32 yo nobody is helping me

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I want to say this all started on Halloween but when I really think about it started roughly 5-6 years ago. But when I was 20 I began to have bowel problems went through a bunch of tests and diagnosed with IBS. Went on a high fiber diet plus psyllium for the next 3-5 years when I began to notice that my breakfast was coming out of me after lunch. Thought to myself that can't be good so I stopped the psyllium and just ate normal. Everything was fine for awhile I thought I was back to normal. Then I began getting these gas pains in my luq and ruq wrote them off as IBS. I started noticing incomplete bowel movements and pencil thin stools again I thought it was IBS. so I started taking psyllium again worked like a charm. Then roughly 2 years ago it stopped working went to dr who also has IBS he told me to take 3 heaping tablespoons of whole psyllium before bed plus a probiotic. This worked for a couple years with occasional constipation problems l. If I'd stopped the pencil thin stools would come back. Then this past summer the gas pains in the luq and ruq came back and became more frequent. This lead me to repeat er visits repeat ct scans egd colonoscopy and blood tests everything "normal". I started to feel like I was getting better when I then again stopped the psyllium but this time bowels kept moving this was before the colonoscopy. I went ahead with the scope which this young dr did and told me everything was normal. After the scope is when things got real bad. Constant burning pain followed by spasms inability to pass gas bloating which leads to more pain weight loss multiple er visits ct scans everything "normal". I finally was able to see the supervising gi at her practice he told me did they ever tell you you have Diverticulosis. I said no. now it's been roughly 2-3 months since that visit and I was given antibiotics but I couldn't tolerate the side effects. They didn't see it necessary to aggressively treat me for diverticulitis. So currently I slowly increase fiber and add psyllium but then the burning and spasms get worse. This leads me to nothing then I get pencil thin stools and backed up with air. Slowly add in fiber spasms and pain return. Also mucus increases each time this happens. What do I do? My WBC count is fine no fever. Am I repeatedly irritating a mild smoldering diverticulitis that drs say isn't there? I really am left with no options. A low fiber diet backs me up so bad. I tried miralax but everything is still pencil thin psyllium is the only thing that cleans me out but then I get the spasms and the burning pain that leads to inability to pass gas. Then back off and pencil thin stools. If I fast for most of the day then eat a small meal that triggers a huge gas movement and I feel a little better. This leads me to believe it's gas not stool that's causing pain. And the gas is trapped behind this diverticulosis that's either inflamed or infected from fiber. Help me somebody please????? I would be so grateful.

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    Have you ever tried to work out if some foods cause the pains and others do not?  You can do that be keeping a food diary of what you eat, and when you get the pains.  Most people with Diverticular Disease (when you have both Diverticulosis, leading to Diverticulitis, and an abnormal bowel muscle, leading to spasms in both DD and IBS) find certain foods are triggers.  I personally cannot take gluten, wheat and full fat.  For others it is dairy, or nuts, seeds, popcorn, red meat.  Everyone is different.  I also take probiotics and pure aloe vera juice.  When my tummy is bad I also drink peppermint tea.

    It also sounds to me as though you have been unable to establish a regular routine, as you sound as though you constantly increase and decrease foods and medication.  I have a routine.  Psyllium first thing in the morning and 12 hours later.  Small regular meals like poached egg on toast, blended soup, steamed fish with veggie puree, fresh fruit with skins and pips removed.  Probiotics half way through the day.  This is what my tummy has come to expect and has settled into a routine.  I do get the occasional spasm and wind, but I can normally work out what I have eaten that triggered it (nobody is a saint!!).

    Think of the Diverticula as a sort of appendix.  It is a bulge in the bowel wall, going nowhere.  Food gets trapped in the bulge and that's when infection starts.  So the diverticula are not actually blocking the bowel - it is most probably stools, with the gas backed up.  There are several NHS leaflets posted on the Internet explaining all this, and it might help you to read them.  This is a difficult condition to deal with, and everybody has to find their own best solution.  I have lived with this now for 16 years and was able to work and take part in competitive sport, until my hip gave out.  Best wishes.

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    • Posted

      Thanks for replying. Yes I've done the food diary and everything. I've cut out gluten and dairy and I have had success with psyllium it's just currently it keeps irritating something in that left corner. I've seen the scans my transverse colon is completely distended behind this part of my colon that's closed off most of the time. Sometimes it opens and I'm able to pass huge anmounts of gas but for the most part it closes off. I went to a pain dr when he listened to ny belly he said you have air but it's not normal you have sounds up too but it's completely silent below. I'm thinking it's a smoldering infection and everytime I add psyllium or fiber back in it further irritates it. I had a steady diet for years with little to no problems psyllium at night and it all came out in the morning and passed gas throughout the day. No I only pass little amounts of gas at night and I have pencil thin stools.

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    It sounds like you are in a vicious circle. I was told I had DD last September since then it's been trial and error. I have now started fybergel to see if that helps me I was on antispasmodic tablets and albran but I couldn't get off the loo As the dr for some fybergel a lot of people on here swear by it Hope you get sorted soon. Are you in the U.K. Or USA

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    • Posted

      I'm in USA. Thanks. I keep going back to the colonoscopy my pain was subsiding then and the scope caused all kinds of new problems. It brought all this on. The psyllium works but after a few days on it I get white mucus and I start spamming in the corner where I have the tics. Leads me to believe I have an infection or irritation of some sort.

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    • Posted

      It's funny you should say that about the colonoscopy mine as been worse since I had it last year. I managed before that yes I had bowel problems but not as bad or as much pain seams to me it could have been that set me off

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    I've read all the literature and studies I would say I'm well educated in the field of gastroenterology as it pertains to myself. I need to talk to people who have this and who have experienced diverticulitis and what has brought it on and their relationship with fiber and fiber supplements because it seems to me that fiber can for some people make this worse or if they don't know they have a smoldering mild infection cause things to become worse by increasing fiber. I appreciate any replies. I'm thankful for any insight into this.

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    • Posted

      I had diverticulitis over Christmas I put it down to chocolate and fizzy pop I was laid up for 3 days was given strong antibiotics that sorted it. I am trying all sorts of different things to see what works for me. Here in the U.K. They don't seem to care about DD very much when I saw my consultant she just gave me a web sight to look at about wind

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    • Posted

      You can't have fiber as long as the colon is inflamed. You have to give it time to heal, I had to do liquid diet for a few days and then low fiber for a couple of weeks until healed.

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    • Posted

      Juices without pulp, soups that have nothing solid in them, jello, ice cream that has nothing solid in them, popcicles, etc. It was hard but I was so sick i didn't have much of an appetire anyway. It is best to start it as soon as the symptons begin, I started the day after once I was diagnosed and started the antibiotics. Point is to give the colon a rest so it can begin to heal.

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      I have had this disease for a few years now.  My last flare was in February 2016.  I do not eat any whole wheat, coconut,  nuts, seeds, popcorn, fruit or veggies with skins on or very fibrous vegetable and fruits    I take Miralax every day, have pencil thin stools and don't care how thick or thin my stool is.  I was two weeks away from surgery when I put the brakes on and decided to give a change in diet a try.    All I know is I've been pain and infection free.  I think fiber is the problem, at least insoluble fiber.  Anytime I have had a flare, insoluble fiber has been the culprit.  I do keep a food diary every day just in case.  I've also read that the scope can slightly perforate the bowel and that is why they don't do a colonscopy if you are just getting over a bout of diverticulitis.  Hope you feel better.  This is an awful disease.  I keep a prescription of Amoxicillin just in case of a flare if I am traveling.  The last time I was sick, I was on Flagyl and Cipro.  Never again.  Amoxiciilin works just as well for me.  

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      They wanted to give me amoxilillin but I am allergic to it. I agree never again for Cipro and Flagyl, it made me feel so much worse from the side effects. I just had a colonoscopy and was told to get back to high fiber and take Metamucil daily.
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    • Posted

      Flagyl was horrible ! I only take BACTRIM now whenn needed, I did the flagyl for almost 6 days and regret every bit of it!!!! So linda instead of two antibotics u just do the one now?
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      I'm allergic to all the penicillin families... thats why they gave me bactrim and Levpro but finshed up on bactrim only...You take the Bactrim twice a day...does anyone esle have regular bowel movement and then dirreah after that couple times in same day?

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    • Posted

      Yes, just the amoxocillin.  Thank goodness I am  not allergic to it.  I swear the Flagyl was almost worse than the diver.  My last bout last February, it was Amoxicillin - the time before that it was flagyl and cipro.  
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      When you say get back to high fiber, what exactly do you eat?  Honestly, I avoid fiber like the plague.  I think the docs are wrong.  We already have the pockets in our bowel so how does high fiber help.  I just wonder why a percentage of us go on to develop the itis when a good portion of the population of a certain age in the US and UK have the pockets but no itis ever.  Miralax has been my miracle drug.  Just hope there's no future side effects they don't know about.

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    • Posted

      Fiber is what keeps you cleaned out and bowels moving threw.I just had a colonoscopy and 3 more polyps had to be removed and I was just told to take metamucil every day also. I'm following instruction and it seems to be working. I eat higher fiber cereal, whole wheat bread, fruits and vegetables.

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