was present at the time though, but it was my neuro-gastroenterologist who was taking the lead. The gastro I saw was able to give me some great POTS/general dysautonomia advice too and I felt really looked after by him. It was really encouraging that he has an interest in the WHOLE disorder rather than just his area without taking other things into account. It was more holistic.

I think the blood samples were testing catechlolamines (sp?) do you know anything about that?

Janey

[Janey]

Guts problems = no fun.

Sorry to hear about your issues. I feel your pain!

Thanks! Hope you are okay, let me know how it's all going!

Janey

[Maxine]

Hi Janey,

My GI doc is really nice, and surprisingly he knew what EDS is. I don't think GI docs are that advanced here in the US in regards to the connection of EDS and GI issues. However, my GI doc thought my GI issues were connected to the EDS, but he just kind of faded away as far as any treatment plan goes. He wouldn't do a colonoscopy because of the POTS, and was afraid of sedation drug reactions. My PCP doesn't want me to get a regular colonoscopy because on my upper spine instability, fearing one false move could me IT for me.

I have a surgeon who's one of the nicest people I ever met in the medcial profession. She did my brother's bowel resection, and his incision was perfect! I just heard another woman speak about this surgeon, and she said her incision was perfect also. She was going to do my colonoscopy, and at one point we were ready to go, and then I got a virus. I though my streap throat might be back, and it turned out to be a very mild virus. I was so mad. They had to cancel it, as I needed to be in good shape for the colonoscopy. I felt so bad, and felt the surgeon might get tired of my junk and just drop me. My PCP feels I'm too unstable for a colonoscopy. He likes my surgeon and knows her well---he refers to her as a "good girl".

I'm really confused, and not sure what to do, as I am having more problems. I know this is really TMI, but when I pass gas it's really an odd smell, and this scares me-------------something doesn't feel right. Obviously my bowels aren't normal, and haven't been for years, but when I have any type of change it's scarey. Sorry for the graphic explanation, but this has worried me for a while. I'm surprised I don't have more pain and nausea. I'm bloated about 95% of the time, and the pain I do have is always on the right side of my abdomen, too low for gallbladder, and too high for apendix--------------and in the right spot of duodenum. This is where I have the 5cm diverticulum. They usually don't bother most people, but mine has been symptomatic twice with fever, and hihg white blood count. There was thickening of the 3rd and 4th portion of the duodenum, and some fat stranding which is telling of a past flare up.

Wednesday I'll be seeing that surgeon, and I'll discuss this with her. She is the most open minded of all my LOCAL doctors, and will most definately be happy to read anything on EDS/POTS ect. She's already read some of the information I have given her on POTS----or was it EDS? It might be both. I'm always pushing something.

I think my bowels stretch a lot also. I go days between "going", and I'm getting sick of it. No doubt my intestinal tone is poor. When I see my EDS geneticist, I will be discussing this. I'm sick of that little baby fist sticking in my right side of my gut feeling. I always get full very quickly when I eat. I can never eat a full sized meal. I haven't been able to do this for several years now.

It sounds like you have a very good gastro/neurologist, and it sounds like they care.

HUGS,

Maxine :0)

[Janey]

You are SO right about the "little baby's fist" poking into your side! That is exactly the way I feel too, and also on my right side. I know that, that part of the intestine is a difficult piece of bowel (I think I read somewhere that food has to turn a proper corner in it and it often gets a chink in it) and so it's no wonder we are getting diverticula there. But I'm right there with you on the baby's fist on the right side!

My GI doc was also really palpating my abdomen and said that he could "feel" the problem on the right side. Apparently you can also "feel" healthy bowel and not-so-healthy bowel through the skin of the abdomen. He must be a real expert to know how to do that!

If you don't mind telling me, what sort of smell when you have gas? Mine is always deeply rotten eggy, but occasionally has different, very odd smells eg. a burning smell sometimes! I always wake up with a metal taste in my mouth and if it's not metal, it's acid. Ergh.

Janey

Hi Janey,

My GI doc is really nice, and surprisingly he knew what EDS is. I don't think GI docs are that advanced here in the US in regards to the connection of EDS and GI issues. However, my GI doc thought my GI issues were connected to the EDS, but he just kind of faded away as far as any treatment plan goes. He wouldn't do a colonoscopy because of the POTS, and was afraid of sedation drug reactions. My PCP doesn't want me to get a regular colonoscopy because on my upper spine instability, fearing one false move could me IT for me.

I have a surgeon who's one of the nicest people I ever met in the medcial profession. She did my brother's bowel resection, and his incision was perfect! I just heard another woman speak about this surgeon, and she said her incision was perfect also. She was going to do my colonoscopy, and at one point we were ready to go, and then I got a virus. I though my streap throat might be back, and it turned out to be a very mild virus. I was so mad. They had to cancel it, as I needed to be in good shape for the colonoscopy. I felt so bad, and felt the surgeon might get tired of my junk and just drop me. My PCP feels I'm too unstable for a colonoscopy. He likes my surgeon and knows her well---he refers to her as a "good girl".

I'm really confused, and not sure what to do, as I am having more problems. I know this is really TMI, but when I pass gas it's really an odd smell, and this scares me-------------something doesn't feel right. Obviously my bowels aren't normal, and haven't been for years, but when I have any type of change it's scarey. Sorry for the graphic explanation, but this has worried me for a while. I'm surprised I don't have more pain and nausea. I'm bloated about 95% of the time, and the pain I do have is always on the right side of my abdomen, too low for gallbladder, and too high for apendix--------------and in the right spot of duodenum. This is where I have the 5cm diverticulum. They usually don't bother most people, but mine has been symptomatic twice with fever, and hihg white blood count. There was thickening of the 3rd and 4th portion of the duodenum, and some fat stranding which is telling of a past flare up.

Wednesday I'll be seeing that surgeon, and I'll discuss this with her. She is the most open minded of all my LOCAL doctors, and will most definately be happy to read anything on EDS/POTS ect. She's already read some of the information I have given her on POTS----or was it EDS? It might be both. I'm always pushing something.

I think my bowels stretch a lot also. I go days between "going", and I'm getting sick of it. No doubt my intestinal tone is poor. When I see my EDS geneticist, I will be discussing this. I'm sick of that little baby fist sticking in my right side of my gut feeling. I always get full very quickly when I eat. I can never eat a full sized meal. I haven't been able to do this for several years now.

It sounds like you have a very good gastro/neurologist, and it sounds like they care.

HUGS,

Maxine :0)

[juliegee]

Hi Julie! I've forgotten the name of the process that the GI did but it was something like "mammography" where it can tell which areas of your bowel are slow and which areas are normal speed and you have the tube down your nose and into your bowels. I also had a barium swallow with xray, an ultra sound and an endoscopy.

I was using metoclopramide before the appt and it was working 30-40% of the time which wasn't really good enough, so he put me on domperidone three times a day. The anti-biotic he put me on was Augmentin (as I'm from England it could have a completely different name where you are..) and then a two week break with probiotics and then back on a different anti-biotic. I haven't got the anti-bio from the chemist yet so I'm not sure what dose. I've been delaying 24 hrs before I take it because my POTS gets really affected by anti-biotics and I seem to get all the side effects!

I was also really shocked that he gave me another TTT, but there are three guys in England who work very closely together in EDS, POTS and Dysautonomia, and this guy is one of them. He is a neuro-gastroenterologist. I think because the country is so small and we only have these three experts, they double up on a lot of the testing. There was a cardiologist there, but my gastro was doing most of the instructing. He also managed to help me with advice on loads of my POTS symptoms, which was great. He is certainly the best doctor I've seen so far on dysautonomia, and I felt like he had a wide knowledge of the whole condition rather than just the gastro part. And yes, he is a professor at a major teaching hospital in the UK.

Have you also been told by the doctor that your bowel stretches? Do you and your son's bowels sound similar to how I'm describing?

Janey

Yeah, that's the test Mack had too. here in the US it's called an antroduodenal manometry. Mack had his TTT DURING the manometry- torture. He barfed on the table as he fainted, with the the tube down to his bowel- poor baby. You've been through the wringer too, Janey. I'm so sorry. I'm glad you were on a prokinetic. To me that seems like the most important med you need. Getting the food to move faster, will ultimately resolve all of your problems. I hope the domperidone works. The other med you were taking is known to be a pretty bad one here. We call it reglan. It just has a lot of neurological side effects because it crosses the blood/brain barrier. (The domperidone doesn't- so that alone should help you feel loads better!)

I know you have GREAT docs. I have never even heard of a neuro-gastroenterologist, but THAT'S exactly what Mack needed when he was at his sickest. I'm a little surprised that they are alternating the antibiotics with the probiotics, but very happy they are doing both. It's so important to replace the good bacteria in your GI tract, especially when it's depleted by an antibiotic. Mack takes his antibiotic in the AM, probiotics at noon, and then more antibiotics at night. You can't take them at the same time as the antibiotic will ultimately kill off the good bacteria supplied by the probiotic.

I've never heard that Mack (or I) have stretchy bowels....but that makes sense- especially in your case. We don't have EDS. Our docs say an unknown connective tissue disorder.

I hope you feel loads better soon. I think you will!

Julie

[anna]

Hi Janey,

Can I ask whether you got to see Prof QA on the NHS or did you have to go private?! one of my boys is still having lots of bother with his guts and we have had no joy with local GI paed.'s.

Anna

[Janey]

Hi Janey,

Can I ask whether you got to see Prof QA on the NHS or did you have to go private?! one of my boys is still having lots of bother with his guts and we have had no joy with local GI paed.'s.

Anna

Hi Anna!

I saw him on the NHS! How did you hear about him? Does your boy have EDS/HMS or do you suspect he is hypermobile? If so, you can get a referral to Prof QA from Prof Rodney Grahame, the geneticist. Would you like his email address? He is very responsive via email.

Janey

[Mary P]

A happy Sunday to all,

I've just asked my new doc to refer me to a gastroenterologist who was recommended by a niece. I'm so glad to have read all your comments because I had no idea what to expect except that I'm due for a colonoscopy. Now I wonder what other news may be in store for me. Thank goodness for all you wonderful friends on DINET!

One of the disillusioning aspects of my journey is that I've had to find out about every specialist I've seen, mainly from friends, and then ask my doctor to refer me. My new doc, at least to date, is no more 'with it' than the last. She hadn't even read the 2 years of records that she wanted from my previous doctor.

I'll be going to a teaching hospital and this makes me feel confident that something will be done. I hope the gastro will refer me to a neuro gastro or any other specialist if he discovers this is necessary.

I'm scared of what's ahead but also very grateful for all your posts. Thanks to all you who could teach our GPs a great deal if they'd only believe and listen.

Mary P