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#1 Roby-in-RI

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Posted 08 September 2020 - 06:44 PM

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Hi everyone

 

I am desperately seeking help with a condition I have been struggling with for over a year. I apologize for the length of this, but I believe the story of how I got here is very important.

 

I was a 46-year-old healthy guy once. I have been struggling with chronic constipation and colon issues for 8 months, also on and off constipation before that for 5 months ever since some major events happened to me. These events all happened around the same time. I was placed on broad-spectrum antibiotics, Cirproflaxin and Flagyl, then had a colonoscopy due in irritation/pain in my colon (which came back clear with biopsies), then was diagnosed with gastritis after an endoscopy and put on 40mg of Prilosec. I feel one, or all of these things contributed to me being chronically constipated with IBS. If I even have IBS-C. Before this, I didn't have digestive problems at all, and I eat very well.

 

 I feel lost right now after a year of figuring out what has worked for my stomach (which is finally getting better!), but since then my poor colon, which is now back to being completely backed up, irritated and painful, is affecting everything I do. It is very debilitating.

 

I refused to try laxatives at first since I was very concerned with dependency and harming/altering my colon in the long term. But after it became chronic (in January), I gave in, and tried so many things from until I finally found a diet that didn't upset everything, and a combination of laxatives that allowed me a complete bowel movement every morning. I was great for 4 months (mostly due to 1 Senna tablet a night, plus Miralax and Magnesia at different times) from this April to August, it was amazing. I was finally living! And recently everything just stopped, and now I am at my wits end. But I am determined, and I thought I would journal my history, as I have done with my nutrition and medications that I have taken during this whole time.

 

It began in April 2019 when my dog and I were attacked by an off-leash dog. I saved my buddy, but I got bit in the throat in the process. I was put on Ciproflaxin and Flagyl via IV and orally for one week. May through June I had colon pain and irritation on and off. In June it got worse and I had a colonoscopy to check things out and it came back normal with biopsies. Come July, I had severe stomach pain and was put on 40mg of Prilosec daily. Then I had an endoscopy done in which I was diagnosed with Gastritis. Then it was 40mg Prilosec every other day.

 

I could barely eat anything without being in pain. I was down to 800 calories daily and lost nearly 60 lbs. in three months’ time. Sure, I needed to lose weight, but not like this. I was 230 in July and I went down to 158 by October. Also, in October of last year, I was eating a bit more but the constipation started to come and go. This is where I thought the Prilosec could be causing it. I had no clue. But I continued to keep a nutrition log of all the foods, calories, and medication I’ve taken since July 2019, even until today. I made sure to eat only foods that didn’t upset my digestive tract (i.e.: cooked veggies, oatmeal, certain fruits, lean protein, and plenty of fiber, when tolerable, to help with this new constipation problem that was getting worse by the month. I stayed off alcohol, caffeine, never was into spicy or fatty foods anyways, and anything harsh as well.

 

By November/December of 2019, the constipation was more frequent, my colon very irritated, and I couldn’t even lean back in a chair because of the pressure/pain on my right side. I underwent multiple scans; liver, gallbladder, kidney, and a CT which confirmed the constipation again, backing up into my small intestine. Then I made the choice to find more help as I found another Gastroenterologist that took my constipation a bit more serious as the debilitating condition it is. In December I also tried many fiber supplements and stool softeners (Metamucil, Citrucel, Fibercon, Colace) but still kept getting backed up, as if my colon was just slowing to a crawl over time since last July. I even had a rectal motility test that showed no problems. By January 2020 the constipation became chronic with no relief. I was given Linzess and then Amitza to try which helped a little but the side effects caused very strong stomach pains I couldn’t keep taking them. After this, I had a breath test done for SIBO, Methane, etc. which came back negative. Then I was then told to take Senna, and although I was concerned about the dependency issue or worse. At this point (March/April 2020) I felt I didn’t have a choice, but Senna did help a lot.  

 

From April until August 2020 I had finally found a combination of things that work (1 dose Miralax in the morning, 1 dose Milk of Magnesia at night, and 1 Senna tab at night). I took these daily to feel somewhat normal. All this while I was tapering off the 40mg Prilosec to 20mg every other day. (As of today I’ve been off Prilosec and taking Pepcid 10mg as needed for the past five days. The less pills the better I feel!) My weight went back up to 170 and I got back to working out and walking an hour a day!

 

Back in August, I tried to taper the Senna to every other day to see if there was any positive change, but after a week, I got backed up again quickly. This irritated my colon further and I had to go back to taking Senna every day. Now, as I write this during the end of August, I find the senna has stopped working and everything is backed up, irritated, and painful once again. The longer this goes on, the less I’m able to eat. Some people can have a few BMs a week, that’s not me, I’ve always gone once or twice a day to feel good/normal. Right now, if I can have a complete BM I feel great the whole day (which by now has to be via some stimulant along with a lot of magnesium, miralax, and colace), but if I don’t, I get an irritated and painful tender colon very quickly, and throughout the whole day and night until I can have a complete BM again.

 

I am hoping to find a GI Doctor/Specialist that works with a team, and has an approach that is connected with other specialists to help guide me through this. A GI psychologist, and a GI Dietician maybe? I have a referral to the Beth Israel Deaconess IBS Medical Center in MA, and i'm crossing fingers they have better answers.  I have a nutritionist that I have been seeing but I don’t feel she has any experience with people who have IBS Constipation (IBS-C) or Chronic idiopathic constipation (CIC). It could be the simple fact that it’s a side effect of the PPI, which I’ve read is known to cause constipation and other major digestive issues. OR it could be the fact that the Colonoscopy gave me IBS like it has other people. I have no idea. Completely no clue. But I feel the PPI messed me up over time tremendously. Hopefully now that I'm off the PPI, as some time goes by who knows, maybe I will see some positive things happening. I'll report back if they do.

 

I just feel like I’m back to square one and out of answers right now, and while I’m hopeful there are answers out there, I feel like I’ve tried everything, and every professional that I’ve talked to feels like they are out of options, while I’m left to fend for myself scouring the internet. Sometimes it’s so frustrating I end up just breaking down in tears.  I am writing this as a last hope and any information or direction would be tremendously appreciated. Thank you for taking the time to read this.

 

Rob

 



#2 Cendy99

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Posted 16 September 2020 - 08:45 AM

Rob, I wanted to reach out because I live in the same area as you, except north of the city! Im so sorry you are struggling. I know how awful this is! Mine started up back at the end of January at 43 years old. I have had issues in the past, but nothing this consistent. Its brutal. I had a normal colonoscopy 3 1/2 years ago (due to some hemorrhoids...sorry TMI) so no one seems very concerned. When my daily symptoms started in January/February, I tried dealing with it on my own, but finally decided to see another doctor at MGH for my current issues...Alternating diarrhea and constipation, not able to pass gas, a CONSTANT irritated feeling in my backside like there is poop in there, but further up, gurgling as soon as I eat or even look at food sometimes! Its awful. I had a full blood work up in June, SIBO test and 3 weeks ago, an abdominal X-ray. When the X-ray results came back normal, the doctor was like, What do you want to do?! I was like, really??!! What do I want to do??!! Its so frustrating and I just want to have my life back! This is going on 9 months. I will be the first to admit that I am a hypochondriac and this is the latest, but its hard not to think something is seriously wrong! Like you, I have lost weight...nearly 10 pounds, from 125 down to 116...I just feel like ###### and have developed so much fear around eating. I am a super fit female normally, CrossFit athlete, in fact! Ive never had a bad diet. Sometimes I see out of shape, overweight people and think, how on earth can I be the one suffering with this??! What the doctor doesnt seem to understand is that every medicine makes me feel worse and dysregulated. Its not even worth taking. Im going to give Metamucil a try next. At least its natural. I wish I had answers, but wanted to empathize. At least you had some relief over the past year. Its such a feedback cycle, not feeling well, stomach issues which feeds the loop. If you find a helpful doctor, please let me know because Id love to get another opinion.

#3 Roby-in-RI

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Posted 16 October 2020 - 12:14 PM


Hi Cendy99,

 

If I find a helpful doctor I will definitely let you know.

I'm in the same boat as yourself when it comes to working out and staying in shape. I'm at a steady 170lbs now and the only way I can keep my weight/energy up, and eat enough is to stay on a cocktail of laxatives (colace, miralax, senna and magnesium 1000mg in the form of Mag 07 from Vitamin Shoppe). I exercise every day when I have the energy. Being diagnosed with Hashimoto's Autoimmune disease doesn't help things, but at least I'm on medicine to regulate my thyroid levels now. 

 

But I'll let you know how my visit to Beth Israel Deaconess goes. I have an appt in Nov. They have an IBS Center just for people like us. My home state of RI has nothing like that. I'm on my 3rd Gastro doctor and even he admitted they just don't know enough about the brain-gut dysfunction, why it happens, or even enough about the microbiome in our gut and how it pertains to IBS-C or D. I even tried Motegrity, and after 2 weeks there was no change at all. Guess I'm one of the unlucky ones that it doesn't work for.

 

I found a few links that may help get better information from. Googling blindly is a horrible/stressful/frustrating way to learn info about these issues because everyone's body is different. 

 

https://www.aboutibs.org/

Great no nonsense information. Good section on how to find the right doctor. There's too many horrible stories out there about doctors telling their patients that it's "All in your head" or "Just try to eat new things".  Those are perfect examples of doctors that either don't want to take the time and care for you, of they are ignorant to the real problem. They are no help and it's time to find a new doctor.  

 

https://www.bidmc.or...sorders-program

Here's the site for Beth Israel Deaconess's IBS Center in Boston, MA. They even work with specialized Gastro Nutritionists and Gastro Psychiatrists in house which I was happy to see.

 

I hope you find some help, and if you do please let me know how it goes. 



#4 flossy

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Posted 17 October 2020 - 06:10 AM

Hi Rob -

 

Sorry to hear about all your intestinal woes. Please read the below link whenever you have the time, it should help (click on the below link to view):

 

http://www.ibsgroup....tion-aka-ibs-c/

 

Good luck with everything and do keep us posted!



#5 Bergamot

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Posted 19 October 2020 - 02:58 PM

Your posts resonated with me. So sorry to hear about the dog attack. That really can be traumatizing.

Throughout my childhood, I contacted horrible bouts of bronchitis, usually upwards of 3x per year. I missed LOTS of school & remember breaking down in tears as I could never get used to the size of the pills & the quantity. Antibiotics, steroids & the like. I grew up rather sickly & underweight.

Fast forward to my adult years & I was working in health food stores during college days. I learned so much but relatively little to help me with what I thought was just normal, having bowel movements 2 maybe 3 x week and having a gut that felt nauseous, bloated & unsettled most of the time. I tried various diets, macrobiotic, vegan, etc but found I got extremely lethargic & brain fog.
My undiagnosed asthma up to this time continually got worse until I finally went to see a specialist. Not only did I receive a diagnosis for asthma but was tested for a host of allergies, nearly all of which came back positive. Further blood work was done but they found nothing. The doctor at this time (I was in my late 30s) was concerned about my stomach issues/IBS-C & encouraged me to go for an endoscopy as my wheat allergy was off the charts bad. I remember the doctor saying, “we really hope you are a celiac because it will explain most if not all of your health issues.” I tested negative. The doctors were perplexed & put me on a number of prescriptions, including Prilosec, as you mentioned. I went wheat free, mainly gf for a few years & introduced wheat back thru einkorn & spelt. My IBS-C never went away thru this time.

I felt lousier with what I ate & just figured that this too was normal for me & I needed to just accept it. My stomach did seem to calm down a bit on a macrobiotic diet (out of all the alt treatments I have tried) but I couldn’t keep up with it in the long run & it didn’t do enough to end my constipation.

Fast forward to today & being anxious about COVID, I was desperately looking for any answers as I have no health ins & cannot get prof health. I had been having nightmares nearly every night. Meditation wasn’t helping, nor was prayer. Nothing. It was definitely something physical that was causing my mental anguish & I was tiring of the laxative routine I found myself on (taking a dosage at least 1x per week if not 2x).

I tried doing the fermented foods, homeopathy, herbal remedies, specific teas...nothing was working on the IBS-C part.

I then re-stumbled across intermittent fasting & started it, thinking I had nothing to lose. This was nearly 2 months ago, and about a week or so into it, my constipation has disappeared. My rock in the stomach feeling has gone after nearly every meal (now I usually only eat 2 meals per day, skipping breakfast & simply having brunch late morning/noon-ish). I don’t take any digestive enzymes anymore (not sure these were even working). I don’t avoid any particular foods anymore & even though I haven’t needed to lose weight, I have started getting the hormonal puffy abdomen/belly as I am pre-menopausal. Within a month, I lost 2” off of my waist. I only do moderate forms of exercise, nothing too strenuous. I have found my bits of anxiety has diminished, my nightmares have nearly completely disappeared & I have no painful or straining movements & am going every day, some days 2x with the occasional day that I don’t, then the following day, I go 2 or 3x.

I still don’t think my stomach is at 100% but it is the best it has been...probably ever. I typically do a 14 hour fast about 2 or 3x per week, aim for 16 hour fast 3-5x week & I just feel so much better. My seasonal allergies have calmed down very noticeably, my food cravings have diminished. My digestion (even when I eat allergens or even the occasional junk food) seems to be working nearly perfectly. I cannot recommend this enough.

I did do the therapy thing for my PTSD (abused by my parents) & bouts of anxiety/depression. It didn’t help me, but can certainly help others. Healing my gut is my #1 priority now as I feel that my problems are all largely in my gut.

I am from your neck in the woods as well (MA) & had been a long distance runner (up until last year) & slim my entire life. So I always looked like the epitome of health, despite suffering internally.

Keep us posted with your progress & discoveries. At the very least, you know you are not alone. :)





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