Can't find any help.

[rose1812]

hi, I'm new on here, I've not gotten a confirmed diagnosis of crohns yet, I have orofacial granulmatosis which is also known as oral crohns, so I've been under investigation for the past 17 years.

this past summer I was quite unwell & on a gastro ward for six weeks on tube feeding, I had multiple infections & also was told my calprotectin levels were high. I was managing well on feeds, however since being home & eating I've been in so much more pain, I constantly feel sick & really lethargic but struggling to sleep more than four hours or so. I've had to take laxatives daily otherwise my body just stops functioning.

I've just had a colonscopy, I've also had an mri, flexible stigmoidoscopy and an endoscopy. all normal. but each time I give in a sample the calprotectin levels are rising, the most recent being just over 400.

I'm eating really bland foods as to try & not upset my stomach, but I feel too unwell to make it out of bed most days. I take merbeverine & paracetamol for pain, cyclizine for sickness & omeprozole. I don't know if they help.

I've been going to the doctors, but the issue is that I have a diagnosis of anorexia (for the past eight years), so I'm not taken too seriously. now I'm rapidly losing weight & I really want to stop that from happening, but I'm struggling to cope being in pain constantly & I'm just at my wits end.

I don't know if anybody has similar experiences or just any advice on what I could do, I'd really, really appreciate it. I feel completely lost in all this! sorry for my rambles. thank you.

[FRreedman]

Hi, I don’t know where you live, but if it is anywhere within hitting distance of Harrow (North west London) or if there is any way you can get near there, I would contact StMark’s hospital for diseases of the bowel. (It keeps changing its official name). It is undoubtedly the TOP place to go for BOTTOMS in this country. Please message me if you want any further advice or info.

[rose1812 in reply to FRreedman]

thank you! I'm in east anglia region so not too close but still only an hours train journey to London so I'll look into them, thank you!

[EOLHPC in reply to rose1812]

Have you ever been seen at Addenbrooke’s?

[rose1812 in reply to EOLHPC]

I have, but it was when I got diagnosed with OFG, so.. 15 years ago, I think. then my investigations & everything were referred back to my local hospital.

[EOLHPC in reply to rose1812]

Am wondering if Addenbrooke’s specialist feeding issues team might help you

Am 68 & in long term care at Addenbrooke’s with lead clinics immunology, rheumatology & gastroenterology., because I have several early onset rare incurable progressively debilitating multisystem immune dysfunction illnesses & what my lead clinicians call a Crohns-like enteropathy alongside severe mouth to bottom slow transit dysmotility, with predisposition to high colon fecal obstructions due to mainly to neuropathy + hypermobile Ehlers Danlos stretchy bowel. For 5 years now Addenbrooke’s gastro team has had me on long term Elemental Diet (pre-digested amino acids) because I can no longer tolerate food residue & digest food.

The reason my consultants think my GI tract issues involve inflammatory process is that these issues respond positively to my immunosuppression meds.

Following emergency admission to hospital for 6 days of unsuccessful treatment (enemas, picolax etc) last summer for a particularly stubborn bowel impaction (heavy fecal loading at ileocecal valve + upper descending colon) I’m now prescribed long term 1-2 weekly picolax bowel cleanse with glycerol suppositories in between cleanses. When

This regime stops helping as much as it is, I’m to try prescrip prucalopride &, if necessary, then linaclotide.

Despite a lifelong history of feeding issues, weight loss + being in care with gastroenterology at my smaller local hospitals during flares/dysfunction/pathology etc in one part of my GI tract or another, Addenbrooke’s Gastroenterology approached my case as if all that history was irrelevant. But after several years of their investigations, we understand my version of ths stuff better so are now working together more constructively & I’m feeling more functional etc

Sorry if that’s too much detail, but am hoping something in there may help you plan how to get the care you need. 🍀🤞

Although Addenbrooke’s is not in my NHS catchment area, I qualify for care at Addenbrooke’s because my smaller local hospitals cannot give the tertiary care I need

[EOLHPC in reply to rose1812]

PS here is a link to info on the relevant parts of Addenbrooke’s website:

cuh.nhs.uk/our-services/nut...

cuh.nhs.uk/our-services/nut...

[rose1812 in reply to EOLHPC]

thank you so, so much, that's so helpful to hear. I will definitely find out more about Addenbrookes & their specialist team, thank you so much for the info and links!

[EOLHPC in reply to rose1812]

Good luck…hope you’ll let us know how you get on🍀🤞

[Eixor57]

I’m so sorry to hear how you are suffer so much. The only advice I can give you is what I did for my Crohn diagnosis. I read the book “Breaking the Vicious Cycle” and I started the Specific Carbohydrate Diet. It help me heal. But it’s a lifetime diet that should not be broken. But it’s worth it to be free of symptoms for many people are on this diet. Yes, I messed up and went off diet or found out that any alcohol will attack my colon and I had to go through hell here and there because of my failure to eat healthy in SCD. Once I had to even take Inflectra infusions along with the SCDiet and in 6 months my GI looked at my colon and mentioned the word “miracle”. But of course I give all credit to my faith and prayers to God. Today I am on NO meds and just continue my diet. If you have not tried the Specific Carbohydrate Diet and your desperate to try anything then I would suggest to buy and read the book. I read it in one day!!! Also check out pecanbread.com. It’s for kids but I would follow there protocol because it’s very careful as everyone is different. For example, I haven’t been able to consume homemade yogurt without some sort of negative symptom. My colon hates the dairy. I hope and pray you find a way to healing. 🙏🏼🙏🏼❤️🙏🏼🙏🏼

[rose1812 in reply to Eixor57]

sorry for such a late response!! thank you so much for this, I will definitely check out the book and the website. I also struggle with dairy so I've been dairy free for the past couple of years - but I'm also vegetarian so my diet is so limited alongside so many intolerances and allergies. thank you, and I'm so pleased to hear the diet has helped you 🥰

[momofmmca]

My son was diagnosed with severe Crohns Disease just about two years ago when he suddenly ended up in the hospital with an infection in his pelvic region. Anyway, his GI doctor said that his condition had nothing to do with diet and put him on infusions of Remicade. To make a long story short—I wanted him to change his diet, he was still having flare up’s on the medication. Since we changed his diet to the SCD diet, Specific Carb Diet…he has not had any flares, no symptoms. His skin and hair color came back and he has gained over 25 pounds in muscle. He was diagnosed at 18, and just turned twenty. The diet is not easy at first, but once you get into a groove it gets easier. I changed our entire family to the diet, so that he would be successful. My daughter also started showing signs of IBD. It is truly the best thing I ever did for him and my family. He has been on no medication since April 2020. Diet can have a positive effect. Everyone is different so take baby steps, and listen to your individual body. Good luck!