Colitis, Terminal iletis or Crohns? - Crohn's and Colit...

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Colitis, Terminal iletis or Crohns?

Sunita77 profile image


I had my gallbladder out in June 2021. Straight away I then suffered from urgent severe diarrhoea, bloating, yellow poo, fatigue, excessive flatulence and exhaustion. My GP ordered a calprotectin test in September which came back at 222 and I had a repeat one in December which came back at 430. My GP wrote to my local Gastroenterology department at the hospital for advice. The consultant mentioned that it could be Bile Acid Malabsorption or bowel disease. I was then referred to Gastroenterology but because my symptoms were getting worse I rung them up and was told that because of Covid it would be a year before I was seen!

Two weeks ago I suffered 7 days of non stop trips to the toilet which was up to 12 times a day. I wasn't eating anything and still going to the toilet. I drunk fluids as I didn't have an appetite at all. I had severe diarrhoea, severe abdominal cramps, extreme fatigue that I was sleeping during the day, fever, feeling hot and cold, headaches and aches all over my body. I rung 111 and I was lucky to see a GP out of hours as it was bank holiday Monday. I was referred straight to the hospital because my right abdominal side was tender. He believed it was appendicitis. When I got to the hospital I had bloods taken which showed inflammation and a CT scan. The results of the scan took ages to come back so they decided they were going to keep me in for the night. Luckily the results came back so I didn't have to stay the night. The scan showed that I had s small infraumbilical hernia that contained a small loop of bowel but no obstruction. I also had chronic inflammation in my terminal iluem and caecum. They thought it could be inflammatory bowel disease such as Crohn's. They suggested a colonoscopy to rule it out. I told them of my current situation that it was already being investigated and they told me to get in touch with the Gastro team. I was discharged with Colitis/Terminal iletis.

A bit about my medical history. I have had bouts of diarrhoea on and off since 2006. I was diagnosed with Gastritis in n 2009. I was then verbally diagnosed with IBS the following year . I ended up getting married in 2012 and in 2015 I had a complicated ectopic pregnancy which resulted in an emergency laparotomy as my tube ruptured. The surgeon said I was lucky to be alive and that it was 1 of the worst cases he had seen in a while. I was discharged but only to go back in 3 days later with a DVT and multiple PEs in my lung. I was on warfarin for a full year. From 2016-2018 I suffered with abdominal cramps, diarrhoea, tiredness everyday. I worked as a nursery nurse and I was finding it difficult to work as it was a physically demanding job so I reduced my hours. It was in June 2018 when I felt really ill. I hadn't pooed for days, I was sick and bringing up brown/green fluid. I had fever and was exhausted. The GP put it down to an UTI. I was given antibiotics which didn't help as I was getting worse. When I went back to my GP I was severely dehydrated. I was referred to the hospital told it could be a kidney infection. I was put on a drip which helped a bit. I had an ultrasound scan which showed that an incisional hernia was obstructing my bowel. I was told I might have needed a temporary stoma bag but luckily I didn't as with the small bowel resection surgery they only removed 10cm. When I was discharged and I got home I had wound dehiscence. It took 3 months to get better! Later on that year I was also diagnosed with severe sleep apnoea and now use a CPAP machine. From 2018 onwards I began to suffer from constipation and sickness. I had pain in my upper right quadrant with mid and upper back pain. My GP referred me to a Colorectal surgeon. He was lovely. He was the first doctor to listen to me. He ordered a ultrasound scan which diagnosed me with gallstones. He also mentioned a colonoscopy which I was happy about because I though maybe it was more than IBS and thought I would be getting answers. The colonoscopy went well. I found the moviprep difficult! They found apthouous ulcers in my terminal iluem and I had biopsies taken which came back normal. I was happy it wasn't anything serious and just IBS!

With my diagnosis of Colitis/terminal ileitis I rung up my local Gastroenterology department and which was strange and lucky that I managed to get an appointment for the next week! I feel that after 16 years I might be finally getting some answers!

I'm sorry for the long post! I'm interested in if anyone has been through anything similar? How likely is it that it could IBD? If so I had my last colonoscopy two years and nothing showed up apart from the ulcers. Could this be due to current active inflammation? Is Colitis/terminal ileitis normally linked to Crohn's? Thank you for reading!

6 Replies

As you have recently had your gallbladder out I would take a guess it is the excess bile acid causing it or at least making things worse.I had this after gallbladder surgery and was put on Colestyramine which almost instantly stopped the problem, I also have ulcerative colitis but since sorting the bile acid malabsorption I’m 100% better.

Sunita77 profile image
Sunita77 in reply to bantam12

bantam12 thanks for replying. Yes I thought it could be BAM as I've got all the symptoms as I've become intolerant to certain food because as soon as I eat them I need to go to the toilet straight away. I don't eat eggs, spinach, tuna and scampi as I have a reaction to them all. I'll find out whether the Gastroenterology team will investigate BAM/IBD as my calprotectin levels have been elevated too.

bantam12 profile image
bantam12 in reply to Sunita77

The Colestyramine is also used as an IBD treatment so it’s worth asking to try it. Good luck.

Sunita77 profile image
Sunita77 in reply to bantam12

Thanks. I've heard so much about these binders.

You have certainly been through a lot! I was going to suggest that you pay to see a gastroenterologist as a one off as this may get you fast tracked but it seems you are getting the right help now (finally!) I do hope that you find out for sure if you have BAM - I have pancolitis but I will say that not everything shows up when having a colonoscopy as things like microscopic colitis will only be found when biopsies are taken. Some people do have both Crohns and colitis; you could try posting on the crohns and colitis uk fb group as you may get more people responding to you who do have both. Good luck and I hope you find answers very soon.

Sunita77 profile image
Sunita77 in reply to Frasina

Thank you for replying. My GP suggested going private but because I managed to get an appointment with Gastroenterology he said the hard work has been done of getting one. I feel as if I'm half way of getting a proper diagnosis. I have joined the FB group. Thank you.

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