SIBO THIRD TIME

[tallbear]

Hello everyone,

Just wondering if anyone has any experience of repeated instances of small intestine bacterial overgrowth.

I am eighteen months post Ivor Lewis two part oesophagectomy, and apart from SIBO I still suffer with rib and back pain (for which I take Tramadol) and common occurrences of food dumping and hypoglycemia and fatigue.

I know we are all different with recovery times etc, but every time I start making forward progress I am struck down with sibo, which saps my energy and gives me serious bloating and flatulence. (if it was an Olympic sport I'd be up for gold)

I dropped from ten and a half stone (pre op) to seven stone (6 months post op) I have managed to get back up to seven and a half stone and in truth I really do eat much more than I did before I had the operation. A different diet of course to try to avoid the dumping, but it's a bit of weird science because things I could eat last month cause food dumping this month, which is frustrating and makes if difficult deciding what to eat.

I am a vegetarian, I can no longer eat any bread or cereals or pastry type things and this past couple of months cheese has been causing dumping.

Trying to give people a background is like writing war and peace!

Back to my original question, has anyone had three or more bouts of sibo, I have had all sorts of antibiotics, but as soon as they wear off the sibo gradually comes back. I have pro biotics every day and am on :- lanzaprozole, Tramadol, doperamine, buscopal, loperamide and creon.

Any ideas would be greatly appreciated

Thanks

[brucemillar]

Hi Tallbear

We are somewhat similar. I am a veggie and also find that what I can eat one day will trouble the next. I also sufer from "severe Hypoglycemia" which has been life changing. I saw Jason Dunne in London Bridge for what was suspected to be bacterial growth, that was causing a multitude of issues (as you describe). He advised me to stay away from any pro-biotics "for a while" and I must say, that has made a big positive difference, with all of my bad side effects.

Bread is just impossible for me now and is almost any doughy food. It just bulks me up instantly and for quite some time. Now here is the weird bit. Garlic bread with Pesto goes down pretty well. I do spread the pesto fairly thick on top. So it may be that the Pesto is lubricating things? but I can manage that.

Meal times are not my favourite time of day now. Every evening meal will bring some level of discomfort. I have come to the conclusion that my stomach is tiny and anything more than morsel of food starts to stretch it. I hate to see my family looking uncomfortable, so I try and get through it with a smile. But two or three times a week I will have to make myself sick to relieve the pressure. The alternative is to eat so little at any mealtime that it makes a mockery out of sitting at the table.

So in summary. If I eat tiny amounts when I feel like it, I am am pretty good but others are not so good.

Maybe try and get to see Jason Dunne.

Good Luck.

Bruce

[tallbear in reply to brucemillar]

Thanks Bruce for your advice,

strangely although I have felt sick and urged a few times since my oesophagectomy, I have never actually vomited, I thought it was something to do with the new function and position of the stomach not being able to contract and push the food back up to do the job. Perhaps I was wrong to think that.

Though I must say that I don't think you should be making yourself sick, you need the nutrients from the food.

I shall ask about seeing a specialist like Jason Dunne. I am at St Marys Paddington with my treatment under Prof Hanna.

Thanks again and good luck with your continuing progress

Richard

[Hidden]

I agree that going to see a good gastroenterologist (indeed like Jason Dunn) is the answer. I know of one person who was treated with three months on cycles of ciproflaxin, doxycycline and erythromycin, but you really need to see somebody familiar with how the gut flora get affected and it is actually quite a specialist area to be able to get this right.

[tallbear in reply to Hidden]

Thanks Alan,

Yourself and Brucemillar have the same solution so I shall try to go down that avenue, I don't have another appointment until September so I think I will speak to my specialist nurse and see if she can get something organised for me.

Thanks very much for your good advice and good luck with everything

Richard

[Hidden in reply to tallbear]

Yes, it is definitely not the thing to wait for the routine clinic

[brucemillar]

Tallbear

My reason for self induced vomiting is purely to stop the pain caused by me overeating, or to be more precise, overfilling my tiny stomach. I am unable (it seems) to detect how much is too much, until it is too much. I am getting better at recognising how much I can manage. But any change in the type of food, makes a change in the amount I can keep down in comfort. Yorkshire puddings are an absolute no. I know not why, but they just simply blow me out. Salmon is another that fills me up very quickly and causes me pain, as are some cheeses. These are small issues now and I am realising that is more about just learning to adapt. Jason Dunne is very good. He listened, and I liked that. More importantly he put me on Acarbose to control my hypo's. That made a massive positive difference in giving me back some control. My train commute was becoming impossible, with the real fear of collapse always present. I am now fine and able to manage it.

I read this and fear that I sound like I am whinging? I do not mean that. I am so grateful for what these people did/do for me. Getting used to the new plumbing is challenging, party given my determination to try and be as normal as I can be.

I do wish you well.

[tallbear in reply to brucemillar]

Hello Bruce, Thanks for your reply I hope I didn't offend you, I certainly didn't intend to.

I am very much the same as you in most respects, I think one of my problems is quantity! I try not to eat too much but it is so difficult when you are sitting around a table with family and friends not to eat. I should have learned by now because I always suffer afterwards. And as we have always been inclined to sit around a table and eat and have good conversation it's something I would hate to do without.

My stomach is now just a transit tube as it has been changed into a tube and reconnected quite high up in place of my oesophagus, and as I understand it my pain comes from stretching the intestine where it joins the stomach tube.

Another thing I wanted to ask you was do you get discomfort in the throat and difficulty with swallowing sometimes almost as if there is a big pocket of air stopping anything from going down?

I was mortified when the Professor explained to me what he was going to do to my body, but there was no alternative because of the position of the tumor.

I agree with you as well about feeling like we're whinging but this is a good sounding off board and like you I have nothing but respect for the people who have looked after me so well, but also strive for a greater degree of normality in life. We seem to be following very similar paths

Good luck with your recovery, with luck we will both get there!

Best wishes

Richard

[brucemillar in reply to tallbear]

Richard

We could be twins (there's a thought) Yes you are mirroring my symptoms. Absolutely no offense taken in anything you said ;^)

I always have a very mild almost background sore throat that I just live with. I think that it is easing or I am just getting used to it. Either way it doesn't really bother me now.

Like you my stomach is is now a sleeve and really tiny. I'm told it is smaller than the palm of my hand and I have very small hands.

I get the identical "pocket of air" and it can feel like things will not go down past it, but they do. Very rarely will food or drink get stuck. I notice this is worse if I am rushing around and stressing over things and do think it is just wind/trapped air.

I also get (and this sounds very odd) what feels like stuff is fermenting in my chest and pushing back up my throat. This happens with certain drinks - White wine being a favourite. It is like my innards are in some kind of spasm, reacting to that mouthful only. I could drink something else at that point and be fine.

After my illness and surgery, I resolved to try and be a better father. In my head I thought that having family meals at the table was a good start - no telly on, just family and chat and a nice meal. It does work, but can be spoiled sometimes with my digestive comedy, if I have to head for the loo at warp speed. We are persevering and it is getting better.

James Gossage did a fantastic job explaining my plumbing to me in a mechanical sense. That works for me and really helps me to stop panicking everytime something goes wrong.

In a rather black fashion, It's good to hear you have the same issues and concerns.

Bruce

[Hidden]

As far as i understand, getting read of hydrigen sibo is easy. If you have mixed or methane is very hard. I have not managed. Antibiotics distroy your colon flora. I know they say it doesnt but its not true... one sntibacterial that seems to work for difficult cases is Atrantil which is used for methane. The only think that has worked for me temporarly is Atrantil,6 pills a day berberine-for hydrogen-5g a day, betaine hcl,5 with each meal and creon 10 000,2 with each meal. You can also experiment with seraptasse or lactiferin which are biofilm disruptors. Monolaurin or just coconut oil which affects the shell of the merhane bacterias.....This is only for the bloating that comes under 1 h after eating....the rest can be easily solved. But methane sibo is hard to get rid of as they are not bacterias. They have some knowledge from animal research in trying to keep down methane in cows...there is a new research about statin drugs or red rice yeast....but there is no safety info yet...