Feel like giving up
8 years ago I started getting very bloated with bouts of diarreah and consultation. I would eat and my abdomen would balloon up and be so uncomfortable. The pain was mainly on my lower right side.
The doctor sent me for a sigmoidoscopy which I thought was a bit pointless at the time since it’s on the other side of bowel where my pain was. It came back clear all but one pile.
I pushed on for tests thinking I could have a gynaecological issue and they gave me a laparoscopy which they found nothing but said I had a lot of very movable bowel.
Since then I’ve had MRIs, bloods, fecal tests, sehcat scan, ultrasounds, and yesterday a colonoscopy which I have been pushing for, for years!
The procedure was agony! I was sedated with gas and air but they could only go as far as mid transverse due to ‘looping’ and my extreme pain, I was so upset! I really wanted to see what was going on in my right side of bowel, so now it just seems pointless like they’ve missed the bit they needed to see! They took 4 biopsies but said it looked normal, but I would expect that since my bowel doesn’t hurt there, only the lower right side which feels swollen and almost tight and knotted like something is there all the time.
Over the years my symptoms have worsened. I now have orange/yellow foul smelling ribbon stools which are mushy and loose, multiple times a day! And pain and bloated in my lower right side.
Symptoms have also began to affect my nerves it would seem, as for a couple of years I’ve started with right side groin and hip pain which they have no diagnosis for, it flares worse when my bowel is bad. And I also get a pain in my right side of my head about an inch above my ear, and ringing in my ears.
The symptoms peaked about a year ago and I had a strange TIA or migraine type turn where I ended up in A&E and they said I had a fast heart rate but didn’t know why and suggested beta blockers.
I’m worried that I have disease in my lower right bowel, and that it could be scarred and hardened, and that this is missed as they can’t seem to reach it with the camera.
The doctors are so dismissive now due to the amount of tests I’ve had. They are getting quite rude and short and lately have said things like ‘it’s just IBS live with it!’ And ive literally cried down the phone.
This colonoscopy was a last resort and I had to persist so much for it! They kept saying it’s invasive and they just doing it for my peace of mind as they’re sure I have IBS nothing else.
And now I feel like I’ve screwed it up because it was agony and they couldn’t get round all the way to the part they needed to check! I don’t know what to do next. If they tell me that’s it and it’s just IBS and that’s the end of the road. Then I don’t know what I will do! I can’t live like this with orange diarreah every day, it’s exhausting I feel so drained! Tired, energyless! I eat so healthy but feel like all my nutrients are draining from me! My hair has thinned so much over the years and my gums are sore, this cannot be normal 🙁
Any advise?
Hi there. I can share in your frustration. I too have been having a similar issue. So your story caught my attention. It started with me about 2 1/2 years back. And things have gotten on the miserable side ever since. When this started for me (pardon the language) ,I was taking big dumps after a meal. But the dumps became high force diarrhea. Such as needing to find a toilet fast. Almost always after eating,it became 10 or so repeated trips to the toilet to drain the diarrhea. It put me in shock,mostly because at times , say work,I ended up have to devote 45 minutes after lunch making trips to the toilet. I had tried every over the counter product imaginable, from Metamucil to any diarrhea relieving products, including diet experiments. A sore ass from the toilet paper and no more solid terds. I consulted with my doctor at this point, as this was becoming very disruptive. Even pooping my pants when sleeping. First they said it was IBS. But I could not see it that way. Only producing volumes of yellow bile diarrhea. The only thing that gave relief was to drink Imodium. Which did temporarily stop the uncontrollable stomach and rectum. But only temporarily.Then it would start again. Starting to go nuts with this. As feeling dizzy sitting on the toilet. So The gave me cholestyramine to bulk the stool. It would work once then become useless like everything else. I finally got the Colonoscopy. But,they could find nothing out of the ordinary. I then got sent for an endoscopy. Saying it may be mild gastritis, and gastroparesis. They did diagnose me with type 2 diabetes, saying this may be a symptom of such. As I have been taking the diabetes medication for about 2 years now also. But the diarrhea continues. They checked all my organs with ct scans and ultrasound tests. But say they appear normal. There just never seems to be any consistent relief. Unless I fast or drink immodium. So like you, I am still searching for solutions. As I feel,the doctors are missing some important point. The waiting time for any testing is a long process. So my next item will to look for SIBO. As my research points to this as a possible cause. I now have normal blood sugar, and have even taken digestive enzymes, but still have the same issue. Well, if you have any breakthroughs on the subject, please let me know. I will do the same for you. Thanks. ...Scott age 52
Seek a second opinion, take feelings out, to a point. Be clear, concise, direct, take someone with you. Blood work rules out a lot of IBD and other problems... not all. Heat helps some of the pain. Have you been tested for gluten intolerance, dairy etc.
Be your own advocate. Watch your fiber, veggies, nuts. Try a food diary etc. White diet, rice, potatoes, pasta, starches if not gluten intolerant.
I was misdiagnosed, it won't take you long, trust me! The meds I was on helped a bit to relieve some of the Crohn's, colitis symptoms they diagnosed.
(I'm familiar with right side pain and long bathroom stays; now it's gone) Thanks to finding a good doctor. A Great surgeon found out what was truly wrong. Something rare and unusual for someone in my age bracket.
There are good doctors out there, try, believe, breathe. It is difficult, you are not alone. Not sure if this helped. Be well.
Hello can you tell us about what was wrong with your GI track. What did it worked with you?
Hello. I was misdiagnosed with Crohn's & ulcerative colitis 20 years ago. You name a prescription I possibly tried it. I always had right side pain, sometimes so strong it sent me to the ER (they just gave me oh you're constipated). I had good doctors.
Constantly in the bathroom, like run to the bathroom, be there for 45 minutes. 20 yrs later.
Dec 2019, 3 ER trips, a terrible call to my gasto doc. My husband practically carrying me into the hospital. 1st stay was 7 days, lots of tests, pain I can't describe, opioids didn't work.
3 doctors, 2 surgeons.
I have a rare and unusual situation, bowel intussusception. This is where your intestines wrap inside out to your rectum like an inside out sock. As my husband suggested to the docs a cow's twisted stomach. Quite a few tests later and only a spec of Crohn's detected. I was taken off the Crohn's & UC diagnosis, meds etc.
Once they removed said twist, part of my colon/intestines etc. I had a temporary loop ileostomy. However, after the I still had too much diarrhea & ended up with a permanent colostomy. I'm very happy, healthy now... no pain, still control my stool/output with Miralax now. I can eat things I haven't for years.
One test I had was a defecology. There was another to test the strength in the rectal area. Phew, you lose all dignity.
Remember, this is one person's story, their experience. The shortest explanation I can give. I'm not a doctor. I feel I can be a good advocate to uplift you & share my experiences.
I did switch gastro doctors 1 year before all the above. Had wonderful surgeons & an extremely awesome support system behind me.
Always feel free to reach out to me or anyone. We're here for each other and you.
Be well.
Pam
Hey
! I am sorry you're having such a rubbish time with everything! Can I just clarify, as you said initially that the pain was in your left side, which is where a flexi would have looked, but you said later on that you wanted them to have a look at the right side?
Anyway, being misdiagnosed for a long period of time is something I hear time and time again from the community. They did initially diagnose me with IBS, but my disease progressed so rapidly, it was only a few weeks later that I had to present myself at A&E and ended having surgery to remove my colon!
A capsule endoscopy would be able to look all of the way through your GI tract. You can learn more about the diagnostic tests and procedures here: https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures/
All I can really do is echo the above in that you need to be your own advocate. I really do know how hard it is when you feel unwell and no one is listening. In the past, I have been at a point where I thought I had no fight left in me to keep battling with the professionals. It's crap that we have to! But, you deserve to feel better, so you'll have to keep pushing. Maybe speak to someone else at your GP surgery, or even swap surgeries? I swapped mine two years ago because I couldn't get anywhere with my current one, and it did finally get the referrals I needed once I had moved.
You got this! You are worth it!
~ Sahara (team member)
Your symptoms as so much like mine and worst. I have found that eating "healthy" is worst for me. I was diagnosed with Crohns disease 15 years ago. I have had some bad flare ups over the years. I'm actually going through one right now. Probably the worst one ever yet. I have found that food high in fiber are the worst for me. I used to love to eat vegetables and salads. I cannot even have one spoon now. I have eliminated almost everything that is healthy. I hope you find comfort soon.
