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Graphic photos but I need opinions could this be Crohn's or Colitis?

Clhiggs
Clhiggs

Hi All,

I do not have a diagnosis yet due to Covid I've been forced to video appointments with my GI. I'm having a colonoscopy and endoscopy end of July for my symptoms.

My symptoms have been on going for about 9 months now. It first started with extreme burning in my stomach, lots of diarrhea, pain above belly button slightly to the right side. I was taking nexium recommended by my PC but it didn't help me and my GI told me to stop taking it but I still take it because I'm convinced my stomach is going to burn a hole through itself assuming I have an ulcer. Recently my symptoms have changed, I am having extreme squeezing pains in that area above my belly button to the right. It almost feels like a fist has ahold of my stomach, I picture a scene in a movie with a beating heart in a fist and the fist just squeezes it. Sometimes these pains wake me in a dead sleep, I get very nauseous and sometimes start vomiting. I was having a lot of diarrhea up until about a month ago. I went from going to the bathroom up to six times a day to a complete halt. I got so backed up I had to take laxatives. This constipation and pain has been a real issue lately to the point I can barely eat without feeling like I just sat and had three meals in one sitting. I cannot go to the bathroom without miralax help right now, and when I do go it's straight diarrhea and small amounts with large mucus clots. I don't feel like I'm fully emptying my bowels. I'm having what feels like pulsating feelings in my guts. Almost like a alien is living inside me...those feelings have migrated and are not found in one area. I've had them where my pain is above belly button and also lower left but not pelvic low. Still have a feeling of stomach eating itself daily. I have become so fatigued it's getting hard to get anything done around the house and even wake up in the morning. When I do wake up, I am pale with almost no color to my lips and I'm in a fog for hours. My GI suspects Crohn's.

Do any of these symptoms sound similar to anyone's experiences before diagnosis or even now?! I literally feel like my stomach is slowly killing me.

I took two pictures of what my bowel movements have looked like recently and these are two separate movements and a gist of how much I'm releasing at once. The darker areas are clumps of mucus. The color is usually on the yellow side when I wipe, and the smell has been hideous almost vomit acid smelling. I also haven't had a gallbladder in 17 years my PC ran a CT to make sure my ducts were okay before the whole covid showed up, so that's been checked.

20 Replies
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Do you have a gallbladder? You said that you haven’t had a gallbladder in 17 years but the ducts were okay? Pain above the bellybutton, to the right side is where your gallbladder is. I used to have problems with mine, but had to have it removed, life is so much better!

The Nexium that you have been taking could be the cause of some of the problems you are having. What you listed are some of the side effects of Nexium. See if your doctor can put you on something else, maybe Zofran aka Ondansitron (?sp).

Any blood when you are able to poop?

Any family history of Crohn’s?

Personal tidbit, when I was finally diagnosed with Crohn’s 9 years ago, I had the 3 Fs: fat, fair skinned and in my forties. Any of those apply?

I have an ileostomy now because nothing would put the Crohn’s in remission. When I was in my flare, I was constantly loosing blood to the point I had less than half the amount that was I was supposed to have and had to have blood transfusions left and right; would get EXTREMELY bloated, like I was 11 months pregnant; excruciating pain starting near the bottom of my left lung all the way down to my left side, by my hip bone and across my lower abdomen; constant queasiness; within 5 minutes of when I would start to eat, I had to go to the bathroom immediately and would spend 20-30 minutes praying that God would stop the pain or just stop me; was pooping anywhere from 15 to 25 times a day; very anemic; dehydrated; malnourished, even though I was overweight; CTs with IV contrast always showed my intestines to be enlarged / thickened and if I wasn’t in the bathroom, I was sleeping.

Hope this helps more than it scares you!

Clhiggs
Clhiggs in reply to AZ_M

No gallbladder, the pain is a bit lower than where my gallbladder pain was before it was removed. My gallbladder almost killed me, I was hospitalized for two weeks liver shutting down and pancreatitis. That pain was higher up tucked under my rib. The doctor mentioned sometimes ducts left behind can be clogged so that's why he did CT. I am overweight and fair skinned but mid thirties.

My aunt has Crohn's and her daughter (my cousin) on my father's side. I am having terrible bloating, I told my spouse I felt pregnant I have a pretty flat stomach despise being overweight and it gets so bad I can barely bend forward. I stopped the nexium about two weeks ago to see if I see a change in the burning sensation in my stomach...still the same so I know it wasn't helping.

I haven't seen any bleeding that I know of from my bowels. I went from having to run to the bathroom constantly and fear of eating out to maybe having two movements a week with help from meds. Which tends to be diarrhea, quick small amount. I did vomit up some blood one day, when the pains were so bad I spent the entire day throwing up in crippling pain from the tightness in my stomach.

I do have SLE Lupus which I was diagnosed at 21 years old (I'm 34 now). I've developed a rash around my neck and chest which I have written off as Lupus rash but I don't know maybe it is related too? Having to wait is so frustrating for answers, I am often tempted to go to ER but I know they'll just run scans then tell me to follow up with my PC. I'm glad I got the GI referral just hope I don't drop dead before I actually get to see him and have my procedures.

Hi Clhiggs

I was diagnosed with Crohn’s disease 30 years ago aged 20. It was a horrible time and your symptoms sound very familiar. Diarrhoea so bad I could not get off the loo. And as a result very weak & drained, probably due to the loss of vitamins & minerals. I took dioralyte to rehydrate & replenish. As well as various meds including steroids from my GI. I’ve had relapses in the early years which eventually led to surgery and removal of a part of my large intestine 10 years ago. Luckily no stoma was required and since then I have been taking Mesalazine as a maintenance drug. I’ve had no major relapses since and if there’s any upset I usually know what’s caused it, spicy food, too much dairy or fruit & how to get through it. There is light at the end of the tunnel even if you don’t feel like it at the moment and unfortunately in these strange times everything is taking a little longer to access. Best of luck 🍀

I've been having similar issues but diagnosed IBS. However everyone is different. I sincerely hope they can find a cause for your issues and find a successful treatment xxx

Clhiggs
Clhiggs in reply to Viklou

I was diagnosed with IBS years ago from having gallbladder out. But now they need to figure out what is causing all the new symptoms that have been crippling me.

Viklou
Viklou in reply to Clhiggs

I had mine out in 2015. Ironically I'm having exactly the same issues as you. I thought they were bringing my Colonoscopy forward but no I'm still on a waiting list. I'm not sure how much longer I can cope with what's happening. I'm struggling to eat solids and no appetite. I can't pass gas without crapping myself yet I can't pass much, except similar to you. I'm so exhausted its untrue

Clhiggs
Clhiggs in reply to Viklou

Mine is July 30th and they are doing a endoscopy too. Hope I get answers. Will definitely be updating once this is figured out. I actually haven't been passing much gas very little but my stomach feels like it's full of pressure.

Viklou
Viklou in reply to Clhiggs

I had some form of blockage 4 weeks ago. The pain was horrendous. I couldn't pass gas or anything for 4 days. I was attending ACU on a daily basis as they were thinking appendicitis. Ultrasound was inconclusive but blood work ok. They said I could be admitted and get a Colonoscopy within the week or he would try and push for it to be done in two weeks, I chose the latter. On review, I thought there's no way it will be done in two weeks but thought at least within 4. I found out yesterday I'm just on a waiting list, no date has been arranged. With IBS you're left to deal with it. At least no appendicitis lol. I'm largely on a liquid diet and this is helping I've been taking laxatives to keep things moving but only passing small amounts. Pain central lower right which comes in waves. I am better than what I was thankfully. So just keep going until I can go no more. I'm contemplating asking for antidepressants to get me so out of it I don't feel the pain. This gut brain tie could be severed. i suppose with not knowing what day of the week it is won't matter, as my brain fog is also terrible I don't know what day of the week it is at the best of times anyway.

Viklou
Viklou in reply to Viklou

Baring in mind I was diagnosed IBS d. Going anywhere between 4 & 15 times a day. To hardly anything much over the last few weeks.

Clhiggs
Clhiggs in reply to Viklou

Sounds so similar to me!

Your symptoms sound similar to mine I had severe pains in the same part of my body, diarrhoea and vomiting.

I was diagnosed with Crohn’s in the small bowel and I was vomiting because I kept getting blockages due to a narrowing in my bowel.

I hope you get sorted it’s really not nice being so sick.

Clhiggs
Clhiggs in reply to Maceyy

This is what I'm afraid of, a blockage. I have been doing liquid diets for three days when I'm in so much pain and cannot eat and it helps relieve my pain. I'm afraid they're going to tell me I have a partial blockage. Did you have loud stomach sounds after the pains? It will feel like squeezing then sometimes my stomach is so loud after.

Maceyy
Maceyy in reply to Clhiggs

Oh yes the noises were very loud and sometimes actually were uncomfortable! I stopped eating for days when this happened to me and that was the only thing to help me until I was put on steroids. I hope you get something sorted as you can’t live that way x

I think Maceyy is on the right track.

The area is typical for terminal ileum Crohns, and is the commonest site, where the appendix is. They took my appendix out first.

Sounds like you could have a stricture, which could account for the constipation. This would also cause vommiting.

Clhiggs
Clhiggs in reply to ian16527

Yes they thought because of the site it was my appendix too! Another reason for the CT

ian16527
ian16527 in reply to Clhiggs

IN the olden days, they used to use the 'small bowel enema' torture , using a naso gastric tube to feed barium straight to the bowel. It was my Gastro docs favorite method.

Im glad they use CT now.

Just another note, some of my triggers are fresh fruit, oranges, apples and pears. I love them as well.

Hope everything improves soon

Thank you all for your input. I hope I can get my life back soon and this sorted. I am so exhausted everyday.

I've had Crohn's all my life. I am 40 now and was diagnosed in the year 2000 however, it took many years for me to get a proper diagnosis. You must have a colonoscopy in order to be diagnosed properly. Many people with Crohn's have similar symptoms and other symptoms that may be different. In my case I had lots of diarrhea and severe pains in my abdomen on the right side. Sometimes I couldn't go the the bathroom for days. I was vomiting a lot even when i had nothing in my stomach to vomit. I had issues with fistulas and accesses as well. I ended up having a bowel resection surgery in 2008 and have been relatively well since. All I can really tell you is that you will have to wait and see the results of your colonoscopy and speak to a gastroenterologist. Just hang in there it should get figured out when you have a colonoscopy.

Clhiggs
Clhiggs in reply to KEG1

Thank you so much!

Hi there

Just a quick reply at the moment as I'm not well with a urinary tract infection following a flareup of what could be one of my bowel conditions..

I can identify so much with your post and to the others here who have replied..I send hugs to you all as it is really hard at times dealing with these issues.

Before I forget due to my brainfog have you had a faecal calprotectin test if not I would ask for one asap. Its a test that checks yr stool sample for inflammation, my current gastroenterologist informed me it became available about a year after I was seen when I was fobbed off by a different consultant who actually told me he didn't have time to read through my notes! I also had severe endometriosis which had caused a lot of damage & adhesions to my bowel and I often had "relief" from my bowel issues for a while after surgery for the endo for which I had 7 operations.

As yrs went by my diarrhoea and pain would come in bouts where I would assume it was related to the endo and try to deal with it by various self help means. I was a staff nurse in theatre and at one point during my rotation I had to request not to scrub for certain procedures when my bowel was "playing up" as I couldn't guarantee I could stay at the operating table throughout the procedure!

I spent many yrs attending our gp practice who thought it was linked to my endo or ibs or the fact I had my gallbladder removed aged 28.

Sorry going on a bit...but the pain diarrhoea and fatigue you have I get all of them but for me it has been very tricky to pick through my symptoms and history to work out what is what. In 2008 I started to get worse and was by then working in a clinic part time only a few half day shifts and still struggling. It became impossible to leave the house to get to work unless I didn't eat anything so I changed my hrs and it helped a little but it got harder so eventually I was referred back to gastro and had more thorough tests as nothing I was taking would stop the diarrhoea. I had a couple of hospital admissions for dehydration and severe pain too. I have diagnosis of terminal ileitis (Crohn's), microscopic colitis, diverticulitis and functional gut disorder.

My tests included small bowel mri, stool tests for Calprotectin (although mine was only mildly elevated) the bloods showed I was very anaemic despite no periods and low in b12 which my consultant said was an alarm bell for Crohn's as b12 is absorbed in the terminal ileum where Crohn's usually starts. I also became unable to tolerate oral iron or many other vitamins and unable to take antibiotics all of which would start a flareup.

I would say keep some sort of health diary doesn't have to be anything too indepth but it can highlight something important which is easy to forget when not absorbing nutrition! I used to be so on the ball could remember anything but thesedays I keep a dated memo record on my mb which I can refer to during gp/hos appointments if necessary.

Try to see the same gp if possible I have good doctors luckily one of which notices when I'm needing to have iron infusions in hospital sometimes before I do.

Look at your diet if possible under the supervision of a dietician who understands fodmap diet.

I also take a good probiotic and am careful to avoid wheat and dairy but again you haveto be careful not to eliminate food groups as it is easy to do when trying to manage pain. I take regular buscopan, mebeverine, pain relief and have budesonide which is a steroid which acts locally in the gut. I try to only take it when I'm really not improving by other measures though, but it is sometimes the only thing that helps. I also have questran powder to help stop diarrhoea which I think may be linked to the colitis or could be bile acid malabsorption after having my gallbladder removed.

Try to keep hydrated difficult I know and in the last yr or two I've also had episodes of constipation something I've never had so understand the difficulty your facing. I get nausea and feel generally off my food and uncomfortable when I'm constipated I've not had a narrowing of the gut as such but it was queried twice if I had a particial obstruction that resolved itself during which I had severe pain and couldn't move please seek medical advice if that ever happens. Sometimes fybogel can help both constipation and diarrhoea but again please ask yr doctors if it is safe for you.

Sorry for the long reply I didn't think I'd be able to post for long as not feeling well but wanted to help if I can and hope I have a little. Please remember there is a lot more awareness of ibd now and more support available. We are all here for you, let us know how you are doing when you can.

Take care xx

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