Mother with Crohns at breaking point :(

[mommywithcrohns]

Hi everyone,

I have been dipping into this forum a little over the last few weeks and now things have got so bad I would really appreciate some advice on what to do next please. Sorry for the essay, but its hard to shorten it

Brief history: originally diagnosed with Crohns 2005, after 12 years of undiagnosed symptoms. Hospitalised in 2005 after repeatedly haemorrhaging from back passage, had two emergency colonoscopies first diagnosed ulcerative colitis, second after symptoms continued to worsen diagnosed crohns and I was put on drip feed for 11 days and liquid/bland diet to recover. Treated with anti-inflammatories, steroids and finally immunosuppressant over course of next 5 years till I went into remission.

Fast forward to April of this year and my symptoms have returned with a vengeance, difference is this time I have three young children (1,2 and 5) to care for and am beginning to find it hard to function on a daily basis.

It took a while for my consultants appointment to come through but I have seen him and I am awaiting a colonoscopy on the 23rd Oct. Currently on 2 x 1200mg of mezavant xl (mesalazine) per day.

I started on a low fibre residue diet when symptoms first flared, but this did nothing to stop symptoms, I was prescribed a high dose of steroids from the GP whilst awaiting my consultants appointment, but had a severe reaction to these and had to be taken off them (I was one of the 5% you read about on the side effect leaflet that became disorientated, anxious, unable to think straight etc). When I went to see my consultant and showed him my low fibre/low residue diet he replied that they don't recommend that anymore??? That I was to eat normally, just not eat anything that aggravated me. So this is what I did, avoided the obvious triggers, spicy and fatty foods, alcohol, caffeine, too much milk and so on. Well surprise surprise my symptoms have got far far worse. I am now back to eating low fibre, low residue but am in a worse way than before!

I have an appointment tomorrow with my GP where I am going to ask about a liquid diet and my suitability for that, as now I cannot seem to eat anything with out being in pain and the urgency to go to the toilet frequently throughout the day. I just don't want to eat at all, but need the energy to look after the kids.

I am lucky in that I work from home, as I would not be able to work in a setting outside of the home at the moment as I have too many 'accidents' and need instant, quick access to a toilet. My main difficulty at the moment is the school/nursery run in the morning, I have to drop the children off in 3 different locations and have had to start wearing protection as I frequently have an 'accident' whilst out of the house with them. I get anxious about any car journey over 20 mins as I have had accidents in the car. I have to abandon shopping trolleys in shops, excuse myself from social settings and go home early, divert car journeys to visit pubic toilets. It gets me down so much that I just want to sob about the indignity and anxiety of it all.

Any help and advice would be much appreciated, and thank you for taking the time to read to the end.

 

[my little penguin]

Can you Gp or ibd nurse get you modulen or fortips?( I believe are the two nutritional formulas in the U.K.)?
Formula only is used in kids instead of steriods with high success
Some adults have tried it as well
Basically you drink all formula -no food for 6-8 weeks and it heals the gut

Ds is almost 14 and was dx st age 7.
He has done this many times

He drank peptamen jr (semi elemental formula similar to modulen )
And now drinks neocate jr -amino acid based elemental formula which is so broken down it only needs a few inches of healthy intestine

Crohn’s disease (CD), a form of inflammatory bowel disease (IBD), is thought to arise from a complex interaction of genetics, the gut microbiome, and environmental factors, such as diet. There is clear evidence that dietary intervention is successful in the treatment of CD—exclusive enteral nutrition (EEN) is able to induce remission in up to 80% of CD patients. While the mechanism of action of EEN is not clear, EEN is known to cause profound changes in the gut microbiome. Understanding how EEN modifies the gut microbiome to induce remission could provide insight into CD etiopathogenesis and aid the development of microbiome-targeted interventions to guide ongoing dietary therapy to sustain remission. This review includes current literature on changes in composition and function of the gut microbiome associated with EEN treatment in CD patients.

Keywords: exclusive enteral nutrition, Crohn’s disease, microbiome

From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5452177/

 

[ronroush7]

Welcome. I am sorry for all you are going through. You might want to check out the section in here called Parents of Kids with ibd. I am going to tag Maya 142.

 

[my little penguin]

One thing to add
Mezavant is a 5-asa
These are NOT recommended as monotherapy for Crohns at all
They only treat the top layer of the intestine but Do not treat the through thickness of the intestine
Crohns affects the through thickness of the intestine
It allows the Crohns inflammation to simmer

In the US they will try 5-asa in kids first because they are very mild drug
But most GI equate them to giving aspirin for a brain tumor
Not going to help much but not going to hurt either

One thing to keep in mind
I know in the U.K. You need proof of damage on a colonoscopy to get better meds
If you use een and heal the gut prior to your colonoscopy you may not have evidence to get the meds you need

Once you reintroduce food after the 6-8 weeks of formula
The disease will come back in full force unless you have the right level of meds on board

Most use een to induce remission while starting a new maintenance med
Then the med can take over once food starts again

 

[mommywithcrohns]

One thing to add
Mezavant is a 5-asa
These are NOT recommended as monotherapy for Crohns at all
They only treat the top layer of the intestine but Do not treat the through thickness of the intestine
Crohns affects the through thickness of the intestine
It allows the Crohns inflammation to simmer

In the US they will try 5-asa in kids first because they are very mild drug
But most GI equate them to giving aspirin for a brain tumor
Not going to help much but not going to hurt either

One thing to keep in mind
I know in the U.K. You need proof of damage on a colonoscopy to get better meds
If you use een and heal the gut prior to your colonoscopy you may not have evidence to get the meds you need

Once you reintroduce food after the 6-8 weeks of formula
The disease will come back in full force unless you have the right level of meds on board

Most use een to induce remission while starting a new maintenance med
Then the med can take over once food starts again

Thank you so much for your replies!

I was pretty convinced that the mesalazine wasn't making any difference as I know it's quite down the pecking order where meds are concerned.

Also, I know what you mean, if I manage to heal my gut prior to my colonoscopy then I won't get any meds and as you say end up right back at square one! Also they will find no evidence of the symptoms I have told them about, and think I am making it all up!

When I look at it like that, it seems my only option is to cope the best I can till I get my test.

Does you think that is the best course of action?