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Weight loss chat

A space to talk openly about weight loss journeys and challenges. Mumsnet hasn't checked the qualifications of anyone posting here. You may wish to speak to a medical professional before starting any diet.

Weight loss injections with ulcerative colitis

59 replies

Travellinggirly · 06/06/2024 20:17

Has anyone with ulcerative colitis used weight loss injections? I filled out an eligibility questionnaire online and one of the questions was a history of inflammatory bowel disease which obviously I had to answer yes to and then it said they wouldn’t be able to assist me.
I take daily preventative medication for UC and have done for around 20 years. It works for me and I have zero symptoms, never have flare ups and don’t have to watch my diet. Just wondered really if it’s a general no go to use weight loss injections if you have any kind of IBD? Wondering whether to discuss with my GP or if it’s just a waste of time trying to get an appointment if others have been told it’s a big no.

Thank you.

OP posts:
Menora · 07/06/2024 10:13

I didn’t want you to have no replies but your GP can’t prescribe but will be guided by the same prescribing guidelines as the pharmacy. The risk is of something happening the prescriber would be liable. The meds can have a lot of side effects on your entire gastric system. I’m not sure it’s worth the risk?

TryingAgainAgainAgain · 07/06/2024 10:22

GPs are not prescribing any of the injections for weight loss. They are prescribed on the NHS under tier 3 weight management services which your GP could refer you to, but it takes forever to get to the point of a prescription.

Perhaps asking the team you are under for UC would be best, if possible?

Travellinggirly · 07/06/2024 11:56

Thanks for the responses.
I wasn’t meaning that I was expecting my GP to prescribe it, more asking if it was worth getting an appointment to discuss if it’s ok for me to take it with the medication I’m on (and then I’d order privately if get the go ahead).

OP posts:
Bringonthesunforthewashing · 07/06/2024 12:01

I have uc, I really can’t see how this could cause a problem other than interfere with your other meds.

What meds are you on?

Menora · 07/06/2024 12:01

Travellinggirly · 07/06/2024 11:56

Thanks for the responses.
I wasn’t meaning that I was expecting my GP to prescribe it, more asking if it was worth getting an appointment to discuss if it’s ok for me to take it with the medication I’m on (and then I’d order privately if get the go ahead).

But as they don’t prescribe it all they will use is the same guidance as the pharmacy. If it’s contradicted you would need a specialist to agree it’s suitable for you. A GP can’t make that decision. We expect a lot from HCP’s they use the same guidance as one another. A specialist would have access to more data and use their specialism to help you make a decision but ultimately the person who says you can take it would need to take on all the clinical risk of prescribing a drug to someone where it is contraindicated. An online pharmacy will not take this risk and neither will a GP

Travellinggirly · 07/06/2024 12:03

Bringonthesunforthewashing · 07/06/2024 12:01

I have uc, I really can’t see how this could cause a problem other than interfere with your other meds.

What meds are you on?

I take Pentasa 500mg tablets x 4 per day. I have no symptoms and no flare ups (have been on this 20 years and works completely as a preventative).

OP posts:
Menora · 07/06/2024 12:04

Bringonthesunforthewashing · 07/06/2024 12:01

I have uc, I really can’t see how this could cause a problem other than interfere with your other meds.

What meds are you on?

It can cause severe gastric disruption. It can cause colitis. It can cause gastro paresis and pancreatitis. I assume you would not easily know the difference between an UC flare up and semaglutide intolerance very easily. It might not even have been tested on UC patients yet

Travellinggirly · 07/06/2024 12:07

Oddly I have now been approved for Mounjaro by Asda doctors after filling out their online questionnaire. I have messaged them to double check they’ve noted my UC and the medication that I’m on.

OP posts:
Swissrollover · 07/06/2024 12:12

Menora · 07/06/2024 12:04

It can cause severe gastric disruption. It can cause colitis. It can cause gastro paresis and pancreatitis. I assume you would not easily know the difference between an UC flare up and semaglutide intolerance very easily. It might not even have been tested on UC patients yet

I'm in the same situation as OP, although on Salofalk.

I don't think we could ever answer yes to the IBD question and get a private prescription.

If we lied and said no, any reputable online pharmacy asks for your GP's details to notify them that they've prescribed it.

I've read about some of the side effects listed by @Menora , which has been enough to put me off persevering. (I'm trying the Glucose Goddess method, which has stopped my continuous weight gain, and I am now slowly losing.)

Swissrollover · 07/06/2024 12:16

Travellinggirly · 07/06/2024 12:07

Oddly I have now been approved for Mounjaro by Asda doctors after filling out their online questionnaire. I have messaged them to double check they’ve noted my UC and the medication that I’m on.

Oooh, I cross-posted with OP! Do please come back and let us know if you successfully receive it, as I might try too.

Travellinggirly · 07/07/2024 00:41

This reply has been deleted

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Swissrollover · 08/07/2024 14:46

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Thanks. I tried, using your code, but they cancelled my order after the online doctor reviewed it the following day. I'm only on about half your dose for maintenance, so I had my hopes up and am disappointed. I hope it goes well for you!

SammySays · 05/09/2024 19:22

Hi @Travellinggirly i wondered how you are getting on? I have been on Mounjaro for around 4 weeks now and it has improved my UC symptoms so much. Using the bathroom far less frequently and having healthier bowel movements than previously. I wondered how your UC symptoms have changed?

Travellinggirly · 14/09/2024 13:03

@SammySays sorry for not replying sooner, didn’t see the notification.
I take medication that controls all my symptoms so don’t actually don’t have any UC symptoms at all. I was fine on 2.5mg but have had some bad bouts of diarrhoea on 5mg but seems to have settled down now. I didn’t notice anything in it though to give cause for concern for UC symptoms and no pain at all.

OP posts:
BuildingABetterMe · 30/10/2024 07:06

@SammySays @Travellinggirly can I ask how you are getting on? I also have UC and am currently in flare up. I have read some arguments that weight loss injections can improve inflammation so may actually be of benefit for us sufferers. Would love to hear your experiences and results so far.xx

Swissrollover · 30/10/2024 09:14

BuildingABetterMe · 30/10/2024 07:06

@SammySays @Travellinggirly can I ask how you are getting on? I also have UC and am currently in flare up. I have read some arguments that weight loss injections can improve inflammation so may actually be of benefit for us sufferers. Would love to hear your experiences and results so far.xx

Jumping back in as I have UC too. I've been on MJ now since July. I've gone from BMI 38 and hit 29.9 yesterday! 50lbs / 3.5 stone lost.

I've not really had any side effects, just mild diarrhoea on 3 separate occasions. I've taken it slowly progressing up the doses, and just moved up.from 7.5mg to 8mg.

I was in remission when I started and have stayed that way. I generally take my mesalazine (1g suppository) once a week now, down from 3 times. I stopped pills years ago as despite being diagnosed with pancolitis (affecting the entire colon), I respond better to foam enemas or suppositories.

I had seen that in the US, the doctors tend to prefer that you start once in remission, but the positive effect on inflammation may since have changed that. I guess it would be hard to assess and endure potential side affects of MJ during a flare-up though.

BuildingABetterMe · 30/10/2024 17:12

@Swissrollover thank you for sharing. I hope My journey will be as positive and successful as yours! Can I ask, where are you buying from? I have gone with Asda as my research has shown they are likely to accept me with UC, but they are not the cheapest.

SammySays · 30/10/2024 17:29

@BuildingABetterMe im sorry I have just seen your message to me!

I’ve been getting on really well with mounjaro. Although I have been in remission, I have always suffered with urgency and bowel movements multiple times per day (avg 7 times per day). Since starting MJ, everything has slowed down and feels a lot more comfortable. I am going to the toilet 2-3 times a day now so I finally feel normal!

BuildingABetterMe · 30/10/2024 18:01

That is so good to hear @SammySays how has the weight loss gone?

Swissrollover · 30/10/2024 18:10

BuildingABetterMe · 30/10/2024 17:12

@Swissrollover thank you for sharing. I hope My journey will be as positive and successful as yours! Can I ask, where are you buying from? I have gone with Asda as my research has shown they are likely to accept me with UC, but they are not the cheapest.

Edited

Asda rejected me for having UC, despite being in remission for over 8 years, but hopefully you'll have better luck. I guess each individual prescriber at Asda/ Zava makes their own judgement.

In the end I went with a provider who didn't explicitly ask about IBD. I saw how life changing it could be and that it is prescribed for other patients like me, so made a decision to omit the IBD diagnosis.

I take so little medication that it was removed from my repeats list a year ago, and I've not seen a doctor in over 5 years.

SammySays · 30/10/2024 18:50

BuildingABetterMe · 30/10/2024 18:01

That is so good to hear @SammySays how has the weight loss gone?

Ive lost 2 stone in 9/10 weeks 😀it’s changed my life

BuildingABetterMe · 30/10/2024 19:09

@SammySays amazing!

Where are you getting yours? Did you declare your UC?

Needtogetbacktome · 30/10/2024 19:28

I have Ulcerative Colitis, only diagnosed about 3 years ago after 3 years of suffering. At the beginning I lost a lot of weight due to the symptoms but after diagnosis and 2 years of high dose steroids the weight is back on. Now after a fight and numerous hospital admissions I'm on 4 weekly iv infliximab. Some slight improvement but still a lot of symptoms.

Anyway I decided 9 weeks ago against my gps advice to go online and sign up to wegovy. I've lost 11lbs and actually felt my UC symptoms improving. I'm not a huge eater. Manage maybe 1 full small meal a day. A few crackers and some soup in-between. Seen amazing weight losses in the same time scale and worried now.

Anyone else in the same boat. Any loss is a loss after years of suffering but worried I'm on the wrong track.

SammySays · 30/10/2024 19:30

@BuildingABetterMe i have been getting mine from Curate Health. Tbh I don’t think they have asked if I have UC. When I first ordered I did so through Pharmacy 2U who prescribed the first month and I did disclose my UC to them and had some follow up questions off the back of it. When I applied for my next month my order was rejected due to UC despite them prescribing the month before. It was very frustrating and I was unable to contact anyone to talk to through. Switched to Curate and been happy with them (touch wood it continues).

Swissrollover · 30/10/2024 20:09

@BuildingABetterMe I've PM'd you about the providers I've used.