# A long road to IBS



## deannawol (Jul 9, 2015)

I've always had issues with my bowels, even when I was a child. I used to go between constipation and diahorrea on a weekly basis. My mum used to fill me up with Fibrogel and then either dose me with syrup of figs or duclolax. I used to drink have a glass of Andrews Salts every couple of days when I hadn't had a BM in over a week. On really bad weeks, she used to make me down a small glass of epsom salts - the most horrific of all drinks. This was just a fact of life for me.

I've been to A&E (ER) to get enema's when that magic constipation number crossed 10 days. I've had days when every doctor and nurse on duty in the A&E has stopped what they were doing to look at my Xray, because a 10 year old girl should not be that full of ... stuff. As I got older, this eased off a little but I still had good days and bad days. My BMs were generally quite hard, pebbly and thoroughly dried out. I didn't think much of it, to be honest.

I shouldn't have been too surprised then when, at the age of 27 while driving to London, I literally had to pull off the road and curl up in pain as cramps ripped through my lower abdomen. This happened twice or three times in rapid succession and I had to find a bathroom PDQ. I pulled into a service station and emptied everything out. I stayed there for about ten minutes, until there was nothing but air coming out and then cleaned off and was almost back to my car when I had to go again.

This happened most mornings and because I had to drive for my job, I started budgetting more and more time for my journeys so that I could pull off, just in case. I knew every service station and how long it took to get there from the previous. The cramps got worse over time and I ended up sitting in my car and crying as I doubled over in pain most mornings. After a month of this, I couldn't take it any more and went to my doctor.

My doctor took one look at me and said that it was possibly just a stomach flu or some other gastrointestinal issue. That didn't sound right for me, but I took the offered course of antibiotics and left. Two months later, and a hell of a lot more cramps - which were now coming at every hour of the day - I went back. I was told, in a rather unsympathetic voice, that sometimes these things can last 3-4 weeks. I shot back that it had been 12 and it was getting worse. My mum had diverticulitis and it was starting to remind me a lot of what she was going through. I persevered anyway and kept at it, going back every couple of weeks to see what he had to say this time.

I started keeping a food diary. He looked at it and eventually noticed a pattern. His recommendation at this point was that fruit and veg was setting me off and he told me to stop eating fruit and veg. It didn't stop the cramps, but they started to be a little less common (dropping back to 1 flare up every 3 days rather than every day like they were). I kept following up on this, but for the next two years, this was his prescription.

Maintaining a diet with no fruit and veg had several other side effects, especially on my ability to heal cuts and scrapes. Eventually, I asked for a referral to someone who could help me with my diet, i.e. a nutritionist or a dietician. I was told that it wasn't possible. I appealed and got a referral based on my weight rather than my condition. I'm overweight - no problem admitting that but I have a major problem with an organisation who won't refer you to a specialist unless you can tick exactly these boxes and no others.

I saw the nutritionist and she didn't give me much hope. She told me to start keeping a food diary again and to lose weight. I didn't go back to her after the second session because her advice was to join Slimming World because they do recipes and maybe they could help.

I was starting to spiral down towards an anxious depression and called my mum in tears during a particularly bad attack (I was curled up on my bed, crying my eyes out). Mum told me to book a flight home and that she would book me an appointment with our family GP back in Ireland. I booked some time off and flew home two weeks later. I was now over two and a half years suffering with debilitating cramps, diahorrea and constipation that made my childhood bouts look like a walk in the park.

My GP talked to me for ten minutes and said "I think I know what it might be. It's sounding a lot like IBS but I have to warn you, IBS is an exclusionary diagnosis, and that means we have to rule some things out first." Within the next five minutes, she'd called the local hospital, gotten me on the schedule to have a colonoscopy the following day and given me the prescription for the horrid laxative that I'd have to take to get myself ready for the procedure.

I went down to the hospital the next day, checked in and was given a robe and a bed. I got my anaestesia and was rolled into the procedure room. I got to watch the camera feed as they did it and ask questions. I saw the walls of my colon shiver and then clamp down on the camera. The consultant doing the procedure hmmed and then waited for everything to relax again. I fell asleep some time after that.

Two hours later, I was speaking to the consultant in his offices and he could confirm that there was no colonic cancer, nothing to worry about in terms of serious or life threatening conditions but that yes, I had IBS and that my colon was particularly sensitive. I had my diagnosis. I went back to my GP afterthat and she sent me to the pharmacy to have an intolerance blood test done.

Two weeks later, I had an email with my results. I had a list of foods that I was intolerant to, including diary, lactose, gluten, yeast, potatoes and eggs. It all made sense and I could modify my diet to start excluding some things.

Honestly, at that point, I wanted to go back to my doctor and shove the piece of paper under his nose and tell him that with a little more compassion, he could have saved me two and a half years of pain. Instead, I changed surgerys. Seemed easier and more productive.

It's eased up since then, to almost manageable levels, unless I start to get stressed. Unfortunately though, in the last six months, it's started to angle up in intensity again. I'm now experiencing dizziness, fuzzy headedness, bloating to the point where I need to take my bra and knickers off the minute I get home and just climb into the roomiest pjs that I have, and a pain in my side that makes it hurt to breathe deeply.

I've got the feeling that I'm going to have to go back soon and ask them to review my meds. I'm worried that it's going to be another uphill fight.


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## acureisoutthere (Jun 28, 2014)

Hi Deannawol,

Have you ever heard of the human microbiome ? We are 10% human, and 90% bacteria. Bacteria cells outnumber human cells by 10 to 1. These bacteria play a large role in our health, or lack of. For some reason or another the bacteria in our gut can get out of balance. The good, helpful bacteria get knocked out, and the bad ones take their place, thus giving you problems.  Please do some research on this.

"Friends with Benefits, the Human Microbiome" is a good video on YouTube to start with, and there are many others.

Once you understand this, please start learning what a microbiome transplant is. It is basically taking the good, helpful bacteria from a healthy person and transplanting it to someone that is sick. Done properly, it can change the microbiome and restore health. Dr. Borody has been doing this procedure for 25 years and has been having success treating quite a few diseases. FMTs have been studied and declared safe and effective by the University of Alberta. People have resorted to doing these, in their home, and having success.

Changing the microbiome can also affect our weight. I lost 13 pounds after my transplant, without even trying. My IBS symptoms are gone. It worked beautifully.

You can learn more about it here :

http://www.ibsgroup.org/forums/topic/243081-i-recently-fixed-my-ibs-d-its-gone/

I hope you find the relief you are seeking.


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## deannawol (Jul 9, 2015)

I've wandered down the pro-biotic and live culture routes before. Because dairy is one of my triggers, anything that involves cultures in yogurts are out (actimel, benecol, etc.) - I'm just going to be sitting on the toilet regretting my life choices.

There was a product, Symprove (http://www.symprove.com), that I tried. It contains live and activated bacteria and it's part of a 12 week course designed to improve your digestive floral health. It's non-dairy, non-gluten so I thought "score!". It's mango and passionfruit flavour and yeah, that really didn't work for me. I honestly had to run straight to the bathroom after drinking it and throw it all back up.







I'm tempted to go back and try the original flavour.

The only problem that it costs about £20 for a 500ml bottle (£60 for 4) and you're supposed to drink about 100ml a day, for 12 weeks. That's 17 bottles of the stuff or about £340 (or £240-£260 with their current offers). Sorry for being a downer here but I don't have a lot of spare money at the end of the week/month. Investment for a possible health gain and all that, I get but if it's between that an paying my electric at the end of the month. GF and DF food is already massively more expensive than regular off-the-shelf food.









I'm trying these at the moment: Digestive Support with Calcium capsules from Asda 

I'd love to say that they've immediately done the job, but I do feel a little better since I started taking them. They're worth a shot for the rest of the month at least, right?

The problem I have with FMT and that is that... And I'm going to be a little impolite here - a) I don't know anyone who I can ask to poop in a baggie. b ) I'm a little freaked out by adding someone else's poop to my body. c) I really want to exhaust all other options before I take the brown road... Yes, I know that may be a little small minded of me and I'm glad that it worked for you but... I'm not sure I'm there yet, you know what I'm saying?


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## acureisoutthere (Jun 28, 2014)

Hi Dean,

I understand completely. There are some challenges to doing an FMT. I agonized over who to ask for quite a while. I didn't want to ask anyone that had any kind of a health problem. All I can suggest is to keeping thinking about it, and perhaps you'll think of the right person to ask.

Once I decided who I was going to ask, I started out my telling them about how this problem is really affecting my life, all of my symptoms, and how I would do just about anything to fix it.

The next time I seen them, I sat down with them and explained the human microbiome, and what it really is about. There are some really good videos on Youtube about the human microbiome. I even got my donor to watch a few videos so they really understand it's mostly bacteria, helpful bacteria.

I then started telling them how doctors are curing people of diseases, using an FMT. It helps to do your homework, so you can explain this properly.

Then, finally I explained I wanted to fix my problem in the worst way, I didn't want to live like this anymore, and asked them if they would be my donor. It was an immediate "yes!".

I think it's important to educate yourself first, and then educate your potential donor. It helps.

I appreciate your initial apprehension. It's understandable. Once you do some reading, you'll realize the number of doctors doing this procedure is growing substantially each year. In fact there are over a dozen companies racing to be best in market, or first to market, with a pill or something to treat this problem. It's really got some people's attention. A doctor in Canada, Dr. Louie, is trying to bring to market a pill with the microbiome in it. I personally dislike this approach because it means you are putting bacteria that normally live in your large intestine, into your small intestine, a completely different ecosystem. A doctor in Duluth does FMTs from the top down using a nasogenic tube. I'm skeptical of this approach also for the same reasons.

The PowerofPoop website is very informative. The Fecal Transplant Foundation is also good.

I certainly appreciate where you are at ! I too tried all other things I could think of. I know what you are saying friend ! Believe me I was right there too. In the mean time, I suggest to keep learning about what the human microbiome is, and what microbiome transplants are too. I really understand. It took me a while to get there, but I'm happy I did. Every time I use the bathroom, I am thankful now. Every time I eat, I am thankful too. It really has an impact on one's life.

I've got a friend, his wife has IBS. Had it for 40 years. She went to a lot of doctors and didn't get any help. Some told her it was all in her head. (how rotten) Just goes to show how little some doctors really know. They just haven't studied it yet. Sure, it's new. But it is fixing people's problems.

I'm just waiting for more people to try this, and report on how it changed their lives, so others here will realize that there is hope, that there is a way to fix this, and not just suffer.

People right now are getting FMTs from doctors to cure C. Diff. and it is literally saving their lives. And they don't have problems afterwords either. Maybe it helps to realize that these bacteria, that's really what we are talking about, we couldn't live without them.

They help us digest food, they help our immune system, and when they get out of balance so to speak, it sure can make our life miserable.

So, in closing, I really appreciate where you are at. I do. Study, learn, when you are ready, you are ready. I am willing to help, that is all I am here for.

best wishes


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